While Andy was always aware that he would need a kidney transplant due to a rare kidney disease, his liver was also becoming affected so he would need a liver transplant too. Thank you for sharing your story, Andy
I was born with a rare genetic disorder called autosomal recessive polycystic kidney disease (ARPKD), so I have always been aware that I would need a kidney transplant to continue living. But only in the last five years did I realise that my liver was affected by it too and I would also need a liver transplant.
I had a combination of symptoms from the kidney and liver side of things, including headaches, muscle cramps, hypertension, brain fog, frequent urination and fatigue. As my health deteriorated, these symptoms became more frequent and often worse. I would describe a lot of them as my ‘norm’ and I never lived without needing the loo all the time. Only on reflection I can see the impact it was having on my life – constantly having to get up for a wee in the night disrupted my sleep greatly and made it hard to concentrate.
From the liver perspective I developed portal hypertension secondary to liver cirrhosis, meaning I was particularly vulnerable in contact sports. It was frustrating for me being a keen hockey player and skier and resulted in me being less gung-ho in my sport, often deciding it was safer not to play. It’s also difficult for anyone growing up to be different in any way and always contributes to some sort of social anxiety. I’m fortunate enough to have good mates who don’t care if I go on a night out with them and only drink Ribena!
I was put on the transplant list early January 2024 for a pre-emptive kidney and liver transplant. But in April I decided to come off it to give myself time to sit my exams at medical school. I went back on the list in early May and was called a month later.
Waiting for transplant call
The waiting was the hardest part of the whole transplant process. I felt constantly on edge waiting for my phone to ring and by leaving the ringer on all night I seemed to get more spam calls than ever before. I had some horrible 4am wake-ups which resulted in a lot of sleepless nights. In hindsight I wish I had realised that it’s not just one call and if you miss it – that’s it. The transplant team will try you multiple times and any other contacts they have. I also found it very hard that I was effectively waiting for someone else to pass away so I could continue living my life. It was difficult for my family too to see their loved one have to go through the operation and be in hospital.
The key for me was to be distracted and I tried to pack as much as possible into my day. I was also very fortunate that although I was tired and achy a lot of the time, I was still well enough to do some exercise and for me this has always been an escape from the stresses of life.
The hospital told me about the British Liver Trust, and I found the resources available on the website particularly helpful in consolidating and understanding the pre-transplants conversations with the transplant teams.
In early June I was getting up on a nice day and flicking through the news on my phone when I received the call from the transplant team. They said they had a potential donor so to make my way down to the transplant centre.
I was walking just four days after my liver and kidney transplants and very keen to get out of the door and go home.
Once I arrived all my observations bloods were taken to confirm a match with the donor. I then had a roughly 24-hour wait until I received my transplants. I was very fortunate that my best mate had driven me down to the transplant centre, so the wait consisted of a lot of playing uno and cards (all of which he let me win).
After surgery I was in hospital for a total of 10 days – three days on ICU and seven on the transplant ward. Pre-transplant, the thought of being in hospital that long really didn’t appeal to say the least – it’s a bit of a rough time and you don’t feel great. I was however incredibly fortunate that the team at my transplant centre were unbelievable, both medically and on a human level. I was walking just four days after my transplants and very keen to get out of the door and go home.
I am also very lucky that I have a good support network around me. Recovery at home was initially difficult with limited mobility and the need to rest frequently, but you quickly progress. Walking up the hall in the house, then being able to walk around the local park the following week gave me a real sense of achievement.
Pre-transplant I was very fortunate to only be on a non-selective beta blocker for my portal hypertension and no other medications. I am on a great deal more medication now. I used to worry about this pre-transplant, but it soon becomes a new ‘norm’ and you find a routine and structure that works for you. That said, immunosuppressive drugs have impacted my day-to-day living. Initially Tacrolimus resulted in me having a few side effects like anxiety, GI side effects and migraines. As I’ve got used to it and the dose has come down, I don’t experience these anymore, only a slight tremor in my hands.
Being immunocompromised
It’s been a new thing for me to be immunocompromised, but it’s sort of like Covid lockdowns – being very good with hygiene, wearing a mask in public (trying to avoid the public if possible) and meeting friends outside and socially distanced. After the initial months of high immunosuppressants I’m planning on going back to university and a normal life.
Although it’s made considerably better by the amazing transplant teams across the country, having a transplant is a life-changing experience and difficult. I was very much the overthinker in this situation, always jumping to worst case scenarios, so I tried to keep hoping it would work out. This protective mechanism is helpful to a degree, but I wish I’d had a bit more faith back.
The whole transplant thing is an emotional roller coaster and I would say to anyone waiting for a transplant: if there is psychological support at your transplant centre please take it or at least try to decide you don’t want it or need it. Stereotypically, as a young guy, I was fairly closed off to the idea of mental health support and had become slightly numb to everything going on around me as a coping mechanism. However, good psychological input can and has greatly improved my quality of life.
