My Transplant Twenty-Five Years On

I’ll write this as if this was a letter to my donor:

I’m an artist in my 40s, based on the south coast of England with a lifelong fascination with rivers, water and weather amongst other things. I was also the young lady who received your liver 25 years ago this month.

This is the Good Luck card signed by the nurses on the ward on the night of my transplant.

I would really like to thank you the life I would not have had if it hadn't been for you consenting (by carrying a Donor Card) to donate your liver at the time of your death. I have now lived longer with my transplant than I did with my own liver. As with rivers, our coasts and weather, there have been highs, lows and storms. Among them the storm which swept into my life out of the blue two years ago after a relatively settled spell (ITP and All That). I’ve since bounced back and I’m painting on.

This (left) is some artwork I did around the time of my transplant. I did lots of drawing while in hospital. It was one of the things which kept me sane.

This (below) is artwork from this year, sold at an exhibition in the spring. You’ll see that my style has changed and my skill has (hopefully) improved thanks to art courses, membership of art societies and advice from other artists.

The fuller story of the time around my transplant and condition which preceded it is in the entries: My Story – AIH and My Story – Liver Transplant and After respectively. The gist of it was I’d lived (unknowingly) with AIH for at least five years beforehand while I was studying for my A’levels, then university. I frequently felt very down tired like a river might do in drought, though not obviously unwell. Yet I had this nagging feeling that something somewhere wasn’t right. I was admitted to hospital a few weeks after achieving my degree (I was among the top in my year, despite the illness). By then my liver was irreversibly damaged and I was at very high risk of fatal internal bleeding. Clearly I must have been a very urgent case and therefore near the top of the waiting list, but I was extremely lucky:  just hours after the consultant put me on it I heard that I’d be having my transplant that night, your liver being available. I still can’t believe how lucky I was. I was lucky, too, to have a good surgeon who regularly came onto the ward after my operation to see how I was getting on.

Get Well cards and letters

The recovery was quite a long haul, but I did it, thanks to wonderful care and support I had from the medical and nursing staff. My bedside was coloured with Get Well cards and my drawings.  I continue to be regularly monitored by the liver team there, by my GP and now at my local hospital for the conditions I developed subsequently. Invariably these healthcare people are working under pressure with financial and time constraints. I'm also really grateful to my family, especially for my parents. In many ways, it was harder for them with all the stress, worry and anguish.

So, that's all about me. I didn't know much about about you - I don't know whether this is still the case, but back then, the policy was not name names of donors or recipients. I thought that was simplest and for the best. All I know is that you were a young man, about my age at the time of my transplant and shared my blood group. I don't know where or how you lived, but I understand your life was cut short in some sort of road traffic accident. If it wasn’t for you, I wouldn’t be here today, nevertheless, I am still saddened by the fact that, in order for me to live, someone like you had to die. I feel this not just for the life you didn't have, but also for the family and friends you left behind. While my parents had hope for me twenty-five years ago, yours were full of grief which would be with them for the rest of their lives. This was something that hit me hard during the months after the loss of a youngster among my family circle during the 2000s.

Having a major, life-threatening illness and a major, life-saving operation when I was still relatively young has left me with a different perspective on some things than I might have done otherwise. Firstly, I’m very thankful for the time I’ve had. I know that if I’d had my liver disease at any time before the late twentieth century – even when my parents were young adults – I wouldn’t be here talking about it now. 

Secondly, I’m a firm believer in showing compassion for people living with long term illness and disability. One way or another, anyone from any background can fall on hard times, through absolutely no fault of their own.  Part of this support and compassion should be a publicly funded healthcare system, like the NHS in the UK, which should be the hallmark of a modern, civilised society, not an outdated concept from the last century.

Finally, I whinge a lot like everyone else, usually about silly things, yet I try to be thankful for what I’ve got. When things looked bleak in the weeks before my transplant, it helped me tremendously to keep in mind that there’s always someone somewhere worse off.  It stopped me from being self-pitiful and wondering Why Me? when I realised I’d been seriously unwell for so long. Usually, I didn’t have to look far, be it around the ward, stories in the paper.

I’ll end this letter by saying that I’m thinking of you this month and many many thanks again for giving me the gift of life.

When I had my operation, the longer term survival statistics were improving rapidly. Nonetheless, organ transplantation generally was a still a relatively new procedure. Likewise some of the anti-rejection drugs. I think they’d only been using cyclosporin for a few years before they gave it to me. Tacrolimus, the similarly acting but more powerful immunosuppressant I’ve been taking since the late 1990s, had been tried in Japan with very promising results, but not in the UK.  After my operation, I met people who had had liver transplants anywhere between a few days to a couple of years before me, but I hadn't heard of anyone who had gone beyond about five years. I believe the transplant coordinator couldn't say beyond five years when she spoke with my parents.  Now there are lots of people who were transplanted upwards of twenty years ago. I hope this gives reassurance and encouragement to those who have had a transplant recently.

My ITP two years on

My ITP two years on

This is an overview how things have been during the past couple of years:

My ITP developed despite having taken medication to dampen down my immune system for more than twenty years. In the late 1980s, I’d had a liver transplant, also for an autoimmune condition AIH, an inflammatory disease which attacks the liver. Since the transplant, I’d been on a low dose of the prednisolone, along with tacrolimus (Prograf). Even, though these immunosuppressants were very effective at preventing me from rejecting my new liver and stopping the AIH returning, they did not stop my immune system from producing new autoantibodies against my platelets. I also developed the IBD Crohn’s colitis about ten years after my transplant which is associated with an overactive immune system. Thankfully that stabilised with a course of increased prednisolone and mesalazine, an anti-inflammtory drug which works on the gut. I then had nine years of stability in which I’d almost forgotten I’d had a transplant or had ever been unwell. My ITP appeared to come on suddenly, during summer 2012. A month before, I’ been feeling well in myself, enjoyed walking in the Highlands and of Scotland and south Wales. My artwork was going well, too.

I talk about the onset, diagnosis and the months after here [ITP and All that]. The upshot of this was, like everyone else with ITP or a close relative of an ITPee, this was a very difficult, worrying time. Especially so the ten days I had in hospital. Not only all the bruising, purple rash of petichae and bleeding because of my very low platelets, but it also brought back unhappy memories of my time in hospital with the AIH before my transplant. Once again, my blood wasn’t clotting and I wasn’t responding to steroids. The side effects of the increased prednisolone, especially not sleeping and the mood swings made the noisy difficult vibe on the ward all the harder to deal with. I came home after responding to IVIG, but had to be readmitted four weeks later when my platelet count dropped again. It was then that the transplant team got involved and suggested a change in my immunosuppression suspecting tacrolimus as the culprit. The good news was that, when they introduced mycophenolate mofateil, my platelet count bounced back to normal. However, stopping my tacrolimus wasn’t so good: not only did my platelets crash by over 150 points requiring a third round of IVIG, my liver function tests deteriorated. My haematologist wasn’t sure of the best way to treat and manage my ITP in the longer term. Being on about half a dozen different drugs for three different conditions made my case a complex one. Why did my platelets drop so dramatically? Was it just the reduced immunosuppression or was the flu’ jab as well? The next few weeks / months were worrying and very uncertain not only for me but my family as well. Towards the end of 2012, after a liver biopsy the transplant team restarted me on tacrolimus. As I’d suspected, the rejection I’d had during the 1990s had resurfaced when it was interrupted. They kept me on mycophenolate, with my prednisolone is back at its maintenance dose. This seemed to benefit both my liver and my ITP. With this new combo, my platelet count has stayed three figures since late 2012.  There have been blips, in both my platelets and my neutrophils, usually just after an infection, though this year (2014), I’ve had two colds without any complications. It took a few months for my liver tests to recover completely and 2013 was my much a year of investigations and monitoring: in addition to the blood tests with the haematologist, the transplant team arranged for me to have two scans to better understand what was happening with my liver. A review of my IBD was also overdue. Hardly a week went by without having to think about booking / having a blood test / attending and travelling to clinics. Nonetheless, I was very grateful and reassured by all the monitoring. I continued to feel anxious and had try hard not let unhappy memories of the hard times intrude, though these lessened as time marched on with my platelet count remaining reasonably stable.