James' Liver Transplant Story
James, who at the time of writing is ten-weeks post transpant has shared his story with us for Organ Donation Week.
I am so thankful to be alive and to be free from PSC. The love and gratitude I have for my donor and their grieving family are incredible. I may never meet them but their decisions have given me hope for the future and the chance to see my kids grow up. PSC may have dictated the last few years of my life but it's not the boss any more and life is waiting for me!
In the beginning...
Like all good stories this one starts at 4:15am on the toilet of a gastroenterology ward. I had been on the ward at the John Radcliffe hospital (JR) in Oxford for 5 days after my bilirubin level had shot up to 400+ the previous week. It was early June 2022 and one of the nurses knocked on the toilet door to check if it was me in there. Hmmm, that's odd. No one's ever checked on me in the loo before. Something's going on! Sure enough, while I had been sleeping, the ward had received "the call" and it was time for me to go to the Royal Free (RF) for a transplant.
You may not have come across it but, fresh on the heels of my 2019 near miss with the transplant waiting list, there was a global pandemic. I will forever be grateful to have been well throughout the worst of covid and it is horrific knowing that a number of patients didn't make it while liver transplants were paused.
It was not until Dec 2021 that PSC decided to mess with me again and over Christmas the tiredness and the yellowness began to return.
At the end of February I had a couple of days at the RF for transplant assessment and was added to the waiting list early in March.
For the next three months I got more and more jaundiced and fatigued. My wife and I struggled with all the emotion and uncertainty of life on the waiting list.
One of the challenges for us was working out how much we did and didn't explain to the kids (aged 5, 8 and 10 when I went on the list). My wife made "Transplant Teddies" for them where each soft toy had one body part that had been transplanted from another soft toy. At times the teddies accompanied them to school where the staff were great and made provisions for them for when things seemed too much. It is so hard to see you kids struggle and not be able to bring them any certainty about what is ahead but we all held on to the hope of better days after a transplant. And then in June I wind up in the JR and we have the interrupted 4:15am toilet visit and we enter the finishing straight of this race to a transplant...
I have been ill prepared for many things in my life. For the first 2 months that I was on the list my hospital bag (that you need to have ready to go for when you get "the call") contained little more than pants and a puzzle book. However, I have never felt as unready for anything as I did when I heard they had a liver for me. Maybe nothing can really prepare you for that moment. I was shocked and nervous. I realised that from here on in I had no real control- I just had to show up and then put my trust in the various medical professionals and see what happened.
A taxi took me from the JR to the RF with a 10 minute stop at home to say goodbye to my wife and kids. There were lots of tears and we prayed together and then off I went. I cried in the taxi listening to my music. I cried in the hospital while I frantically wrote letters to each of the kids in case the worst happened.
And later I cried as I learned that the operation was not going to go ahead.
I had tested positive for covid and they decided not to operate. I wasn't taken off the waiting list but I was deactivated until I was clear of covid. It was a strange mix of relief that I wasn't about to be taken to theatre for a major operation and sadness that I knew it still had to happen and that I was still so ill. Given I had had "the call" I must have been amongst the least well people on the list and I began to feel the fear of not getting another call and the PSC beating me.
I came home and had a week of frequent PCR tests waiting for a negative result so I could be reactivated on the waiting list. Two days after I was put back on the list, my phone rang at 1am. Pretty sure I know who that will be! We woke the kids up and they were all excited this time- this was going to be when daddy gets better. We pray and then off I go again with hospital transport taking me back to the RF. Sadly this would also not be my day for a transplant. While I was saying goodbye to my family, a patient with a really urgent need for a transplant was being added to the list. Such was their need that the transplant coordinators wanted them to get the donor liver instead of me. While I had no say in it, when I was told, I thoroughly agreed with the team's decision. It was the right call but I later sob with my wife- "I thought it was my liver".
At 1.30am one morning in July, I got my 3rd call.
Life After Transplant
This time there was no joy or excitement from the kids. I think two false starts meant that they were braced for being disappointed again. But this time everything went to plan. No covid, no urgent need from someone else, the liver looked good and we were all systems go! At 11am the transplant coordinator walked me down to the theatre and I made myself comfortable on the nice, warm bed provided. It seemed wise for me not to witness what was about to happen and so, with the anaesthetist's help, I decided to have a little sleep. The operation went well and the next 2.5 weeks were spent at the hospital before I was allowed to go home. Everyone has a different experience after transplant and, while mine wasn't plain sailing, I was generally amazed at how quickly I stopped being jaundiced, I could start walking and I started to feel better. While my wife had been able to see me once I was out of ICU, I hadn't seen the kids since I left. The joy and excitement that was missing when I left home, was there in abundance when I returned. It was a truly brilliant day!
As I write this I am 10 weeks post transplant. So far I have been incredibly fortunate to have had a fairly smooth start to recovery. I am desperate to start running or swimming again and determined to get myself fit enough to compete at next year's Transplant Games.
Recovery is slow and frustrating at times but I am so thankful to be alive and to be free from PSC. The love and gratitude I have for my donor and their grieving family are incredible. I may never meet them but their decisions have given me hope for the future and the chance to see my kids grow up. PSC may have dictated the last few years of my life but it's not the boss any more and life is waiting for me!
James, September 2022
Thank you to James for sharing his transplant story with us for Organ Donation Week 2022.
Update: James celebrated his one year Liverversary in July 2023 at The Royal Free. Click here to hear about his experience one year post transplant.