I originally wrote this post back in 2013, less than one year after my liver transplant. Today and as it does frequently happen, I was talking about the ordeal with one of my friends, and it reminded me that I should revisit this post and have a good read through it. I had put it almost to the back of my mind, but it’s never truly in the back of my mind. It travels to the front on occasion, and because I am finally having the surgery I need and I have a few other issues going on, it’s beginning to slither its way towards the front of my mind more often than I care to think about it. However, I thought it would be good to share the story again, go through those days when they were more vivid in my memory and add them to my new version of my blog. I appreciate your indulgence if you’ve read this before, but I had updated some facts since 2013 the reason for the failure has been discussed more often with more speculation than when it happened when they had no clue as to the cause. So, hang on tight folks because here it is…
Thirteen Days and a Fuzzy Liver with Whiskers
The decision to begin the story of my recent liver transplant in place of writing about my recent divorce was partly due to my friends, and even some of my more avid readers. It was nice to see so many people reading my things and letting me know their thoughts. Thank you for that.
As per my usual, I have had to google several topics before putting together my first thoughts; I feel this will be at least a three part post. The first part is what acute liver failure is all about and those early days when I arrived at Blackheath Hospital and subsequently transferred to King’s College Hospital. Next will be the transplant itself, what it entailed, a lot of medical jargon that from I have read so far is pretty grim and doesn’t give a warm, fuzzy feeling, along with how I felt when I woke up and my time on the Ward. The (hopefully) final chapter, which is where I was in 2013, seven months after going home, well, not quite seven months, and how I’ve managed and coped.
There was a second surgical procedure that followed shortly after the transplant which required me to stay a bit longer than the actual operation itself, but that will be explained as the story unfolds (Part Deux). Even just starting to re-write this now, I’m in a full sweat, indeed! I am not sure people can quite grasp the gravity of the situation, how it changed my life and changed my whole persona, except for those perhaps who saw me in those initial days before the transplant. Since nobody knew it was happening, that short list consisted of my daughter, my son, brother and very dear friend, Lucy, all of whom I eternally grateful to have in my life and without them, I would NOT be here rewriting this story again today.
I was honestly feeling fine. Some bug had bitten me in the late summer of 2012, where I kept my horse. The bite was on the inside of my knee and although it kept bothering me, me being ‘strong as a bull,’ not a fan of doctors, I just let it bother me until late October when I finally went to see my GP. It wasn’t itchy or visible; it just made me nauseous whenever I would drive with my riding boots on. I now know that this bug bite had nothing to do with the liver failure, but at least it got me to a doctor when it did as this was a pivotal point to having my life saved. My GP said they wanted to run blood tests to rule out the usual things and one of the tests came back with an increased level of autoimmune hepatitis along with a positive result for Coeliac disease. Both can show up, but it usually means that one has Coeliac. Now, we know that I did not have any form of autoimmune hepatitis and that was ruled out only in 2015 after more studies of my old liver. I contacted my Gastroenterologist that day and told him what was going on, and he concurred that it was likely, given my history, that I had Coeliac as well. So, an appointment was made to see him two days later, and he ran the same blood test and also scheduled me for a scan of my duodenum, as it’s the only way to confirm a diagnosis of Coeliac; this was planned for the following Monday. Sunday morning, I woke up and saw that I looked slightly yellow, but I couldn’t be sure because of the lighting in my en-suite, and I felt fine. I also thought nothing of it because I would be seeing my doctor the following day for the other tests. I went riding, came home and looked in the mirror again to find a very yellow looking person staring back at me. Okay, I said. This scared me only slightly, but it did scare me; but, I was going to my doctor the next day, what difference would one day make?
When he came into my room at Blackheath, he just said, “You’re yellow!”
“Yes,” I replied.
“When did THAT happen?” he asked as he had just seen me three days earlier.
“Okay, after we check your duodenum, I’m going to run another set of blood tests and send you down for a scan of your liver while you are here and we shall see what’s going on.”
I responded with, “I’m not going to die, right?” really just asking in a joking manner and laughed as I asked the question.
“I wouldn’t be doing my job if I let that happen,” he replied.
This question and the answer became a recurring theme over the next two days as I could see his concern ever growing and his response was getting softer in tone and him becoming a bit paler every time I’d see him. But, after all, I wasn’t sick. I even rode after my Coeliac test and again the following day, driving my car, doing a bit of shopping, life seemed normal except that I was getting increasingly more yellow.
He scheduled the liver biopsy for that Thursday; so four days had passed since I saw the first tinge of yellow in my skin and eyes. I went riding on Wednesday and then went in the for the test on Thursday with more blood tests, of course. The previous tests were showing my liver enzyme levels (ALT) were normal, yet I was getting more and more yellow with each passing hour, never mind day. The biopsy showed normal levels in my liver with no damage as well. Suddenly, my ALT went up to 893, I wasn’t entirely sure what that meant exactly, but I knew that it wasn’t right. My good doctor rang me and said he wanted to run more tests over the weekend and to come back in on Friday morning but not to be alone Thursday night. Errrrr….that sounded ominous…don’t be alone Thursday night. Right. I had a friend come and stay with me that evening, but he was useless (the real test of a friend), and I asked him to leave first thing the next morning. He never did come and see me in the hospital or even since I had been home. (Eventually, he came to see me because he needed a place to stay when he was out of work…charming). At any rate, I drove myself to Blackheath Hospital Friday evening, and a couple of friends and my son came by to bring me some oranges, Strawbs, flowers and well wishes; we all laughed at my new Homer Simpson look, and I said I was sure that all would be fine. I remember Tom, my son, constantly googling causes, cures and reasons for his mother’s new not-so-fashionable yellow skin colour, arguing with my doctor that it had to be some exotic disease that I caught somewhere, somehow. My doctor turned up later that night to check in on me. So, my doctor, on a Friday night, his night off came to see me. I think this was starting to sink in that I was in trouble. I was getting more frightened now — Saturday morning. I remember my son coming to visit and once again, my good doctor coming in on his weekend off. My son still insisting on all of the different things it could be, including bilharzia, which he had done a project on in school the previous year. No, no, no. It was none of those things, but he had no idea what it was. The autoimmune levels were negligible, so he was sure it wasn’t that (and it wasn’t). I was prescribed a drug called Nardil for my IBS, for several months at a very low dose. But usually, it causes problems in the first few weeks of taking it, and I had been on it for far too long at that point with good blood test results for this to be the cause; it wasn’t. So, he was just unsure of the diagnosis or prognosis.
My new memory is that of being in an ambulance with my faithful doctor climbing in with me telling me we were on the way to King’s College Hospital as it was the best place for me to be because my liver had now totally failed. I have a vague memory of brushing my teeth Saturday night before turning in, but this was now in the middle of the night, and I don’t recall what prompted the sudden move other than my vital signs must have taken a turn for the worse, and my doctor was out of his depth at this point. There are several things to occur with Acute Liver Failure, as described by Wikipedia and other sites. Wikipedia happens to have it more layman terms than others, so here it is:
Acute liver failure is defined as ‘the rapid development of hepatocellular dysfunction, specifically coagulopathy and mental status changes (encephalopathy) in a patient without known prior liver disease.
The diagnosis of acute liver failure is based on physical exam, laboratory findings, patient history and past medical history to establish mental status changes, coagulopathy, rapidity of onset, and absence of known prior liver disease, respectively.
The exact definition of ‘rapid’ is somewhat questionable, and different sub-divisions exist which are based on the time from onset of first hepatic symptoms to the onset of encephalopathy. One scheme defines ‘acute hepatic failure’ as the development of encephalopathy within 26 weeks of the onset of any hepatic symptoms. This is sub-divided into ‘fulminant hepatic failure,’ which requires the onset of encephalopathy within eight weeks and ‘subfulminant,’ which describes the onset of encephalopathy after eight weeks but before 26 weeks. Another scheme defines ‘hyperacute’ as onset within seven days, ‘acute as the onset between 7 and 28 days, and subacute’ as onset between 28 days and 24 weeks.
I was hyperacute, although some have referred to me as subacute as they’ve not dealt with very many hyper acute cases before. The next 24 hours are a bit of a blur, and I have had to ask my family and Lucy a lot of questions to confirm or verify the events as I thought they happened. I remember them telling me that my liver had failed and I was put on dialysis, which is a standard protocol as kidney function usually fails at the same time as liver failure. But, then within two hours, I was removed from the dialysis as my kidneys, and my other organs were functioning at 100%, this is not typical. I was brought in the Liver ITU immediately and was told shortly after my arrival that I had liver failure and that unfortunately, they were not going to be doing a liver transplant. Wait, liver transplant, not going to do it, liver failure, dialysis? My brain was losing its functioning, I couldn’t follow what they were saying or doing, and I wasn’t sure why they were doing these things to me. I just thought that they were trying to kill me. I thought if they could give me some tablets or antibiotics, I would be excellent. I was told that they would put me in a coma in the next day or so, depending upon how quickly I went into a Grade IV coma, as I was at Grade III already and they were hoping my family could get there before that happened and within four days. Four days was lingering in my mind. I would just peacefully die in my sleep. End of story. Four days. Four days. Four days. We are so sorry.
By the way, at that point, I had the memory retention of about 35 seconds, and the hallucinations were getting worse. Admittedly, I am just hallucinating all of this, and I’m still at Blackheath Hospital having more tests done! Die? Me? I only came in for a few tests. It can’t be happening; it’s not right. I’ve only just started doing Dressage, and my son just started doing his A levels at a new school. Why are these crazy people saying these things to me? But wait, what did they say? I cannot remember! I was, indeed losing my mind.
Surely they were talking about someone else, in the next room maybe. Then I didn’t even know my name, or where I was, or that I had children. I couldn’t remember that I had children! I did, however, know that I rode a horse and that I was good at it. Where am I from originally? I don’t know, somewhere, I know it was somewhere. What’s my birthdate? I don’t have birthdays; I stopped having them. What are your children birthdates? I kept referring to my son as my daughter and my daughter as my son. These were some of my typical answers and why they weren’t willing to do the transplant. My brain was dying. The brain function was too far gone and not worth saving, especially when they didn’t know WHY my liver failed so quickly. More blurry memories…reality and hallucinations were fluctuating in and out of my mind. I couldn’t tell what was real and what was not. But I knew I was scared.
I was petrified to sleep, thinking that they’d put me in that coma and I wouldn’t wake up. I tried taking one of my central lines out of my neck and getting out of the bed, only to be told I needed to stay and behave. I’m not sure if I felt like a naughty child or someone that if I could just leave that place, I’d be back to being okay and it wasn’t really happening to me. I’m not entirely sure how many hours passed when Andreas, my surgeon can in or I met with him somewhere, that bit is still unclear. Andreas, the head of the liver surgeons and he said he wanted to save my life but I needed my brain to function normally and block the toxins that were slowly, or not so slowly, going into my brain from my liver. I begged him not to let me die and I made him pinky swear with me that he’d save my life because my babies needed me, my horse needed me and I wasn’t ready to die. He said he’d never pinky sworn with anyone before, but he would do that for me because he was NOT going to let me die.
I was to be listed. Clearly, I couldn’t just be listed; people sometimes wait years and they had just told me that I had four days, FOUR DAYS! Evidently, there are special lists in the transplant world; I was lucky enough for someone to take the decision to put me on the top of the special list. It meant that I would to the number one spot for a liver. I would be getting the first liver that became available anywhere. One came in the following day. I was so relieved! The day after I was listed I already had a liver. Although I should mention here that I kept referring to it as a kidney! Yay, I had a kidney! No, Liver! Twelve hours later, Dimitrius, one of the other surgeons on the team, came to tell me that it wasn’t good enough for me. It was too fatty.
“I don’t care! Give me the liver!” I protested. “It’s better than no liver, which is what I have no! Please, please, please!” It would be okay for someone older, less fit, but not suitable for me. I kept thinking how am I ever going to get another liver in the next two days, one was a miracle, two was not possible. Andreas and Dimitrius kept coming in to tell me it would happen, a liver would come, I would live. Keep the faith. Those doctors and consultants, and residents and nurses were all pulling for me. I found out just a short time ago, in 2013, that I was the only one in the IT that was actually coherent, awake, having conversations. Over the few days that I was there, one by one, they were either being put into comas, or they weren’t coming out of them and they were leaving, not on their own accord. In one day, the gentleman, not John, had been bumped into a room in the Step Down Unit as they needed his bed, passed away and shortly after that, a young in the cubicle next to me also passed. People were dying all around me; that was normal for that unit, there weren’t enough livers to go around and only so much time someone could wait. There were also complications from the surgery that happened. It wasn’t a place anyone wanted to be in.
Along with my family, there was Lucy. She was there with me a lot. She would hold my hand, be as positive as she could possibly be, whilst looking at a friend who was literally dying in front of her eyes. I could see in hers that she was sad, but putting on a brave face. My brother had the same look on his face that she had. One that in all my life I had never seen in him. Even when our parents passed away, he was still just Jay, my big brother. Now, as much as he was my older, bigger brother, he seemed too fragile and genuinely scared that he was losing his baby sister. It scared me that he was looking at me like that and he would hug me and tell me how much he loved me and how sorry he was each he came for a visit. That didn’t make me so comfy either, but it all helped me realise that I had to keep fighting. I had a visit from the Rabbi from our synagogue, he tried to keep positive and said that all the people from the synagogue were praying for me to get another liver. Two more people from the synagogue came in those couple of days, one a former doctor at King’s, who was very friendly with the head of King’s and another was a friend that would try and brighten my days with photos of lovely springtime flowers (even though this was now November). I had to keep showing them I had hope. There is a Jewish prayer that is recited at night before you sleep, I’d learned to take cat naps instead of proper sleep and I’d say that prayer every single time I’d fall asleep. I remember speaking to G-d one day and apologising for the number of times I was saying it, but I wasn’t going to stop saying it because basically, it’s a prayer that says watch over me and let me wake up for another day, or in my case, another moment. Frankly, I wanted to keep waking up and not sleep forever yet. So, I apologised every time and carried on saying it.
I was sick all night Friday night, I couldn’t sleep, I was uncomfortable now. My platelet count suddenly was too high and I started bruising and bleeding more and more throughout the night, they were giving me plasma transfusions. I was aware that night that day was my fourth day, the day that they all said I was going to die. During those couple of days, which still seems like months, an eternity, I tried to keep the spirits up of the patients that were in the LTU that were there temporarily. John, an elderly chap across the hall (not really a hall, we were each in glass cubicles with all the necessary equipment in each with sliding glass doors and walls that didn’t reach the ceiling and sliding windows on either side for when our nurses were on breaks. It reminded me of the television programme, House and the rooms the patients were in on that show; everything all just right there and our nurses by our sides, with the teams coming around twice a day and going through the massive books which detailed every single thing that was happening. I asked a lot of questions and on the first day, before I got my wits about me again, with my 35-second memory retention, I kept asking my daughter to reiterate everything or verify everything. I kept thinking of one of my favourite films, The Out of Towners with Jack Lemmon and Sandy Dennis. George was always telling Gwen to verify whatever he was saying, write that down, Gwen. Can you verify that Gwen.
Back to Friday night. My son had left me my phone for the first time since I arrived at King’s, so I thought since I was awake and this was probably the last time I’d be looking at Facebook, I’ll have a look. I wanted to see everyone and what they were up to. I had no idea that my daughter had been using my page to let everyone know what was going on. I think I went back a few days and people had started posting that they were worried that I hadn’t posted a single post up in a few days as in those days I was a social media junkie. Then I saw that she posted that I was awaiting a liver, well, the flood gates opened evidently and suddenly I was seeing hundreds of posts on my wall of thoughts, prayers, well wishes, candle lightings, the lot. With my less than perfect vision at that point, it wasn’t easy to read everything, but I started to cry, it was early morning by then and I knew my time was coming to an end. At around 0530, my nurse, Matilda, asked me if I wanted to go down to the step-down unit and have a shower. A shower??! Oh yes, yes!! I had only one other since I was there and the rest were sponge baths in bed and hair washings in the inflatable sink (I did quite like those). But, if I was going to go, I was going to go out smelling fresh and clean. So, I gathered all my Shu Umera© shampoo and conditioner, Creme de la Mer goodies and got into the wheelchair for a breezy ride down to the step-down unit. The breeze was so refreshing and I remember closing my eyes and picturing I was riding Wills with the wind blowing on my skin and my hair and it felt so good. Almost normal. I took the shower on my own; I didn’t want to rely on anyone even then and it felt heavenly; washing, a little bit of self-dignity and smelling clean and feeling clean; not sterilised and with hospital soap. I was going to dry my hair with the bed warmer when we got back to my cubicle. But on the way back, we were met by Amy, one of the transplant coordinators. They had a liver for me! I was already smiling from ear to ear from my shower and ride down to the step-down unit. I looked at her and said, “Wait, is this like the last time? Are you going to tell me in a few hours it’s not good enough??”
“No” she replied. “They had received the liver during the night and had made the decision not to tell me until they had made sure that this was a definite go ahead so I wouldn’t be disappointed again. My family needed to be notified. I think I might not die today. We rang them and rang them but no answer! I did not want to go into the theatre without seeing them. With only a 20% chance of survival, I needed to see them, say goodbye and tell them how much I loved them. They told me I had plenty of time, the transplant wouldn’t take place until around noon and it was now just coming on 0700. I rang them again and was literally screaming into the answer phone so someone would hear me, “Wake up!” My daughter finally heard it and I told that they needed to come quickly as they had my liver!
They were there within a half hour, no time for showers, shaving or changing. My daughter, son and brother all came and the next thing we knew, four of the Anaesthetists were there going through the process of being anaesthetised, and that they would be back shortly to start the process. No more than an hour later and they were back. I had already signed all the papers when they were going to try the first transplant, so no need this time. They wheeled me down to theatre and I would see them in a few days depending upon how my body was taking to my new liver. Surgery could take between ten and 20 hours and I was awake eighteen hours after that, with my family there. I was still alive! When I was asleep, I kept picturing my new liver looking like a cute little fuzzy kitty with whiskers that would be just so cute to have inside of me. Hence, my liver then became the fuzzy liver with whiskers after that. The thought of them putting some big lump of an organ in me just wasn’t appealing, but the cute cuddly liver with whiskers made me happier. I even drew pictures of it, but somehow didn’t name it.
It was a 51-year old man that donated my liver and he was a heart beating donor, meaning, when I got his liver, he lost his life. Sadly, there was no hope for him and he was a donor. I grieved for him and his family but couldn’t have been more grateful that he gave me more time with mine. I still wonder what happened to him, who he was; was a father, a husband, someone’s son? He was, after all, just a couple of years older than I. It made me sad, but happy at the same time. Not happy, blessed.
So this ends Part Un. I’ve brought you up to the transplant in my eyes, but not the actual procedure itself and how I was when I woke up, except that I was immensely grateful that I was opening my eyes to see the people I loved the most all standing there. Lucy came the following day and was also there the day before the transplant, bringing me her handmade Christmas party invitation that she put on my shelf as something I couldn’t miss, so something to look forward to; don’t die now, you’ll miss the big Christmas do!
I know that there are many more bits and pieces that I’ve missed when my memory wasn’t working so well, but this was the crux of how things transpired leading up to the transplant. I will endeavour to write the other two pieces this week, but it does take a lot out of me just reliving it, so I may have another post or two about other things, love, life, horses, before then to relax my brain. Although I don’t really relax these days!