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It had been two weeks of speculation, punctuated with bouts of pain and nausea, resulting in more visits to the hospital. At one point I thought I might need paracentesis (draining of fluid from my tummy). When a liver failed, the body couldn't process all the liquids that built up naturally, creating ascites. It turned out my ascites wasn't bad enough to warrant paracentesis because the risks outweighed the reward. It was incredibly uncomfortable but not as life-threatening as encephalopathy, that is, ammonia built up in the brain causing memory loss, mood changes, blackouts, coma and possibly death. I took two medications for that, Lactulose, which was a sickly sweet liquid that I took 3 times a day. It was a powerful laxative and helped flush the ammonia from the body, that was equally revolting going in and coming out. The other was Rifaximin, which was an antibiotic that acted like a shield for the brain against the ammonia.
The name of the game at the moment was trying to eat enough protein, keep ammonia levels in check, take medications and get some exercise, while I waited to see if I got on the transplant list and ultimately got a working liver. If not, well, I was trying to come to terms with knowing I might not see next year.
Jane was scheduled to arrive by taxi on Sunday, December 17th, to collect Dad's car and transport us to the hotel near the Region hospital. The week of tests was to being tomorrow, and I wanted to be well rested.
Dad was sulking.
I had been all packed, sitting and waiting when Dad decided he needed some tea. “I'll make it,” I said, starting to move, but Dad was already halfway out of his chair. He promptly crashed to the ground, and fell against some chairs. Quickly, I tried to help him up, but it was a bit more of a struggle than I had expected. After, wresting him into a chair, I did a quick check and saw his hand was already puffing up. I went into the kitchen to get a cold compress, when I heard another crash. Apparently, he was still trying to get up and make tea. At this point, I thought perhaps he had suddenly lost his mind. There he was, on the floor, blood coming from his head and all tangled up in his chair. After another struggle, I got him to the soft chair and called 911. He complained and said he was just fine, but he was clearly disoriented and bleeding, so I ignored his objections.
Fifteen minutes or so later, the paramedics arrived, and they seemed rather disinterested. They quickly checked Dad out and said they thought he was fine and didn't need to go to the hospital. I explained I was waiting for my sister to pick me up and we were going to the regional hospital for a week of testing for a possible liver transplant. “Mmm,” one of them mumbled, clearly more concerned with where they would stop for coffee after this call. I guessed they weren't really interested in being helpful that day, it being Sunday and all. Dad wasn't helping much, by insisting he was perfectly okay and didn't even want to go to the hospital. Finally, having lost that argument, they had Dad sign a letter, absolving them of their sins. They quickly packed up and left, having achieved nothing.
Great! Something else to worry about. I thought as if on cue Jane arrived. I explained the situation, to Jane, and ever the realist, she said, “well after we get checked in and if there is time over the week, I will check on Dad.”
There was nothing for it, because I couldn't miss my testing week to take care of Dad, so I put the phone beside him, with tea, of course, and a bottle of water and the TV remote. I hoped that was enough, but with my worries about my health, his falls, and feeling so tired and ill, it was all I could do to get down to the car.
Jane had carried my bag down to the car, and with one last “Are you sure you're okay?” Dad nodded, and I left.
It was a good 45 minutes to the Hotel and as I watched the cold, empty fields, brushed with snow, my fears reasserted themselves.
I was really worried that I wouldn't be eligible for a transplant. Perhaps they would find that I have an underlying condition, making a transplant it too risky, or, I'm too frail to survive surgery, or that I won't meet some criteria that I haven’t considered. I'm not a drinker, or a smoker or anything, so at least I don't have to worry about a drug test or anything. I also don't have to worry about the added challenge of quitting a drinking habit or some added difficulty post-surgery. If I do get rejected from the transplant program, what will I do? We do have Medical Assistance in Dying (MAID), so I suppose I would have to apply for that because a painful death isn't very appealing to me.
“How was the train?”
“Good. I love the train. You can move around and be on your computer, and also the scenery is nice.”
“Nobody jumped in front of the train?”
“No, not this time.”
People seemed to jump in front of the train with alarming frequency. Yikes, I really do have death on my mind a lot lately.
“So, Bec said this place we are staying at used to me an Armoury?”
“Yes, it was a military barracks or something at one time, but now it's a non-profit for people to stay when a loved one is in the hospital.”
“Are we in the same room?”
“No. Your room is on the main floor and has a little kitchenette, and mine is on the second floor and is a little smaller. We thought it would be good for you to be on the first floor.”
“Great, thanks.” I had borrowed Mom's walker from Dad, because I thought it might be good to carry our coats and bags on it, plus I might do a lot of walking, and I get tired using the cane.
“Can you believe Dad?”
“I know, what a pain.”
“I hope he's okay.”
“Whatever. This week is about you and your tests. You need to focus on that. I will check in on Dad when I can, but I think you should worry about yourself.”
“Sure, ya. I'm super worried I won't be eligible for a transplant. I mean super worried.”
“Well, we will have to take it one step at a time. How are you feeling physically?”
“Absolutely horrible. The Edema in my feet is so horrible I can't even get my shoes on anymore. I had to struggle for ten minutes to get my boots on, and they are the loosest footwear I own after I took all the insulation out. One of the tests is a frailty test with the physiotherapist, and I'm supposed to wear track pants and running shoes. I am so puffed up from the ascites that I can only wear loose dresses and as far as running shoes go, don't make me laugh. I'm worried about Dad, I'm beyond tired all the time, I throw up constantly, I have to wear adult diapers because I live in fear of having an explosive diarrhea event, and my nose keeps bleeding. Who knew the liver was so important?”
Oh, oh, the feels are starting, and I say with tears welling up in my eyes, “It all seems so unfair. I don't drink or smoke, I exercise a lot, I am overweight but not horribly so, and I always thought I lived a pretty healthy life. I see all these other people abusing their bodies and also being horrible human beings and they just skate by with nary a problem.” I try not to express that feeling very often, because I know everyone feels that sometimes. Life is not fair, or as a favourite saying in my family goes, “Life is hard, then you die.”
Jane nods but says nothing. I feel bad for having said that because she lost her son to cancer at a young age, and if anyone knows about the unfairness of life, it's Jane. She is making an enormous sacrifice being with me this week because it can't help but stir up memories of her and her son, Fraser, going for tests and treatment.
I don't really have much to say, so I look out at the fields some more.
Soon enough, the fields gave way to sporadic buildings, then more buildings. The road widened out to 4 lanes, and strip malls lined the path to their destination. Jane was lost without GPS. I was lost with or without GPS. The women in our family all seemed to be devoid of a navigation gene, and as a result I had become, I thought, a pretty good passenger. I tended to just look out the window. The hospital was on the furthest end of the city, and even though it was a Sunday, it was slow going. I was feeling pretty uncomfortable and was getting eager to lie down for a bit.
Finally, we arrived at the hotel, and Jane turned and said, “You just sit here, I am going to go and check in, and then I'll come out and get you.” I nodded appreciatively. I hated standing and waiting, it made me sweat and throw up. “I'll leave the car on for heat.” and then Jane stepped out into the cold December day to sort out our accommodations.
I was dreadfully worried about all this because my life was basically hanging in the balance over the next week. My lifespan was now calculated in three-week increments.
Jane appeared a few minutes later and said we were all set. She would get the walker out of the trunk, and then we would go to my room, and she would bring the bags in after. It was good having a big sister.
The Armoury was a weird place. Completely devoid of people, furniture, artwork, or anything interesting except an old flickering Coke machine that seemed to only accept coins. I was definitely getting a 'Welcome to the Zombie Apocalypse' vibe.
Door Key cards? Don't make me laugh. It's only old school keys attached to big plastic diamonds with a number for this place. It's kind of quaint. I feel like I'm in the 1950s.
My room was pleasant. Simple, with a little round dining table and small kitchen area. The washroom had a shower with grab bars and a broken towel holder. Perfect.
The bed was nice and big and very comfortable, so I decided to just fall into it, for practice. Stretching out, I watched uselessly as Jane left to get my bag and walker. Not fancy but very homey and those Zombies in the rest of the Hotel, seamed unnaturally quiet.
“Phew! Sorry I took so long. I took my bags up to my room, and now I need a cup of tea.” Jane always needed a cup of tea. “Would you like some tea?”
“No, I'm happy just laying on this bed, I'm kind of worn out.”
“Do you want me to leave you alone?”
“No, it's nice to have some company.”
“Okay then.” and Jane busied herself making some tea and putting out some biscuits.
Sipping her tea while I lay on the bed, we made some small talk for a while. Jane answered a few texts from her family and, while looking at her phone, said, “So, your first appointment is with the social worker at 10:30. I think we should go early so we can find parking and figure out the layout of the hospital.”
Jane had put all my tests and appointments in 'Calendar' on her phone, but I prefer paper, so I had a folded version in my journal.
“Sounds good.”
“So, I'm thinking we leave here around 9:30?”
“Sure,”
“I brought some food, but I can go out and get something.”
“I'm good just laying here. I'm not hungry.”
“Okay, I brought some bottled water,” she said, putting it in the fridge along with some apple juice and lemonade.
“Perfect, thanks.”
“I guess I'll go. I'm going to drive around the city a bit and get oriented. Are you sure you don't want anything?”
“Yah, no, I'm just fine.”
I think Jane had some nervous energy to work off. I know she didn't really want to be the one to accompany me at the hospital, but as luck would have it, she was the only one available right now.
“I'll check in on you later then.”
“Sounds good. Thanks, see you later.”
Jane put her dishes in the little dishwasher and then left, quietly closing the door as I fell fast asleep.
“Penny?”
“Hmm, what?”
“I'm back and brought a little food and some more drinks.”
“Oh, yah... great... thanks.”
“Do want to sit at the table and have something? I brought a chicken Caesar salad.”
“Oh, sure,” I said, still a little wobbly. “What time is it? Is it time to go to the hospital?”
“No, it's about 8 pm, but I thought you needed to eat something.”
As I made my way to the table, I said, “So, did you find anything interesting?”
“Yes, I found a couple Thrift Shops.” Of course, she did.
“I also found a fish and chip shop run by a woman who is a liver researcher at the hospital by day and also runs the fish and chip shop. It was her parents' place, and she keeps it going in their memory. I told her about you, and she was very interested and suggested some healthy foods for you, like that salad and some soup that we may try another day.”
“Oh, that's really cool.”
I nibbled my salad for a bit, and Jane and I made small talk until I needed to go to bed.
Jane cleaned up our dishes and reminded me, “I'll pick you up at 9:30 tomorrow morning.”
“Great, I've set my alarm.”
“Night.”
“Thanks, night.”
Jane arrived in the morning with me struggling to get my boots on. Even with bare feet, this was an exercise of fitting a round peg into a square hole. I had already had a shower, put on a bit of makeup, shown my hair my brush again, and dressed in my very loose clothing. Finally, I got one boot on. “Do you need help?”
“No, I think I can...” and with a whoosh, I succeeded. Hat and coat on, we made our way to the car. Jane put the walker in the trunk while I was engaged in a wrestling match with the seat belt.
“Ready?”
“Yup” and I instantly threw up. I carry 'barf' bags with me at all time and spent a few minutes using one, then turned to Jane and said, “Sorry, okay, now I'm ready.”
Jane snickered as we immediately set off in the wrong direction.
Once at the hospital, Jane let me out at the front door. She got the walker and my backpack out of the trunk and off I went to wait inside. Hospitals are awesome places to watch people, and I was enjoying myself when Jane appeared. “We're a bit early, do you want a coffee or tea or something?”
“No thanks, I'm not supposed to eat anything, but you go ahead.”
“Okay, I'll get a tea.” She said, motioning her head towards the Tim Hortons in the hospital lobby.
When Jane came back with her tea and a cranberry muffin, we sat at a table for a bit, before Jane looked at her phone and said, “Well, we should go up to the 4th floor to meet with the Social worker.”
Jane wrapped the remains of her muffin in a paper napkin, threw out her cup, and so “The Week of Hell” began.
We made our way to the “transplant-unit” through a confusing set of corridors and into a nice big waiting area. I checked in with the programme coordinator, Grahame, then we took a seat. Kelly soon appeared, and she escorted us to her office, where she would explain the whole transplant evaluation process. I was given a 'patient' binder and for about an hour Kelly told us what to expect and answered our many questions.
At one point I told her about my fear of not getting a transplant and if MAID would be an option at that point.
Clearly.
Extremely clearly.
With the clearest clarity one could imagine, Kelly told us that at the transplant-unit they never want to hear any talk of suicide.
Neither Jane nor I had understood, prior to this meeting, that a transplant is a total team effort by everyone, especially the transplant recipient. You can't sign a DNR, and you must have a ‘Power of Attorney’ that realizes that switching off the machines is not an option. Jane and I both realized why this meeting was the first encounter with the transplant-unit. It's going to take monumental strength and determination to make it through a transplant, and no-one wants to dedicate so much effort and finances to this procedure if the recipient, isn't prepared to fight to the bitter end.
This ethos had a big effect on us as we realized this whole week had nothing to do with 'proving' I was sick, but rather for them to gauge my 'fitness' both physically and mentally to survive such a major operation and a lifetime of aftercare.
I assured them I was ready for this fight and was encouraged by the obvious dedication of the unit to save lives.
Kelly filled out a lot of forms, including medical history, personal history, various financial aid programs and finished with a form for designating a ‘Power of Attorney’. We went over some of the binder contents and were then sent out into the wild to find the cafeteria for some food and to digest all the information.
We sat in the cafeteria, Jane with her tea and a salad and me with my water. I couldn't eat prior to my next test and could only drink clear fluids. We had a bit of a debrief, and I added a few items into my journal. Jane had taken a copious amount of notes, but I had a few things to add. She called Dad.
Well, he had fallen again and was now in the hospital. Tomorrow there were no tests, so Jane decided to go home while I slept. I think I got the good end of that deal.
My next appointment was a CT Abdo/Pelvis. My loose-fitting clothes didn't have any metal clasps or anything, so I didn't have to change into a hospital gown. I'm lucky because I'm not claustrophobic at all, so I wasn't uncomfortable. The test lasted about half an hour. Easy Peasy. After that, it was off to Radiology for a chest X-ray.
Finally, at about 3:30, I was finished with Day 1, and it was time to go back to the hotel.
Jane got me settled into my room and back to bed, and then she was going to go out for a few hours to get a few things for my day off tomorrow.
Back in a nightgown, I climbed in bed and fell asleep.
Jane patted my arm, “Penny?”
“Hmm, oh hi. What time is it?”
“It's about 7:00 pm. Do you want some food?”
“Sure.” Not really, but I was trying to be polite.
I made my way to the table, and Jane had got me a Styrofoam bowl of chicken soup. It was fantastic. “This is really good.”
“I got it from that liver specialist doctor's place. She said this would be good for you.”
“Mmm.” I actually ate it all.
Jane had a salad of some type. “Do you want anything else? I got some cookies.”
“No, but that was delicious, thanks.”
“So, one day down. What did you think?”
“That meeting with Kelly really opened my eyes. That was very serious and clear that there is to be no half-assed effort tolerated. I feel like I have just been through an episode of 'Scared Straight', but it's really good to know the expectations.”
“I know. I thought we were going to have to 'prove' you were sick enough to warrant a transplant, but that's not it at all. There was no question of your need, it was more, can you survive, and do you want it bad enough. Are you willing to fight for your life? It was very intimidating but powerful. How about the other tests? How did you feel about those?”
“They were easy and painless. Though,” I laughed, “When I lay on my back, all the liquid in my guts presses down on my innards and it's a bit uncomfortable.”
“Sure, ya. That's good, but we haven't got to the poky stuff yet.”
“I'm more worried about the 'stress test' on Wednesday. Mainly because I forgot my track pants and I don't have running shoes. I hope I can do it in my socks.”
“I can pick up your track pants when I go to see Dad tomorrow. Where are they?”
“I have a pair of black ones at my house in the closet, probably hanging on the left side, but if you can't find them it's okay, I'm not even sure they will fit.”
“I'll try to find them. Speaking of Dad, I picked up some drinks and food for you, while I visit him. Is there anything else you need?
“No, I'm good.”
“I'm mad at Dad being a pain in the middle of all this.”
“Yah, I'm not super thrilled. If he had just let me make the tea, none of this would have happened. He is so stubborn.”
“I'll pop in tomorrow before I go. Are you sure you'll be alright?”
“Oh, sure, all I do these days is sleep, so I'm sure I'll be fine.”
“Okay then, I'm just going to put this stuff away and then I'll leave you alone.”
“Thanks again, Jane, I really appreciate all your help.”
“No problem, I have to watch out for my little sister.” She smiled. I smiled. Then went back to bed as Jane tidied for a few minutes, then left. She checked in once more in the morning, then I had all day to just lay in bed.
Tuesday evening, Jane appeared with some food, and I was actually awake for a change.
“Oh, Hi, how was your visit with Dad?”
Jane rolled her eyes and set the food down on the table.
“That good, eh?”
“Yes, quite the pain. I got some fish and chips. Everyone knew fish and chips were my absolute favourite, and I was kind of hungry since I hadn't eaten anything all day.
“Ooh, Yum.” I sat and had some fish. “Man, that's good! Is it from the 'liver lady'?”
“Yes, we are getting to be good friends.”
As we ate, Jane regaled me with the story of Dad's condition. Apparently, he sat for a long time after we left, and when he got up to go to bed, he fell again. Luckily, we had left the portable phone headset on a little table beside his chair, so he could call 911 from the floor. Also, we hadn't locked the door on our way out, so the paramedics could get in easily. This time they took him to the hospital, and dumped him in a four person ward, and the hospital staff were very unhappy about it.
The local hospital was fine for an Emergency and the wings with Specialists and Diagnostics were very good, but the overnight wards were closer to a snake pit than anything else. Everyone in town would do almost anything to avoid staying at the hospital. Although the nurses were lovely, they were overworked; additionally, the old ward was in disrepair and lacked basic supplies. The hospital was currently having a fundraiser for an MRI, but I thought they should fix the crumbling patient area and pay the nurses more before buying another big, expensive machine that went ping.
“I hope they keep him for a bit, because he is not safe at home on his own and I, well, am kinda busy this week, but also I'm not really able to take care of him much any more and he can't take care of me.” After Mom died, having me spend most of my time over at Dad's place was a good solution, but I think that had run its course.
“I explained the situation to the hospital staff, but they seemed less than enthusiastic about keeping him. I gave them Bec's number because they had you down as the contact.”
“Great thanks. I really don't want to have to deal with that.”
“No, of course not, and woe be to them if they cross Bec.”
We both laughed at that thought.
“So, for right now he is staying in the hospital?”
“Yes.”
“Are they doing any treatment or anything?”
“No, they seem rather useless.”
“Yes, they are very useless, but at least Dad is safe and will get some food.”
We ate in silence for a bit, lost in our own thoughts.
“What else did you do today?” I said, breaking the silence.
“I went to a couple Thrift Stores.” Yes, of course she did. Tea and thrift stores are Jane's real passions.
“Did you find anything?”
“Some small things, but I'm taking the train home so I can't carry a bookshelf or something big, though I was tempted.”
I snickered with a mouth full of chips.
“Oh, I brought your track pants.”
“Great, thanks.” That reminded me of how much I am dreading the stress test.
Jane looked at the schedule on her phone and said, “So, tomorrow, besides the stress test, you have a visit with the transplant coordinator and then after that, a meeting with the hepatologist and fellow on the transplant team. Then some blood-work.
Tomorrow, you also have to stop all caffeine. That will be hard for you since you are a coffee fiend.”
“Indeed.”
Well, I was stuffed. I ate a lot of my fish and chips. Took a last sip of my Coke and called it quits on caffeine for a few days.
Jane and I sat for a while chatting about nothing because we both needed a break from the intensity of everything going on. After that, we went upstairs because I wanted to see her room. The elevator seemed odd because it required a code. I guess that was left over from Armoury days. Either upstairs was where they kept all the bombs, or it was where the Officers stayed, and they didn't want the privates on their floor.
Jane's room was pleasant, though quite a bit smaller than mine. I liked her shower area, but overall I preferred my room. After-all, I had a fridge and microwave.
“Hey, where do you boil water for your tea?”
“There is a communal kitchen and dining area. Here I will show you.”
I guess family's could make a meal and sit together, sort of home away from home.
"It feels eerie with no one else around."
“I met the person at the front desk and one other person, and that's it.”
“I think anyone staying here is very sick or holding vigil at the hospital. Not much of an entertainment spot, that's for sure.”
“Yah, I guess this is actually the first time I have been out of my room other than going down the back hall to the parking lot. It's just weird.”
Once back in my room, Jane went out to the car and brought in a few things, including my track pants.
Again, we sat and chatted for a bit, then Jane yawned and said she was going to go back to her room, have a bath and call her husband.
“That sounds like a plan. Thanks again for the fish and chips, that was a real treat.”
“No problem. You going back to bed?”
“Yes, but first I'm going to have a shower and make my bed.” There was no room service, and they didn't come and make beds and such, but that was fine, I was happy to be left alone.
“Okay then. Your first appointment is at 10 am, so I'll pick you up around 9:30 am.”
“Excellent, thanks, Jane.”
“Sure, no problem.”
We had tidied the dishes while we talked, so there was nothing to do, but call it a night.
In the morning after a shower, I wanted to try on my track pants. I couldn't even get one leg over my giant liquid filled thighs, so Plan B it was. What was Plan B? Nothing, just go as normal and explain the situation because I figured they had heard this story many times before.
I sat for a while doodling in my journal. Most of my drawings seemed to be of various types of needles. I didn't think I was really afraid of needles, in fact, I had always been stoic in getting vaccines, and I had donated lots of blood over the years. Although donating blood had to stop after developing thrombocytopenia, I had a nice little collection of achievement pins. However, this whole liver experience had been a whole new level of poking, and I was getting a little gun-shy.
Jane arrived, and we trundled our way out to the car, buckled ourselves in and drove off in the wrong direction, of course.
Once at the hospital, Jane got a tea, and we made our way to the 4th floor, to the transplant-unit area, where we met the physiotherapist, Kristen, who would administer my stress test.
Before sitting, I blurted out my whole problem with finding appropriate clothing, and that my feet were really puffy and I couldn’t put shoes on my feet, and were socks okay... she smiled and explained that this was very common. Relieved, I filled out a questionnaire on my usual fitness activities, and then the test began.
She had me do unaided walking up and down the hall past different markers at as quick of a pace I could maintain safely. I did well, I thought, but later she mentioned time was part of the equation, and I wanted to do it again, because I was sure I could go faster. Kristen said that it wasn’t necessary, and that I had done fine.
Next were a lot of resistance strength tests, like holding a light weight in a hand and lifting my arm into the air, 10 or 15 times.
A hand grip test that was, surprisingly, a very good indicator of your frailty. I was awesome, at least I thought so. I also had a balance test, and I did surprisingly well. I even surprised Jane.
All in all, my frailty level was moderate. Of course it was way below someone with a healthy liver, but I was worried I would be in the lowest category.
Buoyed by my test results; I was in a good mood for the rest of the day.
The next appointment was with the transplant coordinator, Carolyn. This was a biggie. Carolyn went over everything with Jane and me for over an hour. There were dozens of forms to fill out. She explained the whole transplant procedure and what to expect. It was so much information that Jane was writing furiously in my journal and I was following along in the transplant binder. We didn't want to miss anything.
We had some time to kill before the next appointment, so we went to the cafeteria for lunch. I had no eating restrictions other than no caffeine, so I had a slice of pizza and a carton of milk. Jane had her tea and a Caesar salad.
While eating my pizza, I got a call on my cell from the other hospital about Dad.
“Is this Penelope?”
“Yes.”
“This is Megan, a social worker from the hospital. We have you down as the contact for Bruce. Is this correct?”
“No, my sister Bec is now the contact. I'm very sick and up at the regional hospital being assessed for a possible liver transplant.”
“Well, I want to talk to you about your Dad's condition.”
“No, I'm not the contact person, you should call my sister Bec, she is now the contact.”
“Your Dad seems to be fine, and we want to send him home. Can you come and pick him up?”
“No, I am up at the regional hospital being tested for a liver transplant, and also, my sister Bec is the contact person.”
“We really need to clear out his bed because we are at capacity. Can you come and take him home?”
“Are you really this stupid? I have explained clearly multiple times I am up at the regional hospital being tested for a liver transplant and my sister Bec is now the contact person.”
“Well, we really need to send him home.”
I hung up.
Well, my lunch and good mood had been ruined. I tried to shake off the mind numbing stupidity I had just experienced with a gulp of milk.
“What an idiot,” Jane said.
“Some people.” I replied, rolling my eyes.
We gathered our things and made our way back to the transplant-unit for an appointment with the hepatologist. The transplant-unit waiting area was very calming, which I needed after that stupid social worker’s call.
The chairs were comfortable, and there was even a puzzle area if you really had an urge to torture yourself a little more. It was interesting to see the stages of liver failure and recovery all in one room. Some, like me, were very sick and clearly hoping for a transplant, but there were others who had had a transplant and were on the road to recovery. One person had had a transplant several years earlier and was in for an annual checkup. I couldn't help but be a little jealous.
After a brief wait, it was my turn, and into the warren of little treatment rooms, Jane and I made our way to room 3. A nurse came in and checked my vitals, asked a series of questions and took my list of medications. I started carrying around my medications list printed out because every single medical person I saw wanted that list and calling it up on my phone was a hassle. Also, sometimes they needed to put my medications list in a computer somewhere, and it was easier to give the nurse a piece of paper, rather than my phone.
After a few more minutes, the hepatologist arrived, along with a hepatologist Fellow. They did a physical exam, looked at my previous tests, took another medications list from my pile and then left to confer on my situation. Jane and I sat nervously looking around the little room. Upon their return, the hepatologists had settled on my blood tests; I believe the overall decision was 'all'.
The blood lab was down the hall, but on the same floor. They were expecting me, and I didn't have to wait. After taking 10 vials of blood, I was free to go home and rest.
Jane greeted me in the waiting room, and we headed out.
I was feeling a little invigorated when we got home. I think I was so worried that when it turned out to be a good day, except for that stupid social worker’s call about Dad, I felt a lot of relief. I wished I could have a coffee.
Jane and I had a good debrief, and she was impressed very by my balance in the fitness test. I was pleased with my grip strength and how positive and competent everyone was at the transplant-unit. Originally, I was feeling like it was me against them and I would have to keep advocating for myself, as is pretty common when dealing with the medical community.
I rarely had much interaction with the medical community in the past because I always felt like I was trying to prove something was wrong, and they dismissed me for being fat or a hypochondriac or hysterical. I guess for many Doctors they see the same thing over and over and get jaded to the point where they become disinterested in patients. However, at the transplant-unit everyone was very kind and non-judgmental while being serious and professional. Many of my fears were allayed by today's tests and meetings.
Back at the hotel, Jane left to do some more Thrift shop hunting and pick up some food while I caught a few hours sleep. Later we had dinner, a large sub sandwich and a salad we shared, a short chat session, then it was back to bed. Tomorrow started early with part one of a MIBI exam at Nuclear Medicine around 8 am. We would have to leave by 7:30 am.
It was less stressful now that I had a diagnosis and things were being done to address my liver failure. Even though the possibility of death was disconcertingly high, the actual knowing was a comfort.
My phone rang and startled me out of my revere. I was sitting on the toilet, and reflexively answered without looking at the caller id. Much to my horror, it was the social worker from the local hospital again.
“Is this Penny?”
“Yes, but this is a bad time.”
“We really need to clear your Dad's bed and send him home.”
“Look, I'm sitting on a toilet about to go to the hospital for a test to see if I qualify for a liver transplant. I'm not Dad's contact anymore, and you were told to call my sister Bec.”
“I couldn't get in touch with her, and we really need to send your father home. I will be out of the office later but you can be reached at this number,” the she rattled off a bunch of numbers that I had no intention of remembering.
“I don't have a pen.”
“I'll wait.”
“I'm on the toilet, and don't have a pen with me.”
“I'll wait.”
I hung up and blocked her number. She seemed to keep calling from different numbers to avoid my blocks. Yes, this may indeed be the stupidest person I have ever encountered! I finished getting ready, and when Jane arrived, I told her about the insane social worker calling me, as I struggled to squeeze my feet into my boots.
“Wait ‘til Bec hears about this!”
“Oh, I know. I guess that’s why the idiot keeps calling me, she has already encountered the wrath of Bec!”
We both laughed as I finally was ready to go. Once in the car, we sat for a moment, letting it warm up, then set off in the wrong direction.
Jane, tea in hand, and me craving coffee, made our way to the Nuclear Medicine department, I was given a hospital gown, and an IV was put in my hand. The nurse doing the IV was very complimentary of my bulging veins, and the needle was inserted easily.
I lay on a gurney waiting for my turn in the scanning room, when my phone rang.
“Yes?”
“Is this Penny?”
“Is this the social worker again?”
“Yes, we really need...”
I hung up and blocked yet another number.
I had left my belongings in a little cubby and was escorted into the room with the enormous machines. Some actual nuclear material was put in my IV, and I asked if this would give me superpowers, which I was sure every patient asked, but sadly no, I would not be able to stretch a lot or fly.
Bummer.
I was told, however, that I would be given a card because if I was to cross the border, I would set off nuclear detectors. I wasn't really planning on any holiday travel, so I never got to the chance to see all that excitement in action. The test was the first of two, and I would have the second part tomorrow. It was quite a long test, but all I did was lie down, taking breaths and holding them at various times.
The real difficulty was having no coffee for so long.
After the test, with some spare time on our hands, Jane and I made our way to the cafeteria for her tea and my water. Jane had a chat with her husband, and I called Bec to rant about the social worker. Bec was furious at the social worker. She had already spoken to her supervisor, and action was being taken. That was, apparently, why she kept calling me; she was hoping I would step in and defend her so she wouldn't lose her job. Fat chance of that happening. Bec had called the supervisor again, threatened them with a lawsuit if they didn't keep Dad and do some tests.
Snack and phone calls completed, we made our way down to the pre-admission clinic to meet with an anesthesiologist. We met with two, and they went over the whole surgical process and how important it was to follow NPO when I was called in for a transplant. NPO stands for “nil per os” or 'nothing by mouth', no food, no liquid, no nothin'. They have to put a breathing tube down your throat, and there is a risk of throwing up into your lungs (aspiration). Since surgery may last over 10 hours, the anaesthetist maintains all bodily functions as the drugs might suppress them. It sounded very involved, but the anesthesiologists seemed very professional and confident, so our fears were allayed.
Jane and I had another snack in the cafeteria. It seemed there wasn't very much to do other than wait and eat between appointments.
Our final destination today was the 8th floor for a meeting with the surgeon. This was the one I was quite interested in, but I’m afraid I didn't make a good first impression.
The surgeon pointed to the walker and said he never wanted to see that again. It turned out that my stress-test results were his number one concern. He explained that this surgery was very stressful on a body and he didn't want to end up murdering me on the table.
My grip strength was around 30, and the surgeon said his was some fantastical number like 200 or something, and mine was kind of pathetic. Feeling a little deflated, he emphasized the importance to keeping my strength numbers high by doing lots of resistance exercises and eating a lot of protein. He explained the protein grew muscles and was used for all kinds of processes. Also, unlike the other nutrients, about half of protein was accessed without the liver, so you got most of your energy from protein when your liver had failed or was failing. He also explained that the gallbladder was removed along with the liver, so my defective gallbladder could wait for a transplant. He talked as if a transplant was a done deal, and I found that very encouraging. Despite some of his comments about my walker and my grip strength, I found him quite engaging. His demeanour was rather like Dr. House, and that gave me confidence.
I really wanted to make a good impression on everyone. Carolyn, the transplant coordinator, explained that once every two weeks the transplant committee met to go through the files of possible transplant recipients and the decision hinged on aspects like robustness, surgical viability, family care, substance habits, MELD score, decline rate, age, and existing diseases. The committee approach mitigates bias as much as possible, but being nice never hurts either.
After meeting with the surgeon, we were done for the day, and there was only one day left, mostly looking into my heart health.
That night, I enjoyed another serving of fish and chips and a carton of milk for dinner. Jane offered me some chocolate brownie type thing, but I thought chocolate contained caffeine and I didn't want to risk it, besides, I was pretty full.
The next day began and finished early, and Jane wondered if we should head home the tomorrow or the Saturday. I opted for the Saturday because though my test week had been better than I feared, it still wore me to a frazzle, and I didn’t want to rush back to the hotel, then rush home all in one day.
As usual, we sat around discussing the day, and we both laughed at the Surgeon. Those surgeons are definitely a different breed. I think the surgeons must also be superhuman, doing a 10 hour operation. I know they take breaks, at least I hope so, but even at my most fit I could never play music for over 6 hours straight.
The last day started out auspiciously, because we didn't get lost on the drive to the hospital. I had a 7 am echocardiogram followed by an ECG. I was given several injections to make my heart rate increase and decrease. Sort of like doing a workout without the effort. They did have a stationary bike contraption, that let you lie down and pedal to increase your heart rate, but my legs were just too puffy from the edema to raise, and my feet couldn't fit in the stirrups. So, the injections were used instead.
We had a quick break before the last part of the Nuclear Medicine test, but we decided to go directly to the imaging department and wait. I think we were both eager to be finished with this week.
The second part of the test took longer than yesterday, because I had to drink something and wait an hour for it to make its way to my liver. After that test, however, I was given a ginger-ale and could have coffee again. I picked up a coffee at Tim Hortons, relieved to be finished the week from hell.
After arriving back at the hotel, Jane rested briefly before going to check out some more Thrift stores. I lay down and fell asleep.
Jane returned in the evening with sub sandwiches and drinks, including a coffee for me. I love my sister.
As we ate, Jane told me the recent updates in the adventure of Dad. Vick and Bec had found a room in a town near Vick, and were moving him there directly from the hospital. Apparently, it had taken herculean effort to make this all happen so fast.
As a result, Jane would take me to my place to wait and recover. She asked if I thought I would be okay on my own. I assured her I would, because I'm very low maintenance these days. I mostly sleep and eat a little, drink Lactulose, and sleep some more.
We left the hotel around 9 am because Jane had to catch a train in the late afternoon and that would give her plenty of time as she was leaving the car at Dad's place and taking a cab up to the train station, along with her booty of Thrifting treasures.
It was strange, so much had changed in the course of a week. Dad had been hospitalized and moved to a retirement home, I had been assessed for a liver transplant and was now going to stay at my place, by myself.
Saturday, afternoon, as Jane’s taxi drove away, leaving me alone, I had a momentary bout of loneliness, but it did feel good to be home without the responsibility of taking care of Dad and knowing I had completed all those tests and now my only job was to keep alive
and wait to get a liver.
Monday morning, Molly arrived right on time.
That was impressive, because she lived three hours away and she arrived at 7 am. We stopped at Tim Hortons on the way up, though I was on NPO, Molly needed a coffee desperately. The drive up to the regional hospital was pleasant as Molly filled me in on the goings on in her life.
It was a snowy day, but not blowing, so that was a blessing. When we got to the hospital, Molly got herself another coffee from the Tim Hortons in the lobby.
On the second floor, we went straight to the day surgery unit for check-in and were greeted by a misery of a human who seemed to hate her life. Before a word was spoken, she shot a grim look to Molly and barked, “You can't bring that in!” waving a pen at Molly's coffee. “Yes, I know.” There were two waiting rooms. The first one was where caregivers waited and patients were taken to the next waiting room and prepped for surgery. Drinks were allowed in the first waiting room, but perhaps the gargoyle on the desk was angry because she didn't have a coffee. Molly and the desk troll argued about the coffee for a while until I had had enough and shoved my healthcare card against her plexiglass enclosure. She snorted and took my card and told me to proceed to the next room, but declared loudly, “No drinks are allowed in that area.”
“Okay,” I said as I rolled my eyes at Molly. She found a seat and sat down with her coffee, and I made my way through the hallowed doors into the second waiting room.
Everyone was very nice beyond that first guardian of the waiting room. I was handed a plastic bag and a gown and told to remove all my clothes, except underwear. I was told to put my clothes and any valuables in the bag, except my phone. I was told I would be returning to this cubical, so there was no need to lock everything in a cubby, and the bag was just to keep everything clean.
Once changed, I opened my curtain and lay on the gurney. The layout of this area was like a big wheel, with the nursing station at the hub. After a few minutes, a nurse came and introduced herself, took my weight and vitals and went through the pre-op questionnaire. I gave her my medications list paper, and she was delighted I was so organized. An IV was put in my left hand because for the angiogram they needed my right hand. This procedure made me nervous because I had foolishly watched a few YouTube videos, and they had all only increased my fear. It looked painful. I don't like pain. I have a high threshold for pain, but I still don't enjoy it very much.
The surgeon stopped by and explained the procedure and asked if I had any questions. “Yes” am I going to get something to help me relax? I'm quite nervous.”
“You don't really need anything.”
That was disappointing.
“That is disappointing.”
He smiled and said, “We'll see what we can do.”
“Thank you.”
A few minutes later, I was rolled into the operating room, and my fears increased. This seemed a bit intense for a test. Everything was wrapped in clear plastic, and there was a huge monitor hanging over the operating table. I shifted onto the table myself, which was probably a relief for the nurse, who was half my size.
The surgeon came in and we began.
An impressive needle was put in my wrist, and the surgeon told me he was going to inject something that would burn for 10 seconds. This chemical made the vein dilate a lot so that a large-bore needle could be inserted.
“Ready?”
I nodded.
MOTHER FUCKER! THAT HURT!
I felt like Paul Atreides with his hand in the Gom Jabbar.
“10, 9, 8, 7, 6, 5, 4, 3,” and the pain completely stopped “2,1”
“Okay, I'm going to do that injection again. Ready?”
I didn't really respond before the burning pain literally, coursed through my vein once more.
“Good, that's the difficult part. You did well.”
I breathed a sigh of relief, and then the surgeon started describing what was on the big screen. He injected the dye, and I could see my heart in all its glory, pumping like a trooper.
It took about half an hour for him to complete the test, describing everything all the way. It was sort of interesting, but I was happy when it was over.
My heart was great. He said there was a little bit of plaque buildup, but very little, and certainly not a concern. Yah! I was cleared by the cardiothoracic surgeon for a transplant.
The giant needle was removed, and a big cuff was cinched up over the wound. Over the next hour, the cuff would be loosened a few notches every few minutes.
I was wheeled into another room, and after an hour the cuff was removed and my wrist was tightly bandaged with instructions to keep it on and dry for three days. I was given a clear plastic wrap with elastics at both ends, like a shower cap, to put over my wrist when I had a shower.
Then I was taken back to my cubical in the pre-op area and given a ginger-ale and told to wait an hour for the anaesthetic to wear off. Molly was escorted into my area and sat in a chair, quietly talking as my head cleared. Eventually, I was released, and we headed home.
Once home, I was drained, so Molly went to get some fast food. I wasn't up for cooking, or sitting in a restaurant or anything, and when she came back with Burger King food, I was asleep. The smell of food woke me up, and we had our lunch, then she quickly tidied up a bit and left. Molly had work the next day, and I was content to go to bed and nurse my sore hand. I fell asleep within a few seconds and resumed my waiting and holding on, hoping I could get a new liver.
Before it was all too late.
I took a taxi to the local hospital.
I was starting to know my way around and went straight to the Imaging department, checked in and prepared to wait. As always, I had my essentials in my backpack.
A shawl since hospitals are always cold and the medical staff often need access to your arms, so a sweater or hoodie is a hassle.
A bottle of water, because it costs $2.50 from the vending machine at the hospital.
My journal
A couple print outs of my medications list.
Bluetooth headphones. I like headphones rather than earbuds because people can see you have them on your head, so they won't bug you... as much. Though, as on a plane, I seem to attract people who have nothing better to do than sit in my personal space and tell me their life's story.
Bluetooth headband-headphones. If I have to stay over night I can put these on a play rain sounds to drown out all the noises. Plus, they can cover my eyes, like a sleeping mask.
A small battery charger.
One day worth Medications.
Phone with lots of downloaded music because I'm too cheap to have a big data plan and the Wi-Fi at the hospital can be iffy. I usually just listen to my personal playlist or play Baltaro.
The Ultrasound waiting room is usually dominated by pregnant women and nervous partners, and today was no exception. I wormed my way into the only empty seat with a few disproving glances. I always wear a mask when I'm in public because I live in fear of a liver becoming available, only to miss out because I've caught a cold or something. I think it's well worth the occasional scowls I may receive to possibly save my life.
It was rather a long wait, but I had my headphones, so I just listened to music, dozing a bit and willing my nose to abstain from bleeding. Come to think of it, that was another benefit of wearing a mask, nobody could see blood dribbling down my face, and it was having a very positive effect on my clothes.
“Number 84922?”
Oops, that's me.
I quickly gathered my backpack and put my headphones around my neck as I fished around for my cane.
“Penny?” The technician said as she escorted me to room 2.
“Yes.”
“Great. Just have a lie down on the table for me and lift up your shirt a bit. I'm going to scope your tummy area.” She then spread a towel below my tummy to catch any stray gel. “This will be a bit cold as I put the gel on.”
“Mmm, yup.”
She scanned me for 20 minutes or so, mostly focusing on my liver area, but a few other areas as well.
“All done.”
She handed me a towel to wipe myself and said. “I will send the results off to your hepatologist, and he will let you know what's going on with your liver. Any questions?”
“No, thank you very much.”
“You’re welcome. You can throw that towel in the bin when you are done and then you go out and turn right to get back to the waiting room. Have a great day.”
And with that, she was gone, and a moment later, so was I.
I was a bit thirsty, so I grabbed a double/double from Tim Hortons, then sat at a table and finished my coffee before calling for a taxi. It's hard to use a cane, carry a backpack and wrangle a coffee all at the same time. Finished, I called for a taxi, made my way home and went to bed.
Another busy day.
I took a taxi to the local hospital.
Dr. B., the hepatologist, said my ultrasound wasn't great. Apparently, my gallbladder was still acting up.
“How are you feeling?”
“Super tired, and I get dizzy a lot.”
“Are you taking your Lactulose?”
“Yes, and I hate it.”
“Everyone hates it.”
“Can I take too much?”
“No, you should take it as much as you need. It will help with the dizziness because the ammonia buildup is a concern.”
“Okay,”
“Just keep on taking your meds and try to eat as much protein as you can. Any word from the transplant-unit?”
“No, not yet.”
“Are you on the list?”
“I don't know for sure, but I don't think so. I'm getting my vaccinations at the moment, and I have to have some more tests, on my heart, I think.”
“Yes, that sounds right. You are meeting with the dietitian next?”
“Yup.”
“Okay. I will send your labs off to the transplant-unit and let you go to your next meeting.”
Standing, I thanked Dr. B. and made my way to the dietitian's office.
These dietitians do love their charts and print-outs. I was handed a workbook of papers with a collection of foods clustered in various coloured geometric shapes.
“Eat protein” That summed up the whole meeting. 50% of protein bypasses the liver and is used for energy directly by the body. Carbs, Sugars, Fats, and the remaining protein get processed in the liver, and when the liver is not working, well, they do nothing, and that's why liver patients become so malnourished. Additionally, the fluid buildup in the abdomen made eating unpleasant and even painful, so if I was going to eat something, protein was the best bet.
I had 5 hours to wait before the CT scan and was trying to decide whether I should go home and have a nap or stay at the hospital and save the taxi fare. My barfy stomach decided for me, and I needed to go home to get to my own toilet. I really hate using public restrooms because even in hospitals they are not up to my cleanliness standards.
I called a taxi and waited impatiently to get home. Happily, the taxi arrived in just a few minutes, and the trip home was only a few minutes more. I hurried inside, threw my stuff on the floor and made a beeline for the toilet. I made it, but only just. It's very restrictive having so much waste coming out of both ends all the time. Either I have nausea or diarrhea and on very unfortunate occasions, both at the same time. I started wearing adult diapers, more for safety than anything else, and I carry a throw up bag in my purse at all times. The throw up bags I get at the hospital, and they have absorbent material inside, much better than the milk bags I had been using.
After my 'purge', I tried to find something 'Proteiny' I felt like eating. I finally settled on a small cup of raspberry Greek yogurt. The dietitian had badgered me about flavoured yogurt, saying I should have plain, but that is simply a non-starter. I think dietitians think their clients are not human and don't have likes and dislikes and will always be logical in their choices. Well, not this sicky, I can tell you.
I set my alarm and lay down for a rest.
The alarm went off, and I got up, washed my face, had a purge, a drink of water, and called a taxi.
Back at the hospital, it was CT time, and as I made my way to the Diagnostics department, I waved to a few other regulars at the hospital. Oh, dear, this place is becoming my second home.
The CT machine looked like an MRI machine, but a bit smaller, and there was a calming video of nature playing on a big screen on the ceiling. I had taken off some bulkier items, such as my boots and coat, but didn't have to be in a hospital gown. As I lay down, the machine behind the cowling started to spin. Once up to speed, the table started moving in and out, and I was instructed to breathe in, hold, breathe out, resume breathing. So it went for a surprisingly long time, perhaps 20 minutes.
I was helped up into a sitting position, which was difficult with the ascites that made me puff up, but I eventually managed the maneuver. With my hectic day complete, it was time to head home.
I took a taxi and once home; I threw up.
My yogurt reserves were running low.
Without leaving my bed, I ordered some groceries, mostly strawberry-flavored high protein drink and yogurt, then I drank some Lactulose and went back to bed. Generally, I was up and down to the bathroom every hour or so, and life had become rather like a very disappointing Matrix. Unsure of the day or time, I had become a slave to my endless phone alerts and calendar reminders.
Later in the day, my pathetic grocery order was delivered, and after tipping the delivery man, I went back to bed.
On Wednesday, I had an appointment to get my COVID-19 and flu shots at the local pharmacy. It was a very brisk day, and the snow was hard and crunchy, so extra caution was required to avoid falling on the moon-like surface. The trip took over twenty minutes, even though it was a mere two blocks distant. After arriving safely, I sat down on a chair just inside the door to rest and regain my energy. After half an hour of leaning on my cane and puffing like a steam engine, I declared myself rested.
The shots were quick, and I generally have little reaction, so there were still some small mercies in this 'dystopian hellscape' that was my life.
The walk home was with the wind, so it was a little quicker, and I rewarded myself with a hot chocolate once I got home and changed into warm PJs and a sweater.
Sipping my hot chocolate, I sat for a while looking out the window at the frigid January day, wondering if I was destined to see next year's Winter. I tried to push my darker thoughts away and keep positive. At least I was warm with a hot chocolate. I dozed in my chair and woke some time later with a sore neck and drool running down my face. Another picture perfect moment.
I wiped my mouth, hobbled into the kitchen and put my cup in the sink. At least by being so sick, I created virtually no dirty dishes.
A short bathroom visit including a nice hot face wipe and it was back to bed for me.
Being stuck in the doldrums for two straight weeks, with nothing to do but watch snow pile up, was driving me nuts, though we got a major snowstorm on Saturday. That was mildly interesting, although I slept so much that I was barely cognizant of the 'real' world anymore, and I may have dreamt the whole thing.
What I needed was a shower. Perhaps the hot water would wash away some of my moroseness along with my constant stink of ammonia.
I turned on the water, to let it warm up a bit. The edema in my legs and feet made it difficult to step over the rim of the tub and as I reached for the grab bar, my fingers found only air and suddenly I was lying in the tub, my legs, and arms akimbo, my head throbbing, and my ears ringing. There were three grab bars in my shower, but I had missed them all.
I lay there in a heap with water spraying in my face, head spinning. It was very uncomfortable. I tried to move, but couldn't, so I lay for a long while trying to figure out what to do next. Eventually, the water ran cold, and I had to do something or I would have a very high water bill. With effort, I managed to move my right arm out from under me and used it as leverage to sit up. I sat for a minute with cold water spraying in my face.
This was becoming intolerable.
I felt the top of my head and though there wasn't any blood; I had put a sizable dent in my skull. Getting my left hand free was an effort, but eventually, I rolled my top half onto the tub ledge, then fell on the floor... Phew! At least I wasn't being pelted with freezing water. I slithered around to the vanity and somehow pushed against that and got on my feet. I stood catching my breath as I started shaking from the cold, exertion, and fear.
I turned off the water, towelled off and fell into bed, naked. Having likely suffered a concussion, I had spent a week's worth of energy and couldn't get dressed or call for an ambulance. I just lay there, damp, with my head spinning.
Hours later, I woke up. I had thrown some blankets over myself and was buried in pillows, with a throbbing headache. I really had to go to the washroom. Grabbing one of my canes, I wobbled to the bathroom. It still looked like a crime scene with towels all over and pools of water on the floor.
Avoiding the carnage, I made my way to the toilet, sat,
and sobbed.
Time for another ultrasound of my thyroid.
Hi Ho, Hi Ho, it's off to the local hospital Diagnostic Imaging I go.
I really had to bundle up today because of the icy wind. The taxi driver let me off and said, “Good luck, Penny!” I know all the taxi drivers now, and they always wish me well.
I hadn't eaten yet today and thought briefly of grabbing a doughnut but thought better of it when I saw the line. In the ultrasound waiting room, there seemed to be less pregnant people today, so the wait was very short.
“Number 49923?”
That's my random privacy number.
“Penelope?”
“Yup, Penny.”
“Okay, Penny, we are in room 3.”
“This should be quick as we are just looking at your thyroid, which is in your neck.”
“Okay.”
She put a little cold gel on my neck and did her scan in just a couple of minutes, handed me a towel and said I could wipe the gel off, and we were done.
“Thank you,” and I left, turning right down the hall as last time.
I didn't feel like a doughnut or coffee now and just wanted to get home and lay down, so I called a taxi, braved the cold, got home and fell into bed.
On February 4th, Vick came to drive me to my appointments and also to have a visit. My CT scan had shown a small lump in my left lung, and they wanted to make sure it wasn't cancer. I asked Carolyn if I was on the transplant list yet, and she said no, there are still some tests I need to pass and also they need to make sure I don't have cancer because once I'm on anti-rejection medication any cancer would grow like wildfire with my immune system disabled, hence, the meeting on Thursday with the Thoracic surgeon, Dr. I. This first appointment was a consultation only, so there was no preparation required.
I called a taxi and was off for my second TB test at the vaccinations clinic. Vick couldn't make it until later that day, which was fine because it gave me something to do while waiting for company. A different technician did the injection, and she was nice, but very quiet. Sometimes I blather on, and I can see it in people's eyes that they would rather I just shut up. So I did.
The roads were a little icy, and I thought the taxi driver was a little aggressive, but ever the good passenger, I shut up for the second time today. Relieved, I made it home safe, struggled up the unshoveled steps and flopped into my chair. I fell asleep.
When I woke, I was all wet from sweating in my winter coat and hat, and thought a shower would be good. I was still traumatized by that fall in the tub, and all subsequent showers I had put my phone and cane within easy reach and had bought a rubber anti-slip pad for the tub, but still, it made me afraid. I briefly thought of waiting until Vick arrived, but she was still a few hours away, and I was so wet I decided to brave a shower.
All went well. I had part of a protein drink and a drink of water, put on a clean and dry nightgown and went to bed.
My sister, Bec, had bought me quite a few nightgowns, pyjama sets, and bath towels, and when Vick came for a visit, she would often wash everything, so I had a vast supply of clean bedding to wear. It's amazing how something like that can make you feel so much better about things. A hot shower, when you don't fall, a fresh towel and fresh clothes makes one feel almost human.
Vick texted me that she had arrived, and I got up as I heard her rustling around. I had an extra door key made and had a hiding place that family and neighbours knew about, so if I ever had a problem, emergency services could get in without kicking down my door.
“Hi Vick.”
“Hi Penny, how you doin'”
“Yah, good. Was your drive okay? It's a bit icy on the roads.”
“Yup, it was fine. I stopped and got some groceries. Do you like corn on the cob?”
“Mmm, Yes, I love it.” The marvels of the world, I thought. Here we are in the clutches of Winter and have corn on the cob. I also think that about my medical situation. If this had happened a few decades ago, the prognosis would have been very grim. I love progress.
“What have you been up to?” asked Vick, as she filled the fridge and cupboards with food.
Picking at a package of cookies, I said, “Oh, I went for my TB test this morning and had a shower.”
“Wow! Action packed.”
“Indeed. I'm whipped.”
“Do you want to lie down?”
“No. I'm good for a while yet.”
“How about some Tea and those cookies you are opening?”
“Sounds great. Was I too obvious?” I love shortbread cookies.
“Yes. Yes, you were. You go sit down and I'll finish with these groceries and make some tea for us.”
“Okay, thanks.”
I wandered into my front room and plopped down in front of the computer. When Vick came in, I would help her twirl the chair around, and by help I meant point and get in the way.
A moment later, Vick entered with a teapot and two mugs. “You're facing the wrong way.”
“Yes, I need help to swivel around.”
Putting the pot and mugs down, she shooed me out of the chair, and I promptly stood in her way.
“Move!”
I moved a bit, and Vick swung the chair into 'visitor position'.
Back in my chair, I accepted my tea and 3 cookies.
Vick sat, and we chatted about our kids and the general goings on in the family. I asked how Dad was doing in his new digs? “Surprisingly well,” said Vick, munching on a cookie.
That was a big relief to us all. Dad seemed to be doing well and was in a safe place and liked it well enough. He was playing scrabble and going to musical concerts and seemed pretty good, given all the turmoil of late.
It turned out that for all the noise at the local hospital to get him out, and their insistence that he was fine, he had had a brain bleed. The ‘practitioners’ at the hospital, hadn't bothered doing anything with him other than complain that he was taking up a bed. Once Vick and Bec had moved him to the new home, the staff discovered Dad was in serious condition and they had to send him, by ambulance, back to the regional hospital for an operation. The neurosurgeon cut open his skull to relieve the pressure and fix the bleed. So, after all their caterwauling at the local hospital about how fine he was, they almost killed him.
This was all kept from me at the time because everyone thought I might be overwhelmed with even more bad news. I appreciated that. Sometimes, it's best to be out of the loop for your own sanity.
Happily, Dad recovered amazingly well, and was transported back to the home. To this day he is still full of stories of 'the crazies' in the home and what food is on offer. Vick takes him out shopping, and they like to go to a cafe near the water and have tea. I know Dad misses Mom terribly, but he is carrying on in his usual stoic, Presbyterian way.
“... ya think?” That brought me out of my thoughtful reverie.
“What? Sorry, I missed that.”
“I said, do you think I should set your inflatable bed up here or in the bedroom?”
“I think the bedroom would be best”
“I can do that now if you want?”
“Whatever you like, but I can sleep through anything. All the lights could be on and a brass band playing in my ear and would fall asleep...it's a gift.”
Eventually we ran out of things to say, and I headed off to bed, stopping of course at the washroom. I was still taking water pills and Lactulose, so besides bed; the toilet was my new favourite spot. Sadly, the ammonia and other unprocessed waste chemicals made my urine similar to the blood of a Xenomorph in Alien.
Pure acid.
I bought a portable bidet to rinse off the caustic substance from my undercarriage. I also noticed that, since noxious chemicals were oozing from my pours, dogs were very aggressive towards me. They would bare their teeth and threaten me to stay away. I guess dogs, being pack animals, are protecting their pack from danger, and they smell my illness as a threat.
“Look out, here comes a zombie or perhaps a terminator pretending to be human. Stay Back!”
To battle my noxious, rotting smell, I had begun taking many showers a day and also brushed my teeth constantly to deal with stinky breath. While waiting for a transplant, I had to keep my teeth in good shape, because it was not recommended to go to a Dentist, except in an emergency.
A few hours after I had gone to bed, Vick turned on the pump to blow-up the mattress, and that woke me up enough to realize I had to go to the bathroom.
“Sorry, did I wake you?”
“No, I have to go to the bathroom.” I said flatly.
When I came back, Vick was still struggling. Apparently, the mattress was about two inches too wide and was caught on something. Suddenly it popped free and seemed okay, though we both wondered if the mattress had been punctured..
“I think it's okay.” Vick declared.
“Good. I'm going back to sleep.”
“I'm going to watch Netflix on my phone, if that's okay.”
“Sure, ya, it honestly doesn't bother me. I generally sleep with the lights on because I'm afraid of the dark.” And with that, I was off to slumber-land.
We mostly just kinda bummed around on Wednesday. Vick went for a walk because she's a nature girl and finds staying inside oppressive. I just did my usual semi-conscious thing.
On Thursday, we had to get up and on our way early. I had a 9:00 am appointment with the thoracic surgeon at the regional hospital, which is at least an hour away. Allowing for problems, we left home around 7:30 am. I tried to spruce myself up with some makeup and put my hair in a ponytail. I chose a nice warm brown dress and vest, a few bangles on my wrists, and some silver earrings. Even though I was horribly sick, I found that if I looked as well as I could manage, the medical establishment treated me better than if I looked near death. I think if you look too sick, everyone internalizes a feeling that you're just not trying hard enough to be well. Everyone roots for the fighter and gives up on the whiner feeling sorry for themselves. Put on a happy face.
We had been really lucky with the weather this winter. Though it was cold, the roads were clear, and it was a crisp sunny day. The ride up was uneventful, and of us all, Vick has the best sense of direction. For some reason I don't trust GPS, and worst of all, I change my mind in the middle of travelling. I often say, “Well, maybe we should go this way or that.” Then the GPS says, “Make a U-turn”, so obviously, I am causing more grief than help. If the driver does listen to me, it isn't long before I have directed them into a construction zone, a dead end, or a lake.
However, despite my best efforts, we made it to the hospital in good time, and we both got a coffee as a reward. There was a sign on the door to the office of the thoracic surgeon saying, “No Food or Drink”, so we both quickly scalded our throats trying to down our coffees. The nurse took my information and directed us to the waiting chairs. There we sat for half an hour, regretting not having gone to the cafeteria to get our coffees and something to eat. Finally, we were shown into a little exam room and told to wait. As the minutes ticked by, I became more nervous. The lump in my lung could stop the possibility of the transplant, and I needed the thoracic surgeon to sign off before I could proceed on the recovery road.
Dr. I and an intern knocked and came into the room.
“Which of you is Penny?”
I raised my hand.
“Hi Penny, I'm Dr. I and this is Dr. O., and you are?” he said, turning to Vick.
“I'm Penny's sister, Victoria.”
“Excellent.”
“Well, Penny, I've looked at the CT scan and, as you know, there is a small lump in your left lung. It probably isn't cancer, but we have to make sure, because, I'm sure they told you, once you are on anti-rejection medication, cancer becomes a real risk.”
“Yes.”
“Excellent.”
“Usually this type of lump is caused by a fungus that your body can't expel and so it surrounds it in fat cells to stop it from spreading.”
“Like a pearl in an oyster?”
“In a way, yes. The fungus is naturally occurring, and in fact most people have some in their lungs. Do you garden?”
“No, not really.”
“Do you walk in nature often?”
“Yes, I used to go for a walk in the forest every day, in the before time, in the long, long ago.”
He smiled at my South Park reference and continued.
“That's probably where it would be from, but we have to rule out cancer, so I'm going to set you up with a PET scan.”
“I don't know what that is.”
“A PET scan is a CT scan to get a 3D scan of your lung, but first we inject a liquid high in sugar that is mildly radioactive. Cancer is very energy hungry, so it will feed off of the sugar and show up in the scan as a bright spot. If the lump lights up, it's an indication of cancer, and we will have to do a biopsy to see if it's a problem. However, if the PET scan doesn't make the lump light up, it means it isn't active. We should still keep an eye on it in the future, but for the moment it would allow a transplant operation to go ahead.”
“Excellent,” I smiled as I mimicked his favourite expression.
He smiled as well.
“Any more questions?”
Vick raised her hand.
“Yes, Victoria?”
“Will Penny need someone with her for the PET scan?” Good question. I hope not; it's such a hassle for someone to come and be with me for these tests.
“No, it's just like a CT scan, only we inject that sugar/radioactive material first.”
“Great. Any idea when the test would happen?”
“Soon, because I know this is holding up the transplant team, so as soon as we can make it happen. The radiologist and I will review the PET scan and make our recommendation to the transplant team.”
“Any more questions?”
Vick and I looked at each other and shook our heads.
“No, I think that is all very clear. Thank you.”
Dr. I and Dr. O. said their goodbyes and left.
We stopped at the nurses' desk and asked if she needed anything, like phone numbers or anything. She said she had all that and someone would call from the Radiology Department with the time for the PET scan.
We thanked her and left.
On the way out to the car, we picked up some coffees so that we could drink at a more leisurely pace and headed home. We thought about stopping in for some fast food, but it was about 11:00 am, and that is an awkward time. Too late for breakfast and too early for lunch. Besides, I would be hungry, order food, have one bite, and be unable to eat more, so it always felt like a waste.
Once we got home, Vick made some soup and sandwiches while I availed myself of the facilities. All that coffee. We had a couple of hours before I had to get my Thursday vaccinations and get my TB test read. Vick tidied up and off we went. This day was really wiping me out, but tomorrow I could just rest.
Vick sat in the beautiful lobby of the Vaccinations clinic, browsing health brochures, as again, I made my way to room 3. The TB reading was very involved and I was getting worried she was seeing something I wasn't, but in the end she said I was clear. That's one of the worst aspects of waiting for a transplant, knowing that anything can throw you off the track. If your TB test is positive, you are off the list. If the lump in your lung is cancer, you are off the list. If you get the flu, any surgery is cancelled. Your life is hanging in the balance, and anything from an accident to a summer cold can end your chance at survival. I feel like I'm under the sword of Damocles every day.
I finished the visit with three injections in my right arm and two in my left, and was then free to go. No screaming children today as Vick and I seemed to be the only people in the building. Even the receptionist had disappeared. A short drive home and that rough day was complete. I went to bed.
Vick had to get back to her life the next day, and though it was horribly sad to see anyone go, it did mean I could sleep more. Vick had spent the morning doing laundry and organizing food for me, which was unbelievably helpful. After a lunch of chicken and rice, Vick loaded up the car, hugged me goodbye,
and was gone.
A black hole appeared outside my window.
At first, it was just a small black hole, but it grew in intensity, and to my horror, it started sucking things out of my room, through the window, and into the void. First my socks flew off the floor, followed by my cane. Oh, that was my favourite cane. Next, my air cleaner vanished into a sea of black, and then, things became really serious. My bed shook, and my blankets were violently ripped off my body and squeezed through my window into the awaiting maw of nothingness. A whistling wind made my ears quiver, and I clutched the bed for dear life. My bed moved towards the window, and my grip became tighter.
That swirling horror would not take me without a fight.
I screamed.
Minutes crawled by as the black hole and I battled for supremacy.
Finally, the black hole relented and began receding back into the night. My ears were still ringing, but I could loosen my death-grip on the bed. Things the black hole had stolen returned. My bed was back in its original position, and I was once again covered with blankets. I was soaked with sweat, but other than that, all was quiet and normal.
Ammonia had built up in my brain, which had sparked that hallucination. I was going to have to take even more Lactulose, unfortunately.
I fell asleep.
Wednesday, Feb 14th, Happy Valentine's Day!
The morning found me on the toilet, purging burning ammonia. The taxi was due to arrive in a few minutes, and I was desperate to finish, have a quick rinse and be ready to go. I had already packed my backpack and done my hair and makeup. Finally, after a rinse with my portable bidet, I quickly put on fresh clothes, worried my feet into my boots, donned my winter clothes and made it out the door just as the taxi arrived. Good for me.
My appointment at the liver-clinic wasn't until 10 am, but I had to have blood-work and they opened at 8 am. If I got to the regional hospital early, I didn't have to wait as long, and also it gave the lab a few hours to process my blood tests and get them to the liver-clinic.
It was a blowing snow today, which always made me nervous, but rarely seemed to bother the drivers. We chatted about the weather, construction, and motorcycles. You never know where a conversation will go, and I'm always relieved when it doesn't lead to politics. Everyone's opinions are so strong, and when they are driving and your life is in their hands, you are not really in a position to disagree. I find myself “Mmming” a lot.
We arrived at the hospital, I tipped the driver and gathered my growing collection of 'essentials', and threw my backpack over my shoulders, grabbed my cane, that the Black Hole had generously returned, and went into the familiar embrace of the hospital. After taking the elevator to the 4th floor, I made a beeline to the blood-lab. They took my health card in exchange for a number and directed me to have a seat in the waiting room.
My number came up quickly, and with my health card returned, I was motioned to a cubical. Dumping my purse, backpack, coat, hat, mitts, scarf, and cane in a heap on the floor, I sat in the chair and waited. The cheerful phlebotomist entered with a long sheet of stickers. She asked my name and birth date as she attached stickers to vials of various colours and a paper with the list of tests.
“Which arm do we want today?”
“Either/or — apparently it's difficult to get blood from me as my veins roll.”
“Left it is then.”
I smiled.
She was very good. She got a vein on the first try.
“All done. I'll shoot these samples to the lab, and they will be ready by the time you are at the liver-clinic.”
“Super, thank you.”
“Sure thing, take care, Penny.” and she bubbled away with a tray of vials, like Glinda the Good Witch.
I got myself reassembled, though it being warmish in the hospital, I carried my coat in my free hand, and made my way to the cafeteria on the 3rd floor, but first a bathroom break.
I had put all my stuff on a table in the cafeteria before getting food because a few weeks before; I had dropped my croissant on the floor, and I definitely didn't have a 3-second rule in a hospital. Anything that touched the floor there was garbage. That day, I got a double double and an apple fritter. Not super nutritious, but I liked to treat myself to something when at the hospital. I sipped my coffee and watched the wind-blown snow swirl around the buildings as people hurried as best they could. Some in wheelchairs looked lost in the wind.
I still had some time to kill, so I went down to the family waiting room in the surgical wing. I had discovered they had nice soft lighting, big clean washrooms, and deep leather waiting chairs. Usually there was nobody there, and even if there was, people were always quiet and kept to themselves as if any movement would doom the operation of their loved one. That day, it was empty. I sat and dozed a bit until about 10 minutes before my appointment.
Up in the liver-clinic, I had waved to the keeper of the time, Grahame, and he had waved back. I didn't need to check in anymore, as with most at the clinic, I was a regular. There was an ongoing jigsaw puzzle on the table, and progress seemed slow. I ignored it and took out some knitting. I knitted a lot of socks because it was one of the few activities I still found possible.
A few minutes later, I was called to be weighed. I dumped every extra pound of clothing I could while retaining my dignity. Not my boots though, they were so hard to get on and off I left them as long as possible. My weight was up, but it was water weight.
Next, I made my way, carrying all my clothes with one arm and using my cane in the other. I really liked the general philosophy of the liver-clinic. I was expected to do as much for myself as possible. Though we were all terminally ill, we were still treated like independent people and not pitiful lepers.
I dumped myself in the chair, and the nurse took my vitals, which were good, and then I had to take off my right boot so she could check my Pitting Edema. They often did both feet, but the struggle to get my boot off was so arduous that just the right one was deemed sufficient. The nurse pressed her fingers into my swollen feet, to see how deep and long the indentations remained. We both got bored with waiting and just assumed it was level 4. My legs were about the same, although my left recovered a bit quicker. That was very normal because the liver was on the right side and so, generally, the worst things happened on that side. Satisfied, the nurse left, saying, “The doctor would be in to see you in just a minute.”
“Thank you.” I just leave my boot off, because the doctor will want to poke my puffy foot as well.
As the minutes ticked by, I took out my journal, entered the date and reviewed the questions I had, as well as the symptoms I had been experiencing.
The hepatologist intern arrived, and we began reviewing what had been going on with me. Usually an intern took all the information and filled out the forms, then went to have a consult with Dr. I, who later came in to review and discuss. It was a good way of proceeding because sometimes I might forget to ask something and this way I got two kicks at the can, so to speak, which was helpful for me because I always attended these appointments solo.
“Take more Lactulose.” was pretty much the summary of our meeting. I was already taking Rifaximin to protect my brain from ammonia, and I couldn't take more of that, so Lactulose it is.
Vitals recorded, symptoms noted, and medication adjusted, I was given a card with the date and time for my next liver-clinic visit and sent on my way.
I went to the cafeteria, called for a taxi and bought a cup of coffee. The taxi had to be sent from my hometown to the big city, so I had about an hour to wait. I put my stopwatch on my phone and drank my coffee. With time left to wait, I went down to the surgical waiting room and rested while making a few additional notes in my journal. Once my stopwatch reached 45 minutes, I made my way to the main entrance. There were chairs in the main waiting area, but I think they were designed to be as uncomfortable as possible. Thankfully, my taxi came within a few minutes,
and home was only an hour away.
I woke up with vomit in my hair.
Considering I ate so little, I sure did produce an insane amount of barf. I hadn't really wanted to wash my hair that morning, but now I had no choice. My hair had become extremely thin, apparently due to malnutrition. The hepatologist had told me that the body saved its reserves for dumb things like keeping your heart beating, rather than growing rich, luxurious hair.
My hair did dry quickly and, as a result, was very easy to maintain. All cleaned up, I stripped the bed and threw my pillowcase, nightgown, and bottom sheet in my small washing machine. Since I couldn't manage the stairs to the laundry facilities anymore, I had bought a small portable washing machine for just this type of occasion. I could only do a tiny load at a time, and I didn't have a dryer, but I found I could just hang stuff around, and it dried... eventually. While the washing machine did its thing, I did my makeup and got dressed. I was on NPO, so no breakfast, which always made mornings seem long.
Clothes finished and hung about, I waited for my taxi. I had called the taxi company the night before because they appreciated a warning for a long trip as one of their drivers would be unavailable for other fares for a couple of hours.
The taxi came, and it wasn't as cold today, so that was a welcome surprise. We chitchatted up to the hospital, and I was right on time. I was processed in and this time I did don a hospital gown. There seemed to be a lot of waiting involved in a PET scan. I was scanned first, then the sugar/nuclear mixture was put in my IV, then I waited, then I was scanned again. Other than the original poke for the IV, it was all painless. Some people experience a bit of burning from the sugar/nuclear concoction, but I was fine. It all took a few hours and then it was my: off to the cafeteria, surgical waiting room, main waiting area, taxi, home routine.
Once home, I put on clean PJ's and made my bed. I thought briefly of a meal, but decided I was more tired than hungry. I sent a quick email to let everyone know all was well, went to the bathroom and then went to bed.
Vick came up for a visit a few days later and while we were sitting having tea and a chat, Dr. I called and said the PET Scan was negative. He and the Radiologist agreed that all was well and there was no cancer in my lung, so the transplant could go ahead. He said he was writing a report to the transplant Team with his recommendation.
Well, that is a super-giant relief!
Vick and I celebrated with a meal out for fish and chips, and throughout dinner I kept saying, “I'm SO relieved!”
Vick smiled and nodded,
“I think this calls for cheesecake!”
I woke feeling grim to a grim world.
My illness was taking a toll not only on my physical self, but the roller-coaster of emotions was exhausting. I crawled out of bed and stood for a long while in the shower, preparing for another day. The hepatologist was still worried about my MELD score, so that meant an extra visit to the liver-clinic.
I put on my long brown dress today because I was feeling kind of down, and this outfit made me feel warm and snug. I had a quick breakfast of a protein drink and part of a yogurt cup. I didn't have coffee, because I decided I would get one at the hospital.
When the taxi came, I managed my front stairs with some difficulty. They never get shovelled. I really like my landlord, he is a nice guy, but he doesn't seem to believe in shovelling snow. Though I go out so rarely, it really isn't a big deal. Today, the stairs were a little slippery and tricky, but I managed. Another uneventful taxi ride and we were at the hospital. I think I may have dozed off a bit on the ride up, because it seemed surprisingly quick.
At the hospital, I went up to the blood-lab and went to take a number, but was ushered in right away because they were not busy today. At the cafeteria, I got a coffee and a bagel with cream cheese. I nibbled at the bagel a bit, but mostly wanted to take it home for lunch, so I wrapped it up and put it in my backpack, finished my coffee and decided to go up to the liver-clinic to wait.
I drifted away, listening to the soft discussions of the other patients.
“Penny?”
Slowly I rose from my chair, and wobbled unstably forward, thankful for the mask, as it hid my mouth, trembling from exertion. I nodded, dropped my gear and stood on the weigh scale. Up a bit. I collected my stuff and went to room 2 and slumped in the chair.
I was speaking less and less and mostly just sat with my own thoughts, partially from my illness but also because things were looking a little grim and putting on a sunny spin on my situation was exhausting.
The nurse took my vitals, checked my puffy feet, and I waited for the intern. This time the intern, and the hepatologist came in, so I perked up. Yikes, this might be serious. Had they found cancer? Had my angiogram found a problem with my heart? Had an additional complication reared its ugly head?
They checked me over, looked at my numbers and then Dr. H said, “The transplant Board had met on Monday, and you have been approved for transplant, and are now on the transplant list.”
OMG
OMG, I can't believe it.
“That's such a relief, I mean, Thank you.”
“That's just the first step, there is a long way to go, but you can do it, we all believe in you.”
“Thank you.” I said with tears of relief rolling down my cheeks.
“Carolyn will give you the details. Congratulations!”
“Thank you.”
They left, and I made a beeline for Carolyn's office, suddenly feeling significantly better.
Carolyn's office door was open, and she saw me lingering.
“Penny! Congratulations, I’m so proud of you!”
I rushed in and gave her a big hug, my eyes welling up with more happy tears.
“Thank you SO much!”
“You have worked very hard for this by going to all your appointments, getting all your vaccinations, doing all those tests and not giving up.”
“I'm so relieved, thank you.”
“Keep your phone with you because I or one of the other coordinators will call you if a donor liver comes in, and you will be asked to come to the hospital.”
“Absolutely, Thank you!”
“Other than that, keep taking your medications, try to eat a lot of protein and get some exercise, while you wait.”
“Yes, I will. Thank you again!” I said for the umpteenth time, then left.
I went to the cafeteria, called for a taxi and emailed everyone with the good news.
Email:
“I AM ON THE transplant LIST!!!!!!”
send
The “OMG” and “Congrats!” poured in.
When I got home, I started calling people. I got a landline as well as my mobile, so I don't tie up my cell if a call comes in for a transplant. I'm not good with putting people on hold because I always seem to hang up by accident, and besides, the landline was only an extra $5/month with discounts. I couldn't afford not to... girl math.
“Can you believe it?!”
“Yes, that's great!” said Bec. “Did they say how long you should expect to wait?”
“No, it's kind of random, though I do have some factors in my favour. One, I'm big. Apparently, that helps your chances. I guess it's like plumbing, you can adjust something to fit in a bigger space easier than you can a tiny one. Though it has to be close because the tubes have to fit together. I'm very technical.” Bec snickered. “On the downside, I’m A- which is a moderately rare blood type, but I think I can accept an A or O liver?”
“Did they say anything about the type of donor?”
“Well, gender doesn't matter, it's more the state of the liver and how the donor died. In Canada, there are two different categories for organ Donors. NDD (Neurological determination of death), that is a donor that is brain dead being kept alive by machines. The life support is turned off, and the organs harvested. Sort of the movie version.
The second type is DCD (donation after cardiac death). This happens when the person has injuries that are not survivable, but there is still brain activity. Life support is withdrawn when all measures have failed and the person dies naturally, but in a hospital. Two doctors determine that brain death has occurred, and again, in Canada, the medical team has to wait 5 minutes before double checking their determination. So, if someone is dead on arrival, have an unsuccessful resuscitation or the patient is in ICU and has an unexpected death, those are all uncontrolled deaths and the organs are not used. The problem is a liver is only considered viable 20 minutes after cardiac death (Warm Ischemia Time), so the clock is running and often the liver is then considered unusable by the surgeon.
So, if a person dies outside of a hospital, their organs can't be transplanted. Also, if there is trauma to the liver, like in a car accident, it can't be transplanted. Unfortunately, the liver is the second largest organ in the body, and isn’t protected by bones like the rib cage, so it is vulnerable to trauma. Carolyn advised me to prepare for possible transplant cancellation due to a less-than-perfect donor liver. They want to make sure the liver is viable before taking out your old one.” That’s probably a good idea.
“Wow, that's so exciting. I'm so happy that you are on the list, now, get some sleep!”
We both hung up.
I called my son.
“Penny?...”
“Penny?...”
Why is someone calling my name? Hey wait, why are these people in my bedroom?
“Penny?”
I opened my eyes, a crack. Wow, is it ever bright?
“Hi there, Penny. You are in the ICU. Your operation is over, and it went well. You have a breathing tube down your throat, and we are going to take it out now, understand?”
I nodded.
“Good, I will count to three, then I want you to blow out as hard as you can. Okay?
I nodded again.
“One, two, three... blow...”
A long curved tube rushed from my throat, and then Nurse 1 placed a small oxygen tube under my nose.
“How you doin'?”
I gave them a weak thumbs up, then coughed, wincing in pain.
“Don't talk; the surgeon is going to check you out, then we can get you a drink of...apple juice?”
I gave another thumbs-up.
The surgeon arrived moments later and had me follow a light with my eyes, checked several readouts and looked at the various tubes sticking out of me, then nodded with satisfaction.
“You did really well, Penny. How do you feel?”
Another thumbs up and a small smile were all I could manage, but that seemed adequate. After talking with the nurses for a few minutes, the surgeon left, while I drifted in and out of consciousness. Some time later, Nurse 2 arrived with a cup of something and said, “Here is some apple juice, but your throat will be sore from the intubation tube, so take small sips.”
I nodded.
Holding a small paper cup of apple juice, Nurse 2 put the straw in my mouth, and I took a few tentative sips. It burned a little, but was quite a relief to have some moisture in my mouth and throat.
With a nod from me, she said, “Enough?”
I gave her a thumbs-up, and then floated around the ICU for a bit, thriving on morphine and apple juice. Time seemed elusive in the ICU as Nurse 1 and Nurse 2 took turns stopping in to check on various readouts and give me a few more sips of juice.
Perhaps hours or even days later, a small group gathered around my bed to transfer me to the transplant-unit. Nurse 1 and Nurse 2 directed the ballet of tubes and hands to slide me over to a transport bed. An octopus of wires and tubes accompanied me on my journey, and before long I was drifting down the hallway and away from my ICU home. We all squeezed into an elevator and elevated to the 4th floor, where more people escorted me to my room. I waved goodbye to Nurse 1 and Nurse 2 and whispered, “Thank you,”
before a hazy cloud descended over my eyeballs.
A rustling sound woke me.
I was in the same room I had prior to surgery. I knew this because the whiteboard was listing to the left. Willing it to straighten itself had proven fruitless, so after a few minutes of failure I whirled my eyes around the room. Jane was sitting, sipping tea and reading quietly.
“Hi Jane.” I croaked. Looking up from her book, Jane smiled and said, “Finally, you are awake. I was wondering if I should go find a prince to give you a kiss.”
“No need for that,” I whispered flatly.
Jane smiled and put her book down and came to my bed and gave me a gentle hug.
“How are you feeling?”
“Okay,” I coughed and then winced at the pain.
“I must say, you have looked better. What happened to your hair?”
“I don’t know.” I said, feeling my head.
“I do!” said a firm voice from the doorway. “The OR nurse told me you were... ‘uncooperative’ under sedation during the operation.” The nurse breezed into my room. “Apparently, the surgeon grew weary of your untamed hair and tied it up in a blob with an elastic tourniquet. However, then you started pushing his hands away, and they had to put you in restraints. You were most unhelpful.”
Jane laughed. “Typical.”
“Indeed,” agreed the nurse. “I am Beth, and I will be your day nurse today.”
“What day is it?” I began, but another painful cough interrupted my question. Handing me a pillow, Beth said, “Hold this tight against your tummy when you cough, because we don’t want those stitches to pull out now, do we?”
No, indeed, we do not want that!
“You will have a cough for a few days, perhaps a week, as the residue of the anaesthetic works its way out of your lungs. Now, to answer your question, it is Tuesday, September 10th,” she said, popping open a can of ginger-ale.
“Really?” I came in on Thursday, and I’m no mathematician, but that doesn’t seem to add up.
“Yes, your surgery lasted 14 hours; then, we sedated you in the ICU for two days, and you were awake in the ICU for one day.” I goggled at her in disbelief, absentmindedly sipping a bit of my drink. “It felt like just a few minutes.”
“Good, that’s what we want. During the operation, we administer a medication that erases your memory to prevent post-traumatic stress.” I was still processing this as the nurse continued, “Now, we want to get your system up and running, so we are going to push you a bit, but the more effort you put in, the faster you will recover.” I nodded hesitantly. “That’s the spirit!” I smiled.
“Penny looks like the Borg Queen; what are all those tubes and wires about?”
“I’m glad you asked, Jane. She has a urinary catheter, and that will come out in a few days. That’s that bag there.” Beth said, pointing. “Next, there are 4 tubes going into Penny’s tummy. These two big ones are draining the interstitial fluids into these bags, here and here.” Jane craned her neck to see, then nodded. “The other two thinner tubes are epidurals, delivering analgesics to help control pain. Speaking of pain, I have a present for you, Penny.” Beth handed me a button and said, “This is your morphine button. When the pain becomes rough, press this and it will deliver some morphine. There is a limit and a timer so you can’t overdose or anything.”
“Can I press it now?”
“Yes, if you feel you need it.”
I pressed the button and, after a beep, a warm rush of relief swept through my body, taking the edge off of the pain. “Jane, you'll also notice Penny's stylish blue leg coverings. These are intermittent pneumatic compression devices to keep blood flowing so no blood clots will form, and they also help in draining the liquid from Penny’s edema. There is a central venous catheter in Penny’s neck and a PICC line, or peripherally inserted central catheter line, in her left arm. Finally, we have the standard IV in her right arm, a pulse oximeterer on her finger and a cuff continually monitoring her blood pressure. Oh, and we can remove the cannula now; I think additional oxygen is unnecessary.” Beth took off the oxygen thing in my nose and stood back, hands on hips, and said, “Yes, she does indeed look like the Borg Queen.”
“Resistance is futile.” The morphine was making me much more comfortable.
“Thank you, Beth, that was very informative.”
“You are welcome, Jane. If you have any needs, Penny, here is the ‘call’ button on the bed, and also here is a big clunky one with a long wire that you will use as you get to moving around more.” Beth hooked the clunky clicker on the side of the bed and said with a little bow, “Now if you have no more questions, my Queen, I do have other patients.” I gave Beth a mocking, dismissive wave, and we all laughed.
Once Beth had gone, Jane said, “I brought a few things for you.” Jane put my backpack by my pulsating legs and put my phone on my over the bed, rolling table. “Do you want anything from your pack?”
“Yes, in the front top pocket — yes, that one — there is a phone charging cable and some earbuds.” Jane pulled those out and laid them beside my phone. “Also, in the pocket on the left is a headband with headphones, and on the right is my Kobo.”
“That’s it?”
“Yup, that should keep me entertained.”
Jane returned my backpack to the floor by the visitor’s chair and said, “I think I’m going to go find some tea and make a few phone calls. I’ll give everyone an update on your condition and maybe grab something to eat.”
“Sounds good. Thanks Jane. And thank you for being here; it’s really nice of you to make the trek up here.”
“Not a problem.” Jane waved as she left, and I pressed the morphine button to see if I was going to get lucky, then drifted off until awakened some time later by a new nurse. “Hi Penny, I’m Trudy, and I’m the night nurse. Sorry, I woke you; I just needed a blood sample.” I looked down at my arm. “No,” said Trudy, “I’ll take it from the central line in your neck. These can only stay in for a few days, but while it’s here, we can use it to take blood without the need to stick you. For the first few days, we take a lot of blood samples to make sure everything is going well.”
“So you are a vampire.”
“Indeed, I am, and that’s not all... I’m also going to check your urine output, your drainage, blood pressure, temperature, heart rate, oxygen levels, sugar levels, and weight.”
“Goodness, that’s a lot. Did you notice the crooked whiteboard?”
“Actually, I did. Tape attaches them to the glass, and it’s not holding properly, so sometime maintenance is going to stop in and fix them with new tape. You be sure to mention it being crooked; they like it when others criticize their work.” She smiled.
“Admonishment received.”
Trudy smiled, and after charting all my info on the crooked whiteboard, and just as she was about to leave, I asked, “Oh, Trudy, did you see my sister Jane?”
“Yes, she said to tell you she has gone home to your place for the night, but will be back tomorrow. You were asleep, and she didn’t want to wake you just to say goodbye.”
“Oh, sure, thanks.”
Trudy left, and a few minutes later another nurse entered, carrying a tray. She moved my phone and stuff to one side and said, “Hi Penny, I’m Linda, and I brought you another ginger-ale, cold water, and some clear broth.” My stomach gurgled. “Thank you, Linda.” She unwrapped the plastic spoon and took the lid off the lukewarm chicken broth, but for someone who hadn’t eaten for days, it smelled like ambrosia.
“Need anything else?”
“No, thank you, this is ‘sufficiently sufficient’, as me ol’ Mammy used to say.”
Linda looked a little bewildered. “I’m an acquired taste,” I assured her.
“Okay, call if you need anything.”
“Thank you.”
Linda left, and I sipped my broth,
relishing every salty drop.
I couldn't sleep. I slept ‘funny’ and had developed a sore neck.
Since I am usually a side sleeper, always lying on my back was getting a little uncomfortable. I determined the solution would be more pillows, which are always comforting to me, and comfort is exactly what I'm craving now.
Today was the first day of being a ‘regular’ patient by being put on a schedule, the first of which was my morning check-up by the night nurse an hour or so before the shift change at 7 am. My chart would be passed off to the day nurse along with concerns and orders from the doctor. Just after 6 am Trudy appeared, donned some gloves, and said, “Oh, you are awake. Good morning Penny I’m here to steal some blood and check your vitals.”
“Terrific.” I said, pressing the button to raise the head of the bed, as Trudy got some vials ready to draw some blood, still central line in my neck, this as quick and painless.
“Open?”
Trudy put the thermometer in my mouth, waited for the beep and said, “Perfect.” After pressing a few buttons on the bed, she got my weight, then copied down the readouts from the monitor.
“Do you usually write on your glove?” I asked.
“Yes, it’s good to take notes because I see a lot of numbers in a day, and these gloves are ‘handy’.”
“Cleaver.”
Trudy smiled, then turned off my leg messaging wraps and checked my edema. “Looking good. These are draining.”
“How can you tell?”
“I press them and see how long the indentation lasts. The shorter the better, and I can already see improvement from yesterday.” Trudy then re-wrapped my legs, turned the machine back on, and then began looking at my two drainage containers. The containers, one on each side, looked somewhat like small squeeze boxes, with their vaguely accordion shape. Each tube ran from my belly to the top of the round container, which, because of its shape, created a very gentle syphon effect. They were half full of yellowish liquid and long red strands. “That’s a bit gross looking”, I said as Trudy turned one over in her hands. “The yellowish liquid is interstitial fluid that ‘lubricates’ your cells. It’s basically plasma, and the long red strings are blood clots.”
“Are they bad?”
“No, but they clog the tubes, and we occasionally have to rinse them out with saline. Not today, though; these look good.” Trudy emptied both containers of liquid into a big plastic measuring receptacle and noted the amount on her glove. In the sink area, she put some of the liquid into a large vial for testing, then dumped the remaining liquid into the toilet. Next, Trudy emptied the urine from my catheter bag, noted the amount, took a sample, and dumped the rest into the toilet.
“I’m going off shift at seven, but I will be back tonight. You are healing up nicely, and your readings are top of the class.” Trudy went to the crooked whiteboard and copied a few numbers from her glove to the board and asked before leaving, “Do you need anything?”
“Yes, some water and another pillow?”
“Sure, I’ll let Gwen, your day nurse, know. She should be in to see you around 7:30.”
“Thank you, Trudy, see you tonight.”
“You bet.”
After Trudy left, I thought briefly of going back to sleep, as was my habit, but I actually felt fairly awake. I enjoyed being awake more and more, so I took out my phone and started emailing family.
A tall nurse with long black hair stood at my doorway, speaking with someone in a conspiratorial tone and glancing my way. She smiled, then laughed as she entered, waggling a finger at me. “I hear you gave the surgeon a hard time, what, with your waving arms.” My eyes widened as she laughed and said “Good for you! Those surgeons are too full of themselves. Oh dear, your hair IS a disaster... we will have to get someone to do something about that after you are a bit more stable.”
Placing a paper cup full of ice water on my bed-tray, she said, “I’m Gwen, and I’ll be your nurse today.” She then marched over and erased Trudy’s name, with some vigour, and wrote, in a beautiful hand, ‘Gwen’. She then disappeared into the hall for a moment to retrieve a cup of medication from her cart. I gulped them all at once, and after a sip of water, I smiled up at Gwen. “Impressive.” Yes, I am rather proud of my ability to take a whole hand-full of medications all at once. I don’t really even need water... it’s a skill.
“So, I see Trudy did all your blood-work and other vitals. I’m just going to check your urine output, drainage and, oh, I see a note for another pillow. You want two?”
“Yes, please.”
“I’ll also bring you some clear broth and jello. You are off regular food until you pass gas or better yet a bowel movement. Your digestive system has been off for quite a while and have to get that going again before it gets burdened with ‘real’ food. Also, it’s one of the first markers of a successful operation. Tomorrow we will remove your catheter and help you up on your feet to go to the toilet. What kind of jello do you like?”
“Green.”
“Decisive, I like it!” After a few more ministrations, Gwen left, just as the resident surgeon arrived.
“Hi Penny, I’m looking at your blood-work and everything looks good. Have you passed gas?”
“No.”
“Okay, well, we will keep you on clear fluids at the moment.”
He examined my drainage tubes, and nodded.
“How’s the pain?”
“Not terrible.”
“Good. We will take the catheter out tomorrow and probably the epidurals as well.” I nodded, a bit worried because I didn’t like the sound of having some pain meds removed. “I’ll speak to the nurse about taking out the PICC line, and probably we will take out the central line in your neck tomorrow. They can get infected, and they lead directly to your heart, so we don’t like to keep them for too long.”
“Can the nurses take blood from my IV?”
“No, they will have to tap a new vein each time.” I really didn’t like the sound of that.
“My hands are shaking a lot, and I have a cough, is that normal?”
“Let’s see? Hold your hands out.” My hands danced about, and the surgeon said, “We’ll keep an eye on that. It might be residual effects of the anaesthetic, and also the ‘Prograf’, the anti-rejection drug you are on might have to be adjusted.”
I put my flailing hands under the blanket so they wouldn’t be a distraction. “As far as the cough goes, hold a pillow against your tummy when you cough. It’s just residue from the operation and should go away in a few days. This wasn’t new information, but I really like checking several times, with several people, just to make sure nothing gets missed.
“We will want to get you up and standing a little tomorrow.” He looked briefly at my legs and put one of my pillows under them. “These should be elevated more to help with the draining.” Then he left to spread his good humour to other patients.
There was a tentative knock at the open door, and Jane came in with a bag of things she thought I might need.
“How you doing?”
“Ya, better. I still have this annoying cough, but apparently that’s par for the course and it should clear up in a week or so. I still feel weak, but the nurses and surgeon tell me I’m doing well.”
“Yes, I was told you are right on track.”
Jane gave my arm a squeeze, then sat in the visitor’s chair. She had acquired a tea on her way up from the car and sat sipping while she peppered me with questions. During my report, a young man appeared at the door with two pillows. “Hi, sorry to interrupt. I’m Ted, a nursing intern. Gwen said You wanted some pillows.”
“Yes, thank you very much, Ted.”
“Do you need anything else? I could open the blinds a bit and let in some sun?”
“That would be awesome, thanks.”
Jane had to move out of the way so Ted could work the mechanism. It seemed rather unnecessarily complicated, but eventually, the sun streamed in, and I saw it was a lovely late summer day. We thanked Ted, who collected the bits of paper on my tray and empty cups and threw them in the garbage on the way out.
I'm uncomfortable. I began squirming and fluffing my pillows. “You need help with those?”
“Actually, yes, it’s really hard to sit up, if you could jam one of these under my head and I’ll cling the other one to my tummy... yes, that’s perfect... thank you.” That was indeed much better. I, as the Borg Queen, could now survey my realm without neck strain.
Jane and I resumed our conversation until lunch, when I received my broth, a ginger-ale, and green jello. “What a feast!” Jane remarked with a smirk.
“Yes, a meal fit for the Borg Queen.”
“Well, since you are tucking into your meal, I think I’ll head home. I’m working on fixing up your place a bit, so I may not come up tomorrow if that’s okay?”
“Sure, yes, I’m very boring, I know, and I think Torquemada may visit me tomorrow and then the fun really begins.”
“Yikes, I don’t like the sound of that!”
“I was reading in my transplant handbook that the sooner you get up and are able to sit and walk, the better your recovery. Though today, the thought of walking is kind of frightening. What am I going to do with all my tubes?” I pressed my morphine button for emphasis.
“I have no doubt you will do your best. If you need me to bring something from home, text me and I’ll bring it the day after tomorrow.”
“Okay, thanks, Jane. Oh, just before you go, can you unwrap my spoon and open my pop? My hands are super shaky.” I held up my hands for emphasis, and they wiggled frantically.
“Yup! Your hands? Will the shaking stop?”
“I hope so.” Being a flute player, the only music I could play right now would be very avant-garde music from the twenty-third century. “I asked the doctor about it, and he said it’s partially caused by the anaesthetic and partially my anti-rejection meds. They are going to keep an eye on it, but in the meantime I could thread a sewing machine while it’s running.”
“Hmm... maybe don’t do that.”
“Okay.”
“Well, I’m off. Are you sure you don’t mind my missing tomorrow?”
“Absolutely not, especially if it means renovations are being done at my house.”
“Okay, well, bye.” Jane bent and gave me a semi-hug and left.
I took a sip of my pop and then tried to use my spoon to propeller some broth into my mouth. It was messy, but the real challenge was the wobbling jello.
Some bounced off my bed onto the floor.
BANG!
I woke with a start, and my eyes flew wildly around the room. Too much talk of a Borg Queen had resulted in a nightmare of being trapped on a Borg Cube. Suddenly waking up in a room filled with blinking lights and monitors was frightening, to say the least. My IV was beeping rhythmically, but that wasn’t the cause of the startling sound. Trudy rushed into my room. “Are you okay, Penny? There was this crash, and I thought you had somehow fallen?”
“I’m okay, but that sound woke me up. I don’t know what that bang was.” Trudy turned off the IV alarm and hung another bag of something, as I scanned the room looking for a bat. No bats, but the whiteboard had fallen down. I guess the tape had finally given up.
“The Whiteboard, Trudy. It fell down. That must have been the ‘bang’.”
“Oh, you’re right.” Trudy marched over and leaned the wayward board behind the visitor's chair. She wrote a few notes on the glass door with the dry erase marker and said, “This will have to do until maintenance can figure out something that won’t scare the bejesus out of us.”
It was just after midnight, and though the whiteboard failure was startling, I was glad I was out of that horrible dream. I pressed the morphine button, and the resulting ‘beep’ gave me away.
“How’s the pain?”
“Maybe a seven out of ten?”
“I can give you a couple of Tylenol if you think that might help.”
“Sure, ya, I’m not too proud.”
“Do you want some juice or ginger-ale?”
“Yes, some apple juice and maybe some water?”
“Of course, I will fetch those and be back in a moment.”
After my drink, Tylenol, and morphine, my heart-rate had returned to normal, and I felt much better. The rest of the night was less eventful, though I was glad when the morning came because I always feel much better during daylight hours. I am definitely a morning person. I have disliked nighttime my whole life, and during my illness, I liked it even less, so I pressed the morphine button.
“Good morning sunshine,”
I was already awake when Trudy stopped in to take my morning vitals and check my fluid output. Yuck, I was soaked. Did I pee or something?
“Hi Trudy. I’m all wet.”
“No worries, let me take a look. Oh, one of your drainage tubes fell out of the collection container. That happens sometimes. I will take your vitals and draw some blood, then we’ll clean this all up.”
“Sorry.”
“No, it’s not your fault. It must have popped out in the night, but we needed to change your bedding and gown, anyway.”
When Trudy swapped out my gown, I had my first look at my tummy. It’s a strange sensation to look at tubes going into your body. The drainage tubes looked like aquarium tubes, and the other two looked like flexible knitting needles. Miraculously, Trudy managed to strip the bed and make it with me lying there, usually rolling the wrong way and ending up more in the way. It felt really nice to be dry and clean, so I wasn’t prepared for what came next.
Trudy betrayed me by saying, “Okay let’s get you sitting on the edge of the bed.” What? Are you Mad Woman? My expression betrayed my thoughts as she said, “No, really, it’s good to get you up as soon as possible. My shift is nearing its end, and I want to be the first to see you sitting up.”
Trudy had proved herself so far, so I figured I would trust her further. “Okay”
“Now, put your left hand there,” pointing at the edge. “Okay, I am going to lift your legs over the left side, then I will help pull you up by your right hand. Got it?”
“Yes.” I should have suspected some ploy when Trudy took off my squishy leg things, but never put them back on.
“Okay, here we go.” After a false start of my putting my left hand in the wrong place, we tried again and with some effort, I managed to sit up. I sat there for a bit, then the trickster Trudy said, “Do you want to try to stand for a moment? ”
“Define a moment.”
Trudy took that as a yes, and rolled a walker that was conveniently hiding in the hall, set to just my height, in front of me.
Trudy locked the wheels, and as I griped hard, she had one hand on my back and one on my right arm, she said, “Okay, push!”
My wobbly legs complained for a moment, then pushing hard, I made it. I was still hunched over, but at least I had made it to my feet.
“Excellent work, Penny.”
I stood proudly for a minute, then it was time to sit.
“Now, try to ease down, not just plop onto the bed.”
Going down was definitely easier, and I sat for a moment catching my breath, then Trudy lifted my legs, one by one, back onto the bed and put the blue compression sleeves on and turned on the message machine. I lay sweating profusely in my once dry clothes, but I was very proud of my progress.
“I think you deserve a ginger-ale and some pills for all your effort.”
I nodded as Trudy popped the top of my ginger-ale, and put in a straw, accompanied by the usual small cup of pills. After taking my morning meds, I needed some rest and was glad Gwen didn’t arrive for another while.
In fact, my next visitor was the effervescent surgical resident, who tapped me on my arm, and I jumped, surprising him. “Sorry!”
“No, no, sorry, I’m incredibly jumpy, and I had headphones on, so I was lost in listening to music.”
“Oh. Your blood tests are looking good, and your fluid outputs are fine. Have you passed gas?”
I bet he wins all the girl’s hearts with such talk.
“No.”
“No matter. I hear you stood today.”
“Yes.”
“That’s good progress. I think we will take the epidurals out today and the PICC line and the central line.”
Gwen was in the hall, so the doctor went out to the hall to tell her his orders.
“Good morning, Penny. I hear you went for a walk today.”
“Well, not really, I just stood up.”
“That’s good. The doctor wants me to take those epidurals out today, but I’m going to need help, so I’ll do it after lunch. Speaking of lunch, have you passed gas today?”
“Smooth segue, Gwen,” she snorted. “I’ll take that as a no.”
“No, but I wish I would. I’m tiring of broth and jello.”
“I’m sure you are. That’s another reason we want you up on your feet or at least sitting ASAP. It will get your entire system moving again, and then you can eat regular food. Your pain meds cause constipation, but we are giving you Lasix to help reduce your edema and a laxative to get that digestive system of yours working.”
“Won’t the Lasix make me pee a lot?”
“Sure, yup.”
“Well, if you take the catheter out, I’ll have to get up and go to the toilet a lot.”
“Your point?”
“Oh, I see your evil plot that will get me up and moving a lot.”
“Saw right through us, you did.”
I laughed.
“What’s up with that whiteboard on the floor?”
“It fell down and woke everyone on the ward up last night.”
“Well, I’m calling maintenance.”
Happy to have sent Gwen on another quest, I now could enjoy my broth and jello in peace. Speaking of which, where are my broth and jello.
I spoke with Jane briefly, Bec, longly, chased my Jello around the bed and slept for some time.
In the early afternoon sometime, Gwen and another nurse I didn’t know stood on either side of my bed, and there were scissors, gauze and a few other simple implements lying on a tray on my blue legs.
“Hi Penny, this is Nicole, and she is going to help me take out those epidurals.”
“Sounds fun.”
“I’m sure it will be.”
“Okay, Nicole, you do the one on the left, and I’ll do the right. Clean the area with disinfectant.”
“Does she need numbing?”
“No. You don’t, do you, Penny?”
“No, I don’t have any feeling on my tummy.”
“That will come back with time, but right we can use that to our advantage.”
I watched in fascination as Gwen and Nicole each wrapped disinfecting wipes around each tube, where they entered my body, then pulled with the other hand. Like unsheathing a sword. The long tubes just kept coming, almost like a magician pulling handkerchiefs from their sleeve. With the tubes over a foot long finally removed, Gwen and Nicole applied pressure and then covered the holes with taped gauze.
“Do I need stitches?”
“Nah, these holes will close up in no time.”
Nicole gathered the long tubes up into a bag and deposited into the hazardous materials bin, and then Gwen said, “That wasn’t so bad, eh?”
“Not at all; it was quite fascinating.”
“Indeed.”
“Now let's take out that PICC line.”
This procedure was not nearly as interesting, but actually more painful than removing the epidurals. It wasn’t excruciating in a cutting sort of way, but left a dull, lingering throbbing that reminded me of the feeling in my wrist after my angiogram. It was most unpleasant.
“Are you taking out the central line in my neck?”
“No, we need to draw a lot of blood for a few days, and we don’t want to poke you when we can take samples from the central line. It can safely stay in for a few more days.”
“Well, that sounds good to me.”
“Have you passed any gas?”
“No, not yet.” I was seriously thinking of lying and saying I had, just so I could get some real food, but then I would just be hurting myself.
“When I do, you will be the first to know.”
“Okay, good. Do you need anything?”
“No, I’m good, thanks.”
Gwen nodded as she picked up the tray off my legs, and she and Nicole left.
A strange man came in, mumbling to himself as he picked up the whiteboard and nodded. Putting the board down, he left, only to return a moment later with a level and some tape.
“I’m Ben, and I hear you have been complaining about my work,” he said sternly.
“I, uhm.”
He laughed and said, “That tape we used was crappy, but I’ve got super sticky stuff, and this will hold. If it doesn’t, I’ll buy you a beer.” Strange bet to have with someone recovering from a liver transplant.
“Uhm, okay.”
“I also hear you are a stickler for things being straight, so I brought my trusty level.” He held it aloft like Excalibur.
“Okay,”
He smiled and got to work putting up the whiteboard, straight this time, then pulled down on it a few times to prove its resilience.
“Thank you.”
“No worries. Just don’t sick Gwen on me again... that woman is frightening,” he said, indicating the door with his eyes. There in the doorway stood Gwen.
I laughed.
She snorted, and Ben left with a wink.
It wasn’t yet midnight, but already, sleep was elusive.
They had taken my morphine pump and replaced it with oral painkillers, opioids of some kind, but my allowance of them was meagre. I lay for a long time, sweating and itching, until I finally relented and rang the nurse.
“Hi Penny, do you need something?”
The pain and itching were driving the nurse’s name from my head. “Uhm, yes, the pain is... challenging?”
“I hadn’t heard it put that way. Do you need something?”
“Yes.”
“Let me look and see what I can give you.”
She disappeared into the hall to look at her computer. While she reviewed my chart, I looked at the whiteboard and saw her name, “Ellen.”
“Sorry to bother you, Ellen, but the pain is becoming kind of alarming.”
“Well, I can give you Tylenol and some gabapentin to take the edge off.”
“Anything you can do would be great.”
The pain and itching were still consuming my thoughts hours after the meds should have done something. I struggled to reposition myself in bed, managing only slight shifts to either side. Laying there on my back, lights blinking, things beeping, thinking I perhaps would go mad.
It was clear I would not get any more ‘chemical’ relief, so I put on my headband-headphones and played ‘the sound of rain.’ As I listened, I thought about sleepy nights of my childhood listening to rain, feeling safe, and snug. I thought about days being caught in the rain and laughing as my brother and I ran for cover. I thought of sitting watching the rain tap against the window as I read a story to my son. Eventually, I lost myself in comforting memories, and with moist eyes, I drifted off to sleep.
“Penny?”
I woke with a start, my headband-headphone twisted so one speaker was playing the sound of rain into my right eyeball and the left playing to the top of my head.
“Huh yup?”
“Sorry to startle you; it’s time to take your morning vitals. Open?”
A thermometer was shoved in my mouth as I lay there in my wet bed, all akimbo, pillows and blanket intermingled with tubes.
“Looks good. How are you feeling?”
I just looked at Ellen, with my headband-headphones having slipped over one eye.
She nodded and said, “I see you are wet... Oh, your right drainage tube fell out.” “How’s the pain?”
“Bad.”
“Well, after I finish with your vitals, I will get you some pain relief.”
As promised, I got the painkillers a few minutes later, and the morning sunshine streaming in the window and along with the pain relief made my long and difficult night melt away like morning fog,
and then I farted.
Finally, I had passed gas, and my reward would be ‘real’ food.
I had visions of a hamburger, or maybe pizza. Oh, some fish and chips would be excellent! Instead, I got yogurt and an energy drink. I was very disappointed, but the nurse told me I had to work up to a more substantial fare.
After I had stuffed myself with a drink and a yogurt, it was time for the daily festivities to begin. First on the agenda was a visit by two surgical residents, who discussed my progress sans my input.
“I think we should have the nurses take out the central line today.”
“Yes, I put it on the chart yesterday, but it didn’t get done. I will speak to them again. How about the catheter?”
“I see she can sit up and stand, so yes, that should come out today.”
“Okay, I’ll speak to the nurse about that as well.”
“Other than that, her enzyme levels are good and...” he bent over and looked at my tummy. “Yes, the incision is healing well. The right drainage tube needs to be cleaned.” The other doctor concurred, and that was added to my chart.
After congratulating each other, they left.
Next, Tanya, today’s day nurse, took my vitals again, and when she looked at my right drainage container, she shook her head, saying, “This is clogged and the tube has fallen out again. I’m going to find another container,” and after jerry-rigging the tube to the container with some surgical tape, she left in search of a replacement.
I took this opportunity to email a few people, including Jane.
Email:
Hi Jane, can you bring some adult diapers when you come? There is a box of them on the top shelf in my bedroom closet. They are taking my catheter out today, and my bed is already wet because of the drainage; I don’t want to add urine to the mix.
Thanks, penny
When Tanya returned, she had a new drainage container on a tray with a huge needle and some bottles of something.
“I have to drain the tube and rinse it out with saline because it’s full of blood clots. After I do that, I’ll replace the container, and you should be good to go. I’ll drain the left tube as well, though that container is fine.”
Relieved to find out that the huge needle was not meant for an injection, I sat up to watch. The procedure was pretty simple. Tanya would inject some saline into the tube, then let it run back out, bringing long blood clots and other detritus out with the liquid. Once the tube was sufficiently clean, the tube was re-inserted onto the container nipple. That's how I would attach the pump back when I had an aquarium. I hoped this process was more successful than I had been with my fish. Most times, I gave them too much food, which led to their premature demise and then floating to the surface.
The left drainage tube was much less clogged, and I supposed that was because the liver is on the right side, but I forgot to ask.
After that, it was time to take out the catheter. Tanya did that in just a moment, and I hardly noticed. My blue leg ‘squeezers’ were removed, and Tanya helped me sit up. It was still an ordeal to do so, but much easier than yesterday. While I sat, Tanya stripped the bed and brought a walker in for me to stand, taking that opportunity to put fresh sheets on the bed. My phone dinged, indicating a new email had arrived. I sat again and put on a fresh gown, was helped into bed and the blue leg ‘squeezers’ were again activated.
“Now, when you have to use the washroom, use the buzzer and someone will help you over to the toilet. Don’t try to walk on your own because a fall right now could be extremely dangerous. You are on Lasix to help drain your edema, so you will have to use the toilet a lot, but again, call someone every time.”
I nodded, and Tanya gathered the remnants of my tube cleaning and threw them in the various receptacles. “Thank you,” she nodded left.
Picking up my phone, I saw the email was from Jane.
Email:
Hi Penny,
I hope your night was good. I'm in the midst of putting in a bidet and want to finish. Is it Okay if I don’t come up to the hospital today? I really want to get this done.
Jane
Email:
Hi Jane, sure, no worries. It’s pretty boring up here, I know. They took out my catheter today, and I’m starting to stand a bit. Who knows, the next time you see me, I may be dancing a jig.
Good luck with the plumbing and thanks.
penny
After a delicious lunch of a creamy soup, ginger-ale, pudding, and an energy drink, I was ready to try out my legs, so I buzzed a nurse.
Tanya appeared moments later. “Bathroom?”
“Yes.”
“Okay then...” Tanya busied herself with my blue leg ‘squeezers’ “Let's get these off your legs, and I’ll help you swing your legs over the edge. Tanya got the walker, which had now become a permanent addition to my room, locked the wheels and helped me stand. It took a moment for Tanya to move tubes around, and with a drainage container pinned to each hip and the IV pole in tow, we slowly shuffled to the toilet. I think I look like a gunslinger from some dystopian future, using my various tubes as weapons to destroy any mutant in my path.
There was a plastic cup in a holder in the toilet. “What’s with the cup?”
“We still have to monitor your urine output, so after you go to the bathroom, don’t flush. A nurse will record your output, then pour the contents into the toilet and flush.”
Tanya helped me position myself on the toilet, then closed the curtain, giving me at least a brief illusion of privacy, and I relieved myself. The burning ammonia element of my pee was gone, and I almost wept with relief. It was a small thing, but it made me feel like my body was trying to be normal again.
After I finished, I washed my hands in the little sink, then Tanya led me, my rolling IV pole, and some errant tubes in a little parade back to my bed. I arranged my pillows; she arranged my tubes and blood-pressure cuff. Tanya recorded my urine output on a chart and flushed the toilet. She discarded her gloves in the door receptacle, then with a few squirts of hand sanitizer, disappeared.
That was quite an ordeal for something so simple, but I think I accomplished a lot today.
My guts were really waking up... I gurgled and percolated all day. Still only gas, but I definitely felt my system getting ready to do something... dramatic. At mealtimes, other patients were getting nice smelling things, I was still looking at my meagre assortment of jello, broth, yogurt, and drinks.
I could so go for a peppercorn steak, with that crunchy crust and juicy pink interior. Perhaps some fries with gravy? Crusty rolls, warm from the oven, with melting butter. Stuffed crust pizza with pepperoni, onions, and mushrooms. Crispy battered cod and crunchy coleslaw and for dessert? Chocolate or cherry cheesecake, or maybe a chocolate sundae with warm brownies and lots of whipped cream.
I looked at my green jello, and my stomach gurgled in protest.
“Time for an ultrasound,” said the nurse, closely followed by a cheerful ultrasound technician walking his pet machine.
“Is there a problem?”
“No, not at all; we just need a quick look to make sure the surgeon didn’t forget a wrench or something.”
I must have looked startled. “Medical humour!”
“Oh... sure.”
The technician rolled the machine over and said, “This will only take a moment, and I will be gentle.”
“Okay”
He arranged my blankets for privacy, then lifted my gown up a bit to expose my tummy. He was very sparing with the gel and avoided running over my stitches. After a few minutes of scanning this way and that, he wiped off the gel and said I looked okay. He then left. The nurse gave me a better cleaning, changed my gown, and left as well. Something seemed fishy, but in my current state I couldn’t investigate further.
Later in the day, a surgeon stopped by to see if his orders had been followed. I felt like I had been inadvertently drawn into a conspiracy when he noticed the central line in my neck was still in place. He told me again why that needed to come out, and I nodded along with his reasoning, but also knew why the nurses were stalling. To be honest, I favoured the nurses’ stance because I had never feared needles, but in the past few years of constant poking made me change my mind. The thought of having blood drawn several times a day was making me nervous. To add insult to injury, the meds I was taking wreaked havoc with my insulin production, so my levels were checked many times a day. My fingertips were becoming quite sore, and I didn’t want my hands and arms to suffer the same fate.
Eventually, the doctor tired of explaining the need for the central line to be removed and moved on to the drainage tube. That seemed to please him, and he went away satisfied.
Tanya arrived with a lovely bouquet of flowers. She was very impressed and spent some time arranging them by the window. Handing me the card, she beamed as I read.
Dear Pen,
I can’t tell you how happy and relieved I am that you finally got a new liver. Vick helped me pick out these flowers, and I hope they brighten your room and raise your spirits.
With all the love in the world,
Dad
I smiled at Tanya, and I think not only did it brighten my day, but I think she enjoyed bringing me something happy. The flowers made my room smell amazing, and with a smile on my face, I looked down at my tray of broth and yogurt.
“The flowers are lovely, but this meal is the very definition of the opposite of lovely.”
“Sorry, Pen”, she said, winking, having just heard my pet name. “Here’s a question for you... Pen.” This is going to get old fast. “Shoot.”
“All the other patients have their TVs on, some all the time, day or night, yet you haven’t once turned yours on. Why?”
“Oh, that’s easy. I don’t like TV.”
“Why not?”
“I’m afraid the answer is boring.”
Tanya laughed and said, “No, really why?”
“No, that is the answer... it’s Boring, with a capital B. Also, I know a lot of people find a TV on in the background soothing, but I feel like its sort of poking me and bothering me or trying to convince me to believe this or that, or buy something. To me, it’s like walking through an open market with people waving things and shouting. It simply bothers me.”
“How do you keep up with the news?”
“I find the news generally upsetting, but I do watch YouTube and read Blue Sky. When I do, though, I watch or read with intent; it’s not just background. I don’t ‘second screen’ movies or TV. That being said, I do read a ton of books and listen to music, so I’m not ‘unaware’ of world events, just not that interested in the gossip of the day.”
“Oh, and also I can’t find the clicker.”
Tanya laughed and said, “We have more at the desk; do you want one?”
“No, really, I’m good.”
Once, I had prided myself on my sense of day and time.
I had scoffed at people who needed alarms for simple tasks, like boiling eggs or going to an appointment. Excuses like “My alarm didn’t go off” were anathema to me, and those that couldn’t tell what day of the week it was without referencing a calendar were, in my view, suffering from a neurological impairment.
Then I had a 14 hour operation and was put in a coma for 2 days and, like shaking an ‘Etch A Sketch’, my day and time ability had been erased. Even if I looked at the date on my phone, it was like reading Sanskrit and just didn’t register. I was pondering this when my bowels suddenly woke up. Desperately, I pressed the button to call the nurse. Hurry, hurry, hurry!
“Hi Penny.”
“I have to go to the bathroom, DESPERATELY!”
“For a bowel movement?”
“YES!”
Brenda, today’s day nurse, put on some gloves and then went to the toilet to remove the cup insert, discarded her gloves, donned new ones and moved my walker beside the bed. In my desperation, this seemed to all happen in slow motion.
After unwrapping my leg “Squeezers” and helping me sit up, I braced myself against the walker and hoisted myself to a standing position. My two drainage containers were quite full and, pinned as they were, felt like weights just to make walking that much slower. Brenda arranged my tubes and IV pole, and finally we were off to the toilet. I wanted to sprint, but my legs had other ideas, so after a slow walk to the toilet, I was lowered; the curtain was drawn and I let go.
Dear God, what have I wrought!
“You okay?”
“Yup,” I said in a tiny voice as the carnage continued.
Eventually, I finished and said, “Uhm... should I flush?”
“No, I have to check the colour and consistency.” So, the embarrassment continues.
“I don’t envy you.”
“At least you made it to the toilet. Many don’t.” I wanted to weep for poor Brenda, but I was too weak for that, in fact... “Uhm... I can’t really wipe myself... uhm.”
“Yes, that’s normal. I’ll do it.”
“You really do get all the glamorous jobs, don’t you, Brenda?”
She laughed and drew back the curtain. I held on to the walker while Brenda checked my donation to the sewer system and wiped me down like a newborn. After a vigorous hand wash for both Brenda and me, we journeyed back to the bed. I felt much lighter, and after Brenda emptied my two drainage containers, I practically floated.
“Thank you very much Brenda, I can’t tell you how much better I feel.”
“I’m glad. I’ll note that on your chart, and you know what that means?”
“Real Food!”
“Real food, yes.” She left, and I lay there, letting my flowers battle the toilet for smell supremacy.
“Penny?.. Hi Penny, I’m Kristen. I’m one of the physiotherapists.” I was really just dozing and had hoped she wouldn’t notice me.
“Hi,” I said, my ruse discovered.
“Hi. I read in your chart that you are progressing well, so today we are going to start having you walk a bit and sit in the chair.” She indicated the visitor’s chair and, with no comment from me, she rolled the walker beside my bed. Kristen removed my ‘blue leg squeezers’ and said, “Can you lift your legs onto the floor without help?” I held a pillow against my tummy and rolled so that my legs more ‘fell’ onto the floor.
“Good. Sit up?”
Again, I did that on my own.
With the walker locked, I stood, making sure the tubes were not a problem, when another person appeared at the door. This is Jen, a physio trainee, and I’ve asked her to help.
“Hello”, I said, still holding onto my walker for dear life.
“Okay Jen, you bring the IV pole with us, and I’ll hold the lines and go beside Penny to make sure she doesn’t fall. Oh, first, Jen, take the blood pressure cuff off, and Penny, you can leave the pulse oximeter on your table. Great! I think we are ready to go. Ready Penny?” I doubt very much whether my readiness has anything to do with it. “Sure.”
“Here is a mask for you, Penny. Whenever you are out of your room, you need a mask.”
“Oh, sure, yes of course.”
Kristen had to shorten the bed a little to let us past and out the door. The ward was set up like a figure eight with the nurses' station in the centre, at the top, patient rooms all on the left, physiotherapy in the centre, at the bottom and access hallways and a faux staircase to nowhere on the right. “Today, we are going to go in the lower circle, but if you get dizzy, Penny, let me know and we can cut through the physio area and get you back quickly.”
Challenge accepted. There was no way on this planet I was only going halfway. So, I, with my IV pole and little entourage, walked around the circle. “Try standing up straighter.” “Good, how do you feel.” “Are you good for the entire circle?” “Stand up straighter.” Indeed, I will have to work on my posture because I felt protective of my wounded tummy. “Good, that’s better.”
We wound up where we started, though I felt progress had been made, and now I had to pee.
“I have to pee.”
“Sure, now’s a good time.”
Jen was dismissed, and Kristen helped me to the toilet. After relieving myself and washing my hands, I turned, expecting to return to bed, but Kristen had a surprise. “Now, we will have you sit in the chair for a bit.” I looked quizzically.
“It really helps with your recovery to spend less and less time in bed, and our goal today is one walk and two times sitting in the chair. It’s almost lunch, and perhaps you would enjoy sitting up to eat?”
“Sure, okay.” So Jen put a pillow behind my back as I sat waiting for lunch.
“Are you okay for now?”
“Yes.” Though sitting was kind of uncomfortable because I felt a pressure on my stitches and worried that at any moment I would split wide open and spill my guts all over the floor.
There was a place on the whiteboard for walking and sitting, so Jen marked my progress for today and left.
Luckily, my phone was on my rolling table, which was close at hand. Jen had also left me with the giant call button, which was as big as a shoe.
Email:
Hi Everybody,
I took my first walk today and am at this very moment sitting up in a chair. I’m hoping my guts don’t fall out. I can now eat normal food. All is proceeding according to plan... can’t talk now, the guards are coming, will update later.
Love,
penny
My lunch arrived. A veritable cornucopia of delights... vegetable lasagna, with creamy white sauce, a bun with butter, broccoli, carrot, cauliflower medley, apple slices, a chocolate chip cookie, chocolate milk, apple juice, a vanilla energy drink, and some tea with milk.
My appetite was still small, so I ate a bit of the lasagna, some veggies, a bite of the bun, the whole cookie, and chocolate milk. Unlike Jane, I’ve never been much of a tea drinker. I didn’t touch the apple juice because I was just tired of it, but the energy drink was vanilla. I DESPISE VANILLA. Everyone always says, “How can you hate vanilla? Everyone likes vanilla?” “It is the very definition of inoffensive.” When they came and took the tray, I said how much I hated vanilla. I think I got a little carried away, and the woman taking the tray laughed and said, “Message received loud and clear... you hate vanilla!”
“Other than that though, it was fantastic to eat again. Thank you.”
“It’s a little gloomy in here; do you want me to open your blinds?”
“Oh, yes, that would be great. Thanks.”
As sunlight poured into the room, she said, “I’m Irene, and I float around the ward helping out. I don’t have a really structured role, but if you need something, I’m the one to ask.”
“Good to know.”
“For instance, would you like me to attack that hair of yours?”
“Oh yes, the surgeon, he did me wrong with this hairdo.”
“He did indeed. Are you ready to go back to bed, because it would be easier to fix your hair there?”
“Yes, my tummy is starting to hurt, so yes. First, I have to go to the washroom.”
“Yup, okay, I can help you with that.”
After relieving myself and washing my hands, back in bed, Irene said, “Would you like a bed bath to go with me fixing your hair?”
I almost cried at the offer. “Oh my God, yes.”
She smiled and said, let me just go get some stuff from supply, and I will be right back. What a treasure! This is exactly what I need.
When she returned, Irene had a basin, cloths, some towels, and soap. With the basin full of warm water, Irene wiped me down, avoiding my stitches, which were, curiously, covered with little butterfly like papers. “Those are part of the suturing process and will just dry up and fall off over time. Don’t pick them; they will fall off of their own accord.” It was very relaxing to have someone talk quietly while being washed with warm water.
“Okay, now the arduous task — your hair.”
She picked up a pair of scissors, and fear bloomed in my eyes. I had lost so much due to liver failure that the thought of losing my hair was the last straw.
“I don’t want my hair cut. A lot fell out already, and it’s thin and patchy, but I'm still not ready to be bald.”
Irene laughed and said, “I need scissors to cut the surgical tourniquet thing the surgeon used on your hair. He is a brilliant surgeon, but a lousy hairdresser.”
“Oh,” I said, casting my eyes down with embarrassment.
“I think we all know how important your hair is to you because even heavily sedated, you managed to defend your locks from the knife.”
I smiled. “Thank you for understanding.”
Irene nodded curtly and then cut the blue rubber obscenity from my hair.
“Oh Dear! I’m not even sure how to attack this? Hmm, let me see.”
My hair had matted into a solid ball, and the best approach would clearly be a sheering of my head, but with lots of hair creams and time, Irene finally got it loose enough for a thorough brushing. She couldn’t do a proper wash, but did her best with her little basin. She held up a mirror, and I beheld my countenance for the first time since the operation. “Oh my, I look... rough.” I turned this way and that, looking at my patchy hair and tube taped to my neck. “You did an excellent job with my hair, uhm... but what’s with all the balled spots?”
“I’ll answer that,” said Dr. T., from the doorway. “Your body fought a war and needed every resource to keep you alive. As your liver failed, more and more poisons built up, and you couldn’t process food, so your body had to take energy from anywhere it could. Hair is not a life and death need, so your body stopped sending precious energy to grow hair. Then the operation was another battle for your body, and again it couldn’t waste energy growing hair.”
“Will it grow back?”
“Yes, over time your body will return to normal and your hair will grow again. Sometimes it grows back differently.”
“Different?”
“Thinner, straighter, a different colour, but the patchiness should go away.”
“Sorry, I pushed your hands away in the operation.”
He laughed and said, “That’s not unheard of, especially with women and their hair.”
“Well, thank you for saving my life. It means a lot to me.”
He laughed again, and said, “That’s what I do.”
“Are you done with her?” he asked, turning to Irene.
“Yes, for now.” Irene left, and the surgeon checked my vitals.
“You are doing very well, Penny, but...”
“But? I don’t like that.”
“Your ultrasound from the other day showed one of your bile ducts needs a stent.”
“Oh.”
“We go in endoscopically so we don’t need to make an incision, but you need to be lightly sedated and then a stent is inserted into the duct of concern. If the bile were to leak out into your abdominal cavity, it would be bad, so this is more of a precaution. The stent is a small plastic tube that goes inside the bile duct connection, giving it strength and stability.”
“Questions?”
“Nope,” I said, writing furiously in my journal.
“You will be given a sheet with the procedure.” He said, nodding at my journal.
“Hmm...” I said, still writing. If I write things down, I process them better than just reading. It’s the same with my theory on why reading is better than watching a movie. By reading, I take in the information at a slower speed, so it’s processed better than a movie or even an audiobook. Writing is one level better than that, and especially in this day of quick, flashy videos and sensational headlines, I need to slow everything down through reading and writing.
The surgeon continued skeptically, “The stent will have to be cleaned out of ‘crud’ in six months or so. It will be the same endoscopy procedure, and if the duct looks stronger, we may take the stent out at that time.”
“Okay.” I said quickly, reviewing my notes.
“So, when would I have this procedure done?”
“I have an OR booked for tomorrow at 8 am, so dinner for you will be clear fluids, then you will be NPO.”
“Bummer.”
“Here are some forms to fill out for the surgery.” He produced the usual consent forms, mostly filled in, and I just had to initial and sign here and there.
“Promise me one thing,” I said in a serious tone.
He nodded.
“Please don’t do my hair again; you are a bad hairdresser.”
He laughed and said, “No promises Penny, you do like to wave your arms about! But I’ll do my best.”
“That’s all I ask.”
Dr. T. left, however unbeknownst to me, he left a strict order for the central line in my neck to be removed. He feared infection, and it had been left in longer than he liked, so before the operation tomorrow, he wanted the nurses to remove it and remove it now.
After one more blood draw, Brenda removed the central line,
and my arms would soon pay the price.
The morning brought the first blood draw of the day,
along with a prick of my finger to check my insulin levels. With no breakfast, my drainage containers were emptied, the IV was disconnected, and then my sore arms and I were wheeled down to the OR.
We whizzed down the corridors, a breeze blowing in my hair. No, really. Take your time! A quick trip in the elevator and there I was being presented to the surgical staff.
“Are you Penny?”
“Yes.” The surgical Resident, nodded, looking at my chart, then said, “Good, I am going to spray a numbing agent in your mouth. Open?” The spray tasted like?.. Bananas? Swallowing and talking immediately became more difficult, just like after a visit to the dentist.
“Okay, we will help you up and arrange you on the table.”
The OR was covered in plastic. Was a murder was about to take place? There was a big ultrasound machine looming over the operating table, along with several monitors. With help, I organized myself and my drainage tubes and containers onto the table. I was instructed to lie on my tummy, with my left arm down and my right arm up. I felt like I was performing “Walk Like an Egyptian” by ‘The Bangles’. “Tilt your head this way... yup... a bit more...”
“Good, okay, Penny, open? We are going to put a plastic mouth-guard in to protect your teeth.” I wasn’t sure of much after that, though I remember feeling like I was choking at one point and thought I was awake for the operation. However, I think I just needed a stronger dose of ‘forgetting’ meds.
“Penny”, I woke up some time later back in my bed in the transplant ward. A nurse was hovering around me, and Jane was sitting in the visitor's chair. My throat was sore and my mouth was still feeling numb, so a weak wave was all I could manage, though that seemed sufficient. I phased out of existence for a moment, and the nurse had reappeared, bringing a ginger-ale and ice water. Coming out of anaesthesia, I sipped my water a little. “Hi Jane,” I croaked.
“Hi Hon, I was told you were going in for a minor operation and thought you would like a friendly face when you woke up.”
“Yes, thanks.”
“I heard the operation went well, and I’ve only had time for two cups of tea before you woke up.”
“Gosh, mere moments then.”
Jane nodded and threw a brief look at the flowers. “The flowers from Dad are nice.”
“Yes.” Everyone knew my very favourite thing is fresh-cut flowers. I am afraid of dogs, allergic to cats, kill all plants, but I am good with cut flowers, because they are already dead. Perhaps I should have been a mortician.
“So what’s on the agenda for today?”
“Well,” said Jane, “I brought the stuff you asked for and a few other items, but I really want to get back to your house in a bit... I’m painting the bathroom.”
“Sure, yes, of course. I appreciate you making the trip here, but really, I’m just doing what they tell me and eating disappointing food.”
“Your hair looks better than the last time I saw you.”
“Oh, thanks; it’s a relief to have it loose again. See, they also took out my central line,” I said, turning my head so Jane could have a better look. “They tell me I’m doing well.”
“Great, can I get you anything?”
“Why yes, now that you ask. I have to pee, and you could take off the blue things on my legs and bring my walker over and help me to the toilet.”
“I can do that.”
“Apparently, if you hold the bottom button down, it will turn off my leg squeezers, then you can peel them open. They are held with Velcro.”
Free of my leg squeezers, I rolled so my legs fell off the bed as Jane readied the walker. After a pee and washing my hands, I said, “For my next trick, I want to sit in the chair to show off. You can sit on the bed or the walker, dealer’s choice.” Jane chose a bed.
I sat in the chair, letting the last of my anaesthetic wear off, while Jane and I chatted. After some time, Jane said, “Well, I guess I’ll go.”
“Yes, of course. I think I’ve shown off enough for one day; can you help me back to bed?”
After making sure I was settled, and my leg squeezers were reattached, Jane collected her belongings and with a quick hug, headed home to paint the bathroom.
“Ready for a walk?” asked Kristen.
“Yup.”
“We are going to go with just me. Jen is off today, and I think you don’t need too much help anymore.” Kristen disconnected my IV and blood pressure cuff and took off my leg squeezers. I sat up with some alacrity, the effects of the operation having worn off. Walker ready, I hoisted myself and walked with Kristen following just in case I needed help. I did the whole figure 8 and was sweating profusely as we returned to my room. I sat in my chair while Kristen reattached my IV, but my blood pressure cuff wouldn’t reach and was much less necessary. Kristen left and congratulated me on my progress, while I sat like a queen, waiting for dinner to be served.
After my false start of ‘normal’ food from yesterday, I was looking forward to today’s fare. I was glad to see the ever present cookie, but what was this? Vanilla energy drink? This is intolerable! The main meal was turkey with potatoes and veggies and a bun. I made a valiant attempt at eating most of my food, as my appetite was returning to some degree.
The rest of the evening was quiet and relaxing.
Today, I turned a corner and was feeling better than I had in years.
I awoke to the incessant beeping of my IV.
Laying in semi-darkness listening to the rhythmic beeping, I realized I was desperate to go to the bathroom, and also I was soaked. The call button intimidated me as I am loath to disturb others, but desperation won out and I pressed the button.
“Hi Penny, what do you need?”
“Well, the IV is beeping, and I’m all wet. I think my drainage tube came out and is leaking. Also, I have to go pee. Sorry to bug you. I can probably make it to the toilet myself, but...”
They cut me off. “Be right there!”
I ramble when I’m nervous, but I had a lot more to say...
Trudy appeared at the doorway. “You do go on, don’t you?”
“Sorry.”
She laughed and said, “Not at all, I’m glad you used the call button this time.”
Yesterday I tried to go to the bathroom by myself because I didn’t want to use the call button, and it ended... poorly.
She rolled the walker over and as she took off the blue leg squeezers she said, “The doctor said we are done with these.” Throwing them in the bin.
Trudy helped me over to the toilet, and while I sat there, curtain drawn, she stripped the bed and got fresh linens. When she returned, she helped me to the chair, then made the bed. Before having me change into a dry gown, Trudy checked the drainage, and the right one had indeed fallen out again. “This tube looks ready to come out. The left one should stay in, so I’m going to go get an absorbent pad and some gauze and tape. You just sit tight.”
When Trudy returned, she spread a large absorbent mat on the bed and helped me lie down. Then, Trudy pulled the plastic tube out; as with the epidurals, it looked like a magic trick. I had seen a YouTube video of someone pulling a long tapeworm out of someone, and this procedure gave me that vibe. The hole wept a few drops of liquid, but after Trudy wiped it with some gauze, it seemed pretty dry. She taped a two absorbent pads over the wound, saying, “This will have to be changed once in a while over the next few of days, but that should be more comfortable for you and you can sleep on your right side now without the fear of tangling tubes.”
“Will I need stitches?”
“No, the drainage holes will close up by themselves, though there may be a little scarring.” What’s more scarring? I have my large Mercedes scar, so two little holes will hardly make a difference. I was never one for a bikini, anyway.
Finally, Trudy helped me change into a dry gown, removed the large absorbent pad on my bed, tucked me in and hung a new IV of something.
“Thanks, I feel much ‘dryer’”
“No problem.” With all my used parts, tubes, container, leg squeezers, and absorbent pads, stuffed into a bin, Trudy squirted some disinfectant on her hands and left.
I woke up damp. The absorbent pad covering my wound was soaked, and I had to go to the bathroom. I buzzed the nurse, but it was shift change, so I got help from a caregiver, who didn’t feel comfortable dealing with my wound. However, she did help me to the toilet and closed the curtain. Once relieved, she helped me to my chair where I could wait for the day nurse. While waiting, I created a sizable puddle beside my chair, and my stitches were throbbing a little, so I was happy to see Brenda, today's day nurse. She changed the bedding and had me lay down on another absorbent pad, changed the dressing and gave me a new gown. This is weird.
“This is a weird gown. How does it work?”
“Oh, yeah, sorry, they are short staffed in the laundry, so we have to make do with what we have, and what we have are those ‘surgery’ gowns. They include snaps, which allow unsnapping while prone, reducing the need to move the patient. Unfortunately, these are an old design that didn’t work, and most of the snaps have fallen off.”
“Look, I made a cape!” Holding up my creation.
“This one seems to have three armholes and a head hole... Curious.”
“I don’t know what to do with this one; it’s like a misshapen sail with snaps in all the wrong places.”
Dressed for the circus, Brenda asked, “Okay, Penny, time for the blood draw. Remind me, where was your last?”
“Here on my right forearm. I think I am running out of spots.”
“Well then, your eyes are next!” Nurse humour. “I guess we will do your left hand.”
I hate the hand ones; they hurt a lot more than the others. The blood-draws high up on my arms, opposite my elbows, are my favourite, as they hardly hurt at all. Unfortunately, my arm veins are really hard to find and like to hide from needles.
After tapping me for blood, Brenda pricked my finger for an insulin reading and left me dreaming of those halcyon days when I had a central line in my neck.
I took my pills at 8 am just as my breakfast arrived. Oh cool, I got a menu for tomorrow. I’m all grown up now. Today’s fare was pretty okay, apple juice, Rice Krispies with sugar, a hard-boiled egg with salt, a bagel with cream cheese, horrible instant coffee with milk, and a Good God, begone from my sight ye foul liquid!.. Vanilla Energy drink? Needless to say, I ate most of my breakfast except for that offensive beverage.
I wrote on my menu, “For the love of God, stop with the vanilla drinks!” I then spent considerable time working on the perfect menu choices.
When the cleaner arrived, I apologized for the puddle. “No worries, it happens. I’ve seen worse.” The way he said that reminded me of the sound ‘Sideshow Bob’ made stepping on rakes.
Later I sat in the chair and decided to do a walk, by myself, because my IV had been disconnected for the moment, and I was free to roam. I had been admonished once for going to the washroom without my walker and then having to call the nurse because I couldn’t stand without my assistance.
Mask on, walker at the ready, I ventured forth into the hall. I did the big circle, and twice the small top circle. The staff at the nursing station all acknowledged my determination, and as I made my way back to my room, I passed the other transplant recipients, all in various stages of repair. As I passed the physio area, Kristen popped her head out and said, “Good to see you up, Penny. Do you think you would be ready to start some light exercise later today?”
“Sure, yes.”
“Great, I’ll stop by and pick you up around 4 pm.”
“Okay... gotta run... figuratively.”
Kristen smiled, which was rare, and I hurried to my room to pee. How could a body possibly contain so much liquid? The positive was that I was losing ‘water’ weight at a precipitous rate.
Good to her word, Kristen arrived at 4 pm and after a quick pee and hand wash, I was ready to work out. Kristen explained the importance of resistance exercises, especially after several years of declining physicality due to a failing liver. “Do you have weights at home?”
“No.”
“You could maybe think about getting a set, but in the meantime you can also use cans of food as weights. Today, we will start you with no weights, but perhaps tomorrow, we will add a small amount, especially for arm curls.”
“Okay.”
We started with some arm extensions without weight and moved onto leg holds and bends, again without weight.
“The last exercise involves standing up and sitting down without help.” I’ll put the walker in front of you, but try not to use it unless you think you might fall. We will try 5 sit and stands. Go slowly; resistance exercises are about working your muscles, not increasing your heart-rate.
I did 6 because I’m a showoff.
“Very good. How many walks did you do today?”
“Three,”
“Good, and sitting in the chair?”
“Three.”
“Also, good, you are recovering very well. I heard you had a mishap on one of your earlier walks.”
“Oh, yeah. I was in the far hallway, near those ‘stairs to nowhere’, and my drainage tube popped out, and I trailed liquid all over the floor. I tried to stick it back into the collection container, but was having trouble. A nurse happened by and helped me get to my room and fixed my leaking pipe.”
“Well, I’m glad you got sorted out.”
“What are those stairs to nowhere for?”
“In a day or so, we will start working you on those stairs. We will show you the proper way to go up and down while you are healing, so as not to pull on your stitches.”
“Oh, okay.”
With that, I headed towards the door. “Are you alright alone?”
“Oh, sure, no problem.”
“You are the scourge of the transplant-unit.”
“Nurses keep finding you wondering around, so getting your vitals and drawing blood is rather a challenge.”
“You don’t think that is on purpose? I’m hiding from you vampires.”
Tanya laughed. “Well, it’s too late to escape now,” and with an exaggerated Romanian accent said, “I vant to take your blood.”
My right forearm was healed enough for another jab, and though that location wasn’t horribly painful, it would throb for days after. “Your vitals look good, and I think we will take out the other drainage tube today.” She checked the absorbent bandage on my right side, and it was just slightly damp and could wait to be changed. “How have the bowel movements been?”
“Loose and regular.”
“Good. The doctor will probably take you off Lasix today, because a lot of your edema has drained. I hear you have started an exercise program, so soon we can start thinking about discharge.”
“What day is it today?”
“Thursday, so maybe Monday or Tuesday of next week, we’ll see how you are doing?”
“I’ll let my sister know, so she can start making plans. My sister Bec is going to relieve my sister Jane and will have to know when to book a flight.”
“Will your sister, Jane, be coming up today?”
“I’m not sure, I can ask, why?”
“Both of you have to complete a ‘medication awareness’ programme before you are released.”
“A what?”
“There are worksheets in your binder and some online videos you have to watch about the medications you take and what they do along with possible side effects. We have you both here for that, so if you have questions or forget something, you are not on your own.”
“How long does it take?”
“An hour or so, but you can re-visit the online videos if you need a refresher.”
“Oh, okay, well I’ll send an email to Jane and let you know later.”
“Sure, yup. Oh, here is your breakfast.” Tanya left, and Irene brought in my tray. I looked in horror, pointed and said, “What did I do to deserve more Vanilla energy drink?” Irene laughed and took it off my tray and replaced it with a strawberry one. “The nutritionist told me to do that!”
I laughed. “Well, I’m glad she got the message.”
“She also said, You are not eating enough, so she is going to send extra food you can snack on between meals. Today, there is a turkey sandwich and an extra strawberry energy drink.”
“I’m glad we could come to some sort of accommodation.”
Irene nodded, opened my blinds and watered my flowers, while I inspected my food tray.
“Everything good?”
“Yup, sufficient sufficiency.”
“Okay, see you later.”
“Thanks, Irene.”
“Yup,” she said as she put disinfectant on her hands and left.
I ate most of my meal and put my sandwich and energy drink aside for later, then wrote...
Email:
Hi all,
I’m blowing this Popsicle stand, possibly on Monday. The doctor will let me know, but I thought a heads up would be good.
Also, Jane, I don’t know if you were planning on coming up today, but apparently we have to do a worksheet and watch some videos about my medication before I get released. If you come up today or tomorrow, we can tick that off the to-do list.
Penny
A moment later, my phone rang. It was Bec.
“Hi, I got your email. That’s great!”
“That works?”
“Yes. Perhaps after the doctor confirms that discharge date, you can let me know and I will book a flight.”
“Sure. I see him every day, so I will be sure to ask.”
“That's great. How are you feeling?”
“Yah, good. I had a few rough nights, but any pain is manageable, and I still get some painkillers, though they are stingy, but that’s probably good.”
“Yes.”
“I’m walking quite a bit and have started an exercise program and spend much of the day sitting rather than lying in bed.”
“That’s really good.”
“My drainage is still annoying. One tube was removed, but the wound oozes, so the absorbent pad is often wet and needs changing. The left tube is still in, but I think it may come out today.”
“That’s sounds uncomfortable.”
“Yah, the other day, the tube popped out, and I didn’t notice, and I trailed liquid all down the hall and made a puddle. I felt like a naughty puppy.”
Bec snickered, knowing all about a naughty puppy. Their family fostered a service dog puppy, but due to her... rambunctiousness, she wasn’t able to be a service dog. Bec’s family had fallen in love with Mila, so they adopted her and all her naughtiness.
“Well, speaking of naughty puppies, I have to go take Mila for a walk before she eats the couch. I’m glad to hear you are doing well, and let me know the doctor’s timeline.”
“Will do, take care, bye.”
“Hi Penny.” A familiar voice called from the doorway. I rolled over, and there was Carolyn. Raising the head of the bed, I sat up. “Hi Carolyn, it’s great to see you.”
“You too. I hear you are doing very well.”
“I am, thanks to you and the transplant team.”
“Well, you worked really hard for this, and I’m just so happy you finally got a donor liver.”
“Me too. Honestly, I was getting a little ‘dark’ there for a while.”
“I can understand that. Six dry runs is the most here at the unit. I’m glad you continually had the strength to give it your all.
“Well, thanks. Anyway, it all worked out in the end.”
“It did indeed. Well, I just wanted to stop by and see how you were doing.”
“Thanks, yes, I’m doing well.”
After Carolyn left, I started thinking about my new liver. In a strange way, I missed my old liver; we had been through so much life together. I wondered what life my new liver had been a part of before the donor died?
I hope they had had a good life and not died too young. It felt strange to think about having a replacement part that had been a part of a different person. I’m not sure how I feel about this. I’m incredibly grateful to be alive, and I’m grateful the donor and their family had been kind and generous enough to be a donor after their death, but I felt sad they had died.
Come to think of it, the six livers that were not viable each came from someone who died. I know they would have died regardless of my need. Like, it’s not like I killed them or anything. Also, if they hadn’t donated their organs, those very organs would have been needlessly destroyed after their death, and that wouldn’t have benefited anyone. This way, the people that had died, gave a last gift to the world and sort of live on, and certainly give the family some comfort in the death of their loved one.
I’m going to have to think about this some more.
Email:
Hi Penny,
I’m in the middle of something today, how ‘bout tomorrow for that drug course thing?
Love,
Jane
Email:
Hi Jane,
Sure, that sounds good about tomorrow. I will let the nurse know.
Penny
“So, Doc, give it to me straight... am I ever going to leave the hospital?”
“Hmm... your numbers look good.”
He looked at my drainage tube on the left and said to the nurse, “That can come out today.”
“How’s the pain?”
“Still annoying, especially at night, but not unbearable.”
“I don’t want to prescribe anything stronger, so we’ll just leave that as is.”
“I was told that maybe I would be getting out on Sunday or Monday?”
“Yes, probably.”
“My sister has to book a flight as she is the one picking me up and taking care of me at home. So, should I tell her Sunday?”
“Yes, that sounds right.”
Clear as mud.
After the doctor left, Tanya said, “Why don’t we take that tube out now, before lunch?”
“Sure, sounds good. Oh, I talked to my sister Jane, and she can’t come up today, but she will be here tomorrow to do that medication educational thing.”
“Great. I’ll let whoever your day nurse is tomorrow, I think it’s Brenda, and she can bring you a laptop and the worksheets.”
“Sounds good.”
I moved to the chair so Tanya could put the large absorbent pad on the bed.
When she returned, after spreading out the pad, she turned to me and smiled. “That’s quite an outfit you are sporting today.”
“You like?” I said, standing. “It even has a cape.”
“I brought you a normal gown to change into after we take out your last tube.”
“No complaints from me.” I said, lying on the bed.
Again, the long tube was gently pulled from my body and a few absorbent pads taped in place. Tanya also changed the pad on the other side and helped me dress in a new, clean gown. I then returned to the chair, while the bed was stripped and remade.
“It’s amazing how much easier things are getting for me.”
“Yes, that’s really good. Are you having your lunch there in the chair?”
“I think so yes, I don’t want to mess up the nice clean bed with bits of food. I’m afraid I’m still very shaky and food jumps off my spoon and fork, so it’s better to be prone. Oh, heck, I meant to ask the doctor about my shakiness and if it will go away.”
“It probably will. I’ve seen lots of people even shakier than you, and once their bodies acclimatize to the anti-rejection drugs, they are fine.”
“That’s comforting to hear, thanks.”
When lunch came, I noted a vanilla energy drink and an extra sandwich. I added the sandwich to my other sandwich, and there was also some cheese and crackers for my snack pile. Lunch was good, though I didn’t get a cookie, I got a muffin. I was sure I ordered a cookie. The entrée was correct however, chicken and rice with a side salad. I had given up on tea and coffee and just ordered a small carton on milk.
After lunch, I watered my flowers, went to the washroom, and then back to bed for a nap. Several hours later I was awakened for some blood-work and my bed was wet again, as the absorbent pads were not as absorbent and as hoped. Tanya changed my pads, bedding, and gown once again, then I decided to go for a walk. I did the loop three times, then went back to my room to sit and read for a bit. Kristen arrived some time later, and we went to the physio room to exercise.
The physio room was full today. There was my neighbour on the ward and a woman I had seen down in ICU, so I supposed we were all about the same stage of recovery. Time to show off! Okay, my neighbour was way better than me in all thing's leg. He even had weights on his legs to do the leg-lifts, impressive. I think we were about tied on arm exercises, though again he had weights, so I guess I had to give the win to him. But... I was way better at standing up unaided, and as everyone knows, that’s the most important exercise. The woman mostly just sat and cried. Apparently, she was struggling with the psychological aspect of receiving a transplant. Coming close to death, going through so many tests, and rejections, coupled with the existentialist questions about life and having part of another person in you, does play on your mind.
“Look at me, I can sit and stand better than everyone!”
Friday arrived with a visit from Brenda the Vampire.
After taking my blood and my vitals, she peeled off the blood-pressure cuff and said,
“Now, I have a challenge for you.”
Intriguing.
“As you know, you will be on the anti-rejection drug for the rest of your life. You will also be on a lot of others, at least for the foreseeable future.”
“Right.”
“You have to be able to recognize the drugs and stick to a very strict schedule, so your body doesn’t reject the new liver.”
“Right.”
“The challenge is, I’m going to mix the drugs you take with ones you don’t. You have your binder with the medications you need with pictures of them. What I want you to do is pick out the ones you take and put them in this dish and the ones you don’t take in this dish.”
“Okay.”
“I’ll be back in a few minutes to check, then you can take your meds.”
This sounded simple, but I actually got confused a bit and had to refer to the pictures more than once. Eventually, however, I got everything sorted, and when Brenda returned, she said, “Let’s see how you did?”
“Good, yup, you take those.”
I fumbled with them for a minute and finally relented, saying to Brenda, “I’m sorry, my hands are too shaky to unwrap these pills from their packaging.”
“Of course.” Brenda unwrapped the pills with a practised hand and handed me the little cup of pills.
“While I’m here, do you need your pads changed?”
I nodded with a mouth full of pills, took a sip of water and said, “Sadly, yes, they are both soaked.”
“I’ll change them, then get one of the caregivers to change your bedding and give you a new gown.”
“One of those crazy gowns?”
“Not yet, but laundry is down today because of staff shortages and so you may once again be left to create your own outfit.”
“I’ll make a cape again. I’m good at capes!”
“That’s the spirit! Now, let's change those pads.”
Sitting in my damp gown, there was a timid knock at the open door and, looking up from my eReader, I saw a very nervous-looking guy, who, to my old eyes, looked to be 12.
“Hi?”
“Uhm, yah, hi., I’m Roger.”
Well, that clears that up then.
“Uhm, here is a gown, uhm, here is some bedding.”
He put both on my damp bed and left.
I put the gown on and sat back in my chair. I don’t think I’m up for stripping a bed and making it up. So, I resumed my reading.
“Hi, Penny”, said Irene a while later, carrying a tray of food. Setting it down, she said, “Do you need anything else?”
“Well, Roger stopped by and delivered that bedding, but didn’t make up the bed. Normally, I would do it myself, but I’m afraid of pulling stitches or falling or something.”
“Of course,” said Irene, and she began to strip the bed. “Roger is rather... shy, and between you and me, I’m not sure this is the right vocation for him.”
I smiled and picked at my breakfast while Irene made up the bed. I added the extra sandwich and peanut butter and crackers to my growing pile of ‘snacks’.
“All done.”
“Great, thanks, Irene.”
“Are you going back to bed after breakfast?”
“Nah, I think I’ll go for a walk, then sit and read some more.”
“Whatcha reading?”
“The Old Kingdom quadrilogy by Garth Nix. It’s a ‘YA’ fantasy series that my son liked when he was young. It reminds me of happier times, way back before I got sick.”
“Nice. Do you read a lot?”
“Yah, well, I used to. Maybe a book or two a week, back in the day, but since my liver failure, I read less and less. Practically nothing for a year or so. That’s why I’m starting off with some light reading. I think it’s too early for War and Peace.”
“I like reading, but never seem to find the time.”
“I find the time all right, but these days it makes me sleepy, so my progress is rather slow.”
Irene smiled and nodded, sanitized her hands and left.
After some food and a walk, I was ready to return to bed and listen to some music. Kristen from physio had other ideas. “Hey, Penny, do you want to do some stairs today?”
“Honestly, not really. I just came back from a walk, and I’m all tuckered out. Also, my sister is coming today, and we are going to do that medication course.”
“Okay, I’ll let you off today, but tomorrow for sure. I’m not on, but I know Jen is, and I will remind her to remind you to do the stairs.”
“Yah, okay.”
“I still expect you sometime today to pop in for some resistance work.”
“Sure, but I will do that after the drug thing.”
She nodded and left, so I dozed for a while and before I knew it, it was lunchtime.
I was in the middle of lunch when Jane arrived.
“You want a sandwich or some crackers with peanut butter? I have plenty.”
“Hi hon, no, aren’t you supposed to be eating them?”
“Well, yah, but my appetite isn’t really at full throttle yet.”
“Hmm...” said Jane distractedly, moving my various fashion attempts off the chair. “What are all these clothes?”
“I'm starting a new fashion trend... I actually, think my cape makes me look rather stylish. It’s also a very functional accessory for my walks because it covers my bum.”
“You are certainly something... though I’m not positive it’s stylish.”
I smiled as Jane continued. “It’s actually nice to see you getting your sense of humour back. You were becoming... dark, there for a bit. It’s nice to see my kooky little sister again.”
That brought a tear to my eye.
“Thanks. Now that I’m ‘repaired’ I’m thinking of opening a malt shop, where I can make the milkshakes simply by holding the cup.” I held up my shaking hands for emphasis.
“Yup, Kooky.”
Jane had her tea and didn’t really want any of my snacks. I ate some of my lunch, but lunch was a turkey sandwich, and I already had plenty of those. I did get my cookie, so lunch was a draw.”
Some time later, Irene rolled a cart into my room with a laptop. “Brenda asked me to bring this to you, so you guys can do the medication course. Brenda will be in in a few minutes to get you started.”
“Thanks, Irene.” Turning to Jane, I said, “This is Irene. She keeps my flowers fresh and my hair beautiful.”
“Nice to meet you, Irene. I’m Jane. I’m Penny’s sister.”
“Well, Jane, you have your hands full with this one.”
“Don’t I know it.”
Irene laughed, took my tray, and left after rolling her eyes in my general direction.
Brenda popped her head in and said, “I’ll be with you two in a minute. We are crazy busy for a few minutes as two new patients were just sent up from ICU, and we are understaffed today.”
“No worries,” I said to the back of a retreating Brenda.
“How are the ‘renovations’ going?”
“Good, I really hope you don’t mind my... aggressive redecorating.”
“No, go crazy.”
“I’m glad you feel that way. It’s actually, fun to have carte blanche, I feel like a designer in ‘This Old House’ or ‘Trading Spaces’. Since you may be getting out on Sunday, I probably will stay home tomorrow and finish the renovations.”
“Sure, yes, of course, though you will be missing my ascent up the ‘grand staircase’.” Jane laughed, “Is that what they call going up 5 steps around here.”
“Hey, don’t knock it, 5 steps sounds pretty ‘grand’ to me.”
When Brenda arrived, I had drifted off, and Jane was just back from getting a tea in the cafeteria. “Sorry, sorry, busy, busy.”
I sat up, and Jane put down her tea.
“Penny, why don’t you sit in the walker beside Jane there, so you can both see the screen.”
“Sure, I’ll just have a quick pee.”
“Do you need us to leave?”
“No, I’ll pull the curtain.”
Brenda and Jane readied the computer and work sheets and after a thorough hand washing, I joined the class.
“So, each of the videos is about 10 minutes long, and there are 5 of them. You can break them up over multiple days, or just go through them all now. On the worksheets, you can see there is the URL for this webpage, and you can view it anytime if you want to review it later.”
“Pretty clear,” said Jane, and after Brenda left, we started our course. All the videos started with the same introduction, and Jane and I would make fun of that, but once it got into the actual content, it was mildly interesting. I think Jane was more interested in the videos than I was, because laying in the hospital day after day had steeped me in so much medical information I was a bit overwhelmed. I had even taken a break from writing in my journal, which was kind of stupid, since now was the time for useful information.
I felt like a marathon runner, having crossed the finish line, forestalling cramping up by still moving around. I knew I still had a long way to go, but the journey had been so long and arduous, I wanted to think about anything but medical information.
After we finished our course, I noticed Jane had taken copious notes in my journal for me, and we had the worksheets. I felt ready to be released into the world, or at least recuperate at my newly renovated home. Once Jane left, I felt it was time to go do some resistance exercises. “Oh, good you’re here.” said Kristen, looking up from her desk. Rifling through papers, she came to mine and said, “Okay, I see you did 10 of everything, let’s see if you can push it a bit.”
I did 15 reps on everything, and even made 20 sit and stands. There was nobody else in physio at the time, so my competition was with myself... I won.
“Good work, Penny. I am off this weekend, so if you go before I see you again, take care. She then handed me some workout sheets. Do these resistance exercises for 10 minutes a day to build your muscles back up, and you will do fine.”
I gave Kristen a little hug and headed back to my room.
“I don’t know what to do with all these ‘snacks’ I said to the nutritionist.
“Eat them?”
“Believe it or not, I am trying.”
“Sure, but you really need protein. Your body has been through a lot, and protein is basically building material. It’s like building a house with no lumber.”
That metaphor didn’t really speak to me, so I re-framed it. “You mean like trying to sew a dress without material?”
“Yes, you absolutely need more protein. I don’t send the snacks for fun, you need the protein.”
“Hey, I have noticed my meal order sheets have sometimes been altered, is that you?”
“Yes, it is, Penny. You order too many things with carbs and sugar. Even the protein drinks are too high in sugar, you would be better off with ‘real’ protein. Meat, fish, eggs, yogurt, cheese, and some leafy greens for fibre.”
“Sure, but I’m not super rich, and all those things are more expensive than rice and bread and other carbohydrates. I will do my best, and I like protein-rich foods, but “Gimme some monaiy...”
The nutritionist looked at me quizzically, “Not a big ‘Spinal Tap’ fan, I see.”
“Well, do your best.”
The nutritionist gave up on me and left.
As Friday started, so it ended: Ellen, tonight’s vampire, took some blood, checked my vitals,
switched off the light, and left.
The night was long,
partially due to being weened off of pain medication, my sore arms from all the blood-letting, and the constant wetness of my leaking tube holes. At midnight I could get another dose of Tramadol and a couple of Tylenols, so I lay there in my perpetual dampness willing the clock to speed up.
I buzzed the nurse.
“Hi Penny, what do you need.”
“Some pain meds and my pads are soaked again.”
“Okay, be there in a minute.”
I got up and went to the washroom.
Ellen appeared with a little bag and some tape and gauze.
“I’ll change those dressings, and I’m going to put this bag on the left drainage hole because it’s the prime offender for leaking.” The bag looked like a colonoscopy bag and had a sticky gasket that held it onto your skin.
Ellen cleaned my left side and attached the sticky bag, which had a plug at the bottom for drainage. My right side was mostly dry, but since she was cleaning me up, Ellen swapped out the absorbent pads and taped them in place. With a dry gown and dry bedding, I felt much better, but still wanted some pain meds.
After checking my chart, Ellen left, then returned with some pain medication and a cup of water.
“Thank you,” I said after downing the pills.
“No problem. I hope that bag keeps you dryer. G’ Night.”
“Good night and thanks again.”
I woke up around 2 am and wished for more pain meds, but I knew the response would be ‘no’, so I went to the washroom to distract myself from the pain. I looked at my new drainage bag, and it had filled about a third of the way with a yellowish liquid. Once back in my still dry bed, I put on the sound of rain, covered my eyes with my headband-headphones, buried myself under pillows and fell asleep.
At 4 am, I woke up with my headband-headphones having slipped off and fallen on the floor. I once again went to the washroom, checked my fluid level, Hmm, over half full. Once in bed, I started my rain-sound again, retrieved and adjusted my headband-headphones and went to sleep.
6 am rolled around, and I asked for drugs, but was told I had to wait until 8 am. However, Ellen did empty my drainage bag, noted the amount on her glove and dumped it down the toilet. After she left, I cast about, but eventually fell asleep until the morning blood-letting by Gwen.
“Hi Gwen, I hadn’t seen you for a bit.”
“My son was sick, and I had to stay home with him for a few days.”
“Oh, I thought maybe you had taken a trip to a beautiful tropical island.”
“I wish! You seem to be doing better.”
“Yes, I’m good in the day, but man, I find the nights rough.”
“Most patients find that. Your body produces less cortisol at night, so inflammation is worse. Also, immune cells become more active, and with patients on anti-rejection drugs, it’s a bit of an extra battle. Your body is trying to heal, but at the same time, we don’t want it to reject the new liver.”
“Just the thought of that makes me feel crappy... I would still like some pain meds though.” I said, batting my lashes.
“Yes, I’m going to do the pills after I finish with your vitals. Did anyone do the ‘pill game’ with you?”
“Yes, I started it yesterday.”
“Good, I’ll bring the pills for you to sort while I get your pain meds.”
“The pain meds aren’t kept in the cart?”
“No, the hospital is extremely careful with the opioids, for good reason.”
“Is the Gabapentin an opioid?”
“No, it was originally used for epilepsy and helps with pain and seizures.”
“So, for me, it’s helping my shaking and pain?”
“Yes, okay, enough jibber-jabber, let’s play a game.”
After my morning ablutions, the breakfast tray came with the usual disappointing coffee, followed by nothing I ordered. I guess the nutritionist was overriding my requests, either that, or the kitchen had accidentally ordered a shipping container of Rice Krispies. Both scenarios were just as likely. I poured some milk on my cereal just to hear it snap, crackle and pop cheerfully. Though as it became soggy and sunk to the bottom of the bowl, its sadness became apparent. While pondering the life cycle of a Rice Krispie, Jen appeared. “Do you want to do those stairs now?”
“Oh, Uhm sure.” This was a good excuse to abandon my meal and move around a bit. “This is Melody,” Jen said, indicating the little girl standing in the doorway. What was she, 6? “Melody is studying physio at the University and this is a part of her training, helping out at the hospital.”
“Hi Melody, nice to meet you.”
“Hi.”
“So, Melody, Penny here is almost ready to go home after a liver transplant. She has some stairs at the front of her house, so today, we are going to teach her the best way to go up and down stairs without tearing stitches or falling.”
Both Melody and I nodded. I noted how much more assertive Jen was when Kristen wasn’t around. Interesting.
“Okay, team, let's go.”
Jen led the way with me following and Melody bringing up the rear. We were like a fearless expedition of adventurers off to scale a mountain or something. At the stairs, Jen told me to lock my walker, then take the left railing with both hands, and first put my right foot up and then bring up my left foot to the same step. I repeated this for all five steps, then reversed the procedure on the way down. Both Jen and Melody stayed with me, ready to catch me if I fell.
I didn’t.
I managed the stairs five times, then our merry crew retreated to my room.
“That was very good.” We congratulated each other several times, then Jen and Melody left and I sat in my chair, pulled out my eReader and lost myself in adventure.
At some point during the story, I had moved myself to the bed and was still reading when the hepatologist arrived for our daily meeting. After reviewing my chart and checking out my fluid level in the drainage bag, he said I was healing well. “The wound on your right side is dry, so we don’t need to bandage it anymore. Keeping it exposed to the air promotes complete healing.” While he was inspecting my incision, I asked when the stitches were to come out?
“No, these are invisible stitches. They dissolve on their own, and the little paper things will just dry up and fall off. Don’t pick them off.”
“Yes, the nurse told me that, but I didn’t realize the stitching was somehow done invisibly.”
“Hmhm.” I guess the hepatologist wasn’t very interested in that topic because he just moved onto other more pressing matters, like my bowel movements. “So, I think you will be ready to go home tomorrow.”
“Oh, I thought it was Monday.”
“Sunday is fine.”
“My sister is flying in on Sunday, and so we were told I could stay to Monday.”
“Oh, that’s fine.” He said, still reading my chart.
“Your numbers are good, and that stent is fine. Did they tell you that you have to get that removed in six months?”
“Yes.”
“Okay, I think that’s good, Sunday.”
“Monday?”
“Or Monday, yes.”
After another disappointing lunch, Bec called:
“Hi,”
“Hi Penny. So I have booked a flight for tomorrow, and get in around 2 pm. I will rent a car at the airport and go to your place and then come and get you from the hospital on Monday.”
“Remind me? Why wouldn’t you pick me up after you get the car and are already in town, instead of making the extra trip to my place?”
“Well, Jane’s train is leaving at 4 pm, and we were afraid of a scheduling problem, and that would mean you would have nobody in town.”
“I guess, but so what, I’m in the hospital. I’m not going anywhere.”
“What’s the hurry?”
“I just can’t stand being in the hospital. Everyone is nice, and all that, but I just have reached a point where I’m super anxious to sleep in my own bed.”
“Will they release you tomorrow?”
“Yes, the hepatologist said I could go and, in fact, thought I was going Sunday.”
“Are they trying to get you out early to free up a bed?”
“I really don’t get that impression. Everyone says Monday is fine, but I’m getting really antsy, and if there was anyway you could pick me up and we could just go home together, I would love that.”
“Jane said she is taking a taxi to the hospital tomorrow and then taking another taxi to the train station. We were afraid you would be sent home and she wouldn’t be there.”
“Well, they wouldn’t just kick me out if I had nobody to pick me up.”
“Hmm,” said Bec, still skeptical of my sudden need to leave the hospital.
“Well, how about we aim for Sunday, but if there is a problem with your flight or something else comes up, we switch to Plan B and you pick me up on Monday?”
“Okay, we’ll think about that. I have a layover in Toronto, so I’ll give you a call from there and we can update as needed.”
“Great, that sounds great. Sorry to whine, but I suddenly am desperate to get outta here.”
“Okay, I’ll call Jane and sort things out. I’ll call you tomorrow and see what’s up.”
“Good, thanks, bye.”
“Bye.”
Being pushy was never my thing, yet seeing the hope of home,
I became obsessed with release.
Hopefully, this would be my last night in this bed,
surrounded by beeping and blinking lights.
“Are you being discharged today?” asked Tanya as she drew some blood.
“Hopefully, yes, if not, I stay until Monday, but honestly, you all have been lovely, but I’m sick of you.”
She laughed and said, “The feeling is mutual.”
Tanya checked my drainage bag, “Hmm, I guess this will have to go with you because you are still leaking fluid.”
“Like an old car.”
“Yes, like an old car.”
“There is a lot to do upon discharge, and after I’m finished my morning rounds, I will come by and go over all that. Sound good?”
“Sounds great!”
I had moved myself to the chair and was eating breakfast when Grant stopped in. “I hear you are leaving us today.”
“Looks that way. I wanted to thank you for sticking with me through all those rejections. Your support was invaluable.”
“Well,” he said a little abashedly, “You’re welcome, Missy. We are all really pleased it all worked out for you.”
“Thank you.”
“Okay, then, Oh, Carolyn and Amy wanted me to wish you well, though you will be coming back to the liver-clinic in a couple days, so you can say a proper goodbye then.”
“I didn’t realize I had to come back so soon.”
“Sure, yah, you come a few times a week for a while, then we taper it off to once a week, then a few times a month, then once a month, then once every few months, then after the first year it’s down to a few times a year. After two years, you are transferred back to your local hepatologist, Dr. B. I believe, and he monitors your progress yearly.”
“Oh.”
“Do you have a family doctor?”
“No, they are hard to come by around these parts.”
“Yes, but you really need to find one eventually because they will proscribe your meds and, along with Dr. B., monitor your progress.”
“Well, the hunt continues.”
“Okay, good, well, I won’t add stress to your life, but keep it in mind for the future.”
“Will do, thanks Grant.”
“Yup, and good luck with the discharge. Did anyone go over the procedure?”
“Tanya is, after she finishes her rounds.”
“Okay, good. Well, take care, Penny.”
“Thanks.”
I finished my breakfast anxiously anticipating the taste of better coffee. Do I have coffee at home?
Tanya arrived around 10 am, handed me my transplant binder and a pen and said. “Is Jane coming?”
“Yes, both my sisters, Jane, and Bec, are coming today. Jane will be going back to her home, and Bec is taking over my care. She flies in around 2 pm, and Jane said she would be here, well about now.” Looking at the doorway, there stood Jane with a wheelchair piled high with her suitcase and bags of thrifted items.
Tanya turned and waved Jane into the room. “Perfect timing, I’m just going over the discharge procedure with Penny.”
“Great!” said Jane as she parked her wheelchair of thrift store booty against the wall.
“I talked with Bec, and she said you were very anxious to go home, Penny.”
“Yes, I am.”
We both turned back to Tanya, who waited patiently for our attention.
“So, first, you have to meet with the pharmacist, and I have set that up at 11:00. He will go over the meds you need, and you can pick all those meds up from the pharmacy on the first floor, this afternoon. Most costs are covered, but you will probably have to pay for the Tramadol and perhaps some other ones, but I’m sure the pharmacist, Hank, will let you know.”
“Okay.” Jane and I said in unison.
“Do you have a walker?”
“No, I was using this one here.”
“Hmm, that stays with the hospital. I’ll speak with physio about a loaner.”
“Do I need one?”
“Yes, for a month or so, you will probably need to use a walker because we definitely don’t want you to fall, and your legs may not be strong enough yet. You had a cane before, didn’t you?”
“Yes, as my health failed, I found a cane helpful.”
“Well, the walker is better at first, perhaps later you can switch back to a cane.”
Tanya checked her list and continued, “Of course, the final say as to whether or not you get discharged today is the doctor’s, but he seemed confident you were okay to go home today.”
“Yes, I spoke with him yesterday, and my discharge appeared to be good to go.”
“Good. As far as wound care goes, you can have a shower, but just let the water drip down over your incision, don’t spray it directly. Those little paper things will dry up and fall off, but don’t pick them off.”
“Got it.”
“Just pat dry gently on your tummy and don’t apply any cream or anything.” As Tanya spoke, she moved her hands in a patting motion.
“Don’t lift anything over a pound or so for a while because we really don’t want your guts to spill out.”
I must have looked horrified, and Tanya laughed. Nurse humour.
“But seriously, don’t lift heavy things.”
Jane jotted reminders in my journal, and I was following along on the discharge information in the binder, as Tanya continued.
“Eat lots of protein, but you already know about that, and you will have some pain meds, but the pain should really ease up over the next few days. If you’re still having problems, you can mention that at your first check-in on... Tuesday at 11 am. I think that about covers it for right now... any questions?”
“No, not from me... Jane?”
“No,”
“Good, then, I’ll go and a reminder Hank will be here in a few minutes to review your medications.”
“Thanks, Tanya.”
She smiled as she made her way around Jane’s wheelchair of thrifted items.
Jane was showing me some of her treasures, a broken clock, a questionable looking top, and a small figurine of a hippopotamus, when Hank arrived. He shot me a questioning glance as Jane put her things away as I nodded back, discretely.
“Hi, I’m the pharmacist, and I’m going to go over your medications list.” I nodded, and Jane settled into the visitors' chair, pen at the ready.
“First, there is your Prograf. The is the brand name of Tacrolimus, and that is the anti-rejection medication. It’s very important that you don’t miss a dose. You take it twice a day, 12 hours apart. So, if you take it at 8 am, you take your second dose at 8 pm. If you miss a dose, you can take it up to 3 hours late, but after that, just skip it. Don’t miss your next dose though, because if you miss too many doses, your body will reject your new liver. Also, only get Prograf, not Tacrolimus or some other brand. They are not interchangeable. I will give you 2 months' worth of 1 mg pills. Currently, you take 3 mg in the morning and 3 mg at night, so you stick to that, unless the hepatologist changes the dosage. I will also give you a bottle of .5 mg pills, so if the hepatologist does need to up your dosage by .5 mg, you have them already.”
“Okay.”
“The dosage will change, up or down, depending on your blood-work. Also, when you are having blood-work done, don’t take the Prograf, before they have taken the blood. That would mess up the numbers, so after the blood is taken, then you take the Prograf. Clear?”
“Yes.”
“You can get your prescriptions renewed here at the hospital or at your local pharmacy.”
“I would prefer my local pharmacy.”
“Yes, fine, but talk to the pharmacist and make sure he can get Prograf. If he can’t, you will have to get it here, there can be no substitutions on this one.”
“Other questions?”
“Yes, as you can see, I shake a crazy amount.” I held up my hands, and they danced around madly.
“Is that the Prograf?”
“Possibly, it can also be residual anaesthetic. Your shaking should reduce over time. Your body will grow used to the Prograf, and eventually, your shaking should stop completely.”
“That’s a relief. How ‘bout my hair. A lot has fallen out.”
“That’s not the medication. Your hair loss is from malnutrition and the stress the operation had on your body. Your hair should grow back over time.”
“That’s a relief as well.”
“Okay, onto the other medications. The prednisone will be tapered off over time. It is used to reduce inflammation and to calm your immune system down and help your body adjust to the new liver. Again, you must not miss a dose.”
“Yes, I see it on my list, I’m at 20 mg.”
“Yes, good you have that list, I won’t go into too much detail then, but make sure you follow that list carefully. If you need a new list, I can send one to you via email. Some people find a checklist useful, and you live alone, right?”
“Yes.”
“So, a checklist would probably be helpful for you, at least to start with.”
After going over the medications on the list, Hank said I could pick up my supply from the pharmacy on the first floor of the hospital any time between 3 pm - 5 pm. If the pharmacy was closed, I couldn’t be discharged. Ok, then, priority one: Pick up Meds.
Jane was showing me a few more thrifted items, when the doctor arrived. “I have never seen a... dish? That colour.”
“It’s carnival glass, my grandmother had one just like it.?”
“Hmm, So, Penny, I’ve taken a good look at your labs and yes, you are ready to go home.”
“Wonderful.”
“Did you talk to the pharmacist?”
“Yes, he will have my meds ready after 2 pm today.”
“Good. You must never miss a dose.”
“Yes, I’ve been told.”
“Also, don’t lift anything heavier that a couple of pounds for three months.”
“Yes, I’ve also been told that.”
“Good. The drainage on your left side will stay in place, and we may take it off on Tuesday, but we will see how it looks. Did anyone show you how to drain it?”
“Oh no, I forgot to ask.”
“I’ll remind the nurse to show you, and we will also give you a measuring cup to check the levels.”
“Okay.”
“You should drain it yourself because the fluid is kind of toxic, to anyone but you. The nurses know how to properly deal with it, but at home, you should have someone else do it.”
“Oh, is it like, really toxic?”
“It’s not melt your skin off toxic, but it could be a problem for someone.”
“Okay.”
“You can write the amounts down in your binder, and when you come to clinic, you should always bring your binder.”
I nodded, and Jane wrote something in the journal.
“Clinic days are usually on Wednesdays, but for early on, we have you come a few times a week, often Tuesday and Thursdays. Before clinic, you always have blood-work and never take your meds before the blood-draw.”
“The pharmacist said to not take the Prograf, should I not take any?”
“Yes, we prefer you take none, because we get a better reading of your blood chemistry and also sometimes people forget to take their Prograf if they have already taken their other meds. It’s easier to just get your blood taken in the morning, then take your morning pills. The blood-lab opens at 8 am, so if you get here early, you can take your meds before 9 am. Also, that gives the liver-clinic time to get the results of your tests, at least some of them.”
“Sounds good.”
“If we look at your blood-work after you go, we may call to have you adjust your Prograf levels or add or discontinue other medications.”
“Do I always have to come up to the regional hospital for blood-work or can I have it done in my hometown?”
“For the first few weeks or so, you should come here. In the future, we will let you know. As your blood chemistry stabilizes, you will require less frequent blood-tests and getting them done locally should be fine.”
After the doctor left, I asked Tanya to show me how to empty my drainage bag. She gave me a plastic measuring container and showed me the little plug at the end. “Raise it a bit, undo the plug and then let it pour into the container. You should mark down the level in your binder, then dump the cup into the toilet.”
Simple enough.
“You should do this, because the fluid is toxic to others.”
“Yes, the doctor told me.”
“Good, you don’t need gloves, just wash your hands after, but if your sister is touching this liquid, she needs gloves.”
“Okay, I’ll let Bec know.”
“I spoke with physio, and they said you can rent a walker, month by month and gave me a list of local places that sell medical devices.”
“Oh, so I guess I should look into that if I want to get out today.”
“Yes, you will need one and one set to your height. I’ve asked Jen to stop by and measure you and then you can get the right walker.”
When Jen arrived with a tape measure and gave me the numbers I needed to get a walker set to the proper height, she also gave me a list of medical device suppliers in the area.
“Okay, looking at the list, and saw most were from here and there was only one from my hometown.” I figured I should start with that one because when I have to return it, being local would be easier.
“I’m going to call a few places and see about the price and availability.”
“Sounds good, I’m just going to go the Cafeteria and get a tea. Do you want anything?”
“No thanks, I’m good.” I am not a multitasker and trying to do anything while I call on the phone always ends in disaster. Jane left, and I got to calling.
“So, how did you make out?” asked Jane when she returned.
“Not one single supplier, and I called them all, had a rental at my height. I asked Jen what I should do, and she was useless. “She just shrugged and said, well you need one to be discharged.” Quick, break out the welding kit! “I hate it when people tell you the rules, but can never come up with a solution.”
“If I buy one, they are suddenly available.”
“Funny how that works.”
“Hilarious!”
“Bec called during her brief layover, but she couldn’t really do much, travelling as she is, so I guess I’ll punish the credit card once more. This being sick is super expensive. The one advantage of buying rather than renting is I don’t have to return it in a month. The local supplier has gone out of business, so I would have had to rent from here. The next challenge is getting one on such short notice.”
After calling around, I found you could ‘hire’ a freelance occupational therapist, and their fee and part of the fee for the walker were covered by a government programme. The freelance OT would come to the hospital, check me out and then go get the walker and deliver it back to the hospital. She would fill out all the government forms, so I only had to give her my VISA number. Ok, this sounded like a scam, and I was quite nervous, but I was also desperate, so, not a great combination to avoid a scam.
Finally, however, I figured I had brutalized my VISA card to the point, where, even if this was a scam, they wouldn’t really get away with a lot. So, I made the call.
Phew! It all worked perfectly. The OT was awesome, got a walker all set up, and it was even the right colour, and brought it to the hospital. I think Jen was mad that I did an end run around her, but she refused to be of any help, so in the end I was glad I had taken matters into my own hands.
Around 2:30 pm, Jane and I were preparing to head to the pharmacy. I was still in my hospital gown along with my cape, and I wanted to try out my new walker, when Tanya said, “No, patients must be in a wheelchair whenever they are off the floor.”
That seemed a little weird, but maybe they were afraid of falls or something. So, Jane had to push me in my wheelchair, and we made our way down to the pharmacy. Once there, I realized I had forgotten my binder, and I need that to confirm my medications, so Jane went up to pick up the binder. I sat in my wheelchair, trying to take up as little room as possible in the tiny pharmacy.
When Jane returned with the binder, she presented it to me and said, “Bec arrived and is hanging out in your room. I figured it was easier for me just to come down since I know the way.”
Perfect. My discharge was less stressful than I'd feared it would be. After so many ‘dry runs’, I almost expected bad outcomes. Perhaps this is to be the beginning of things going right.
Almost as that thought finished, the pharmacist said, “Wait, there is a problem.” Thought too soon.
The pharmacist indicated a drug on the list, and Jane replied, “Oh, yes, they switched that drug to the other one; the nurse told me.”
Strange, I never heard that, I must have been asleep or something.
“Oh, right, here is the note, good, yes, that’s right then.” It was only a $30 charge to my credit card, which was a relief because I know the Prograf alone costs $1500.
With the big bag of meds, Jane wheeled me back to my room, where I gave Bec a big hug. Jane gave Bec a hug. I gave Jane a hug, we all gave each other hugs. That moment in the hospital room marked the climax of countless tests, 'dry runs,' crushed hopes, and newfound hope. After years of living under ‘The Sword of Damocles’, I was given a new chance at life.
It was one of the happiest days of my life.
