Many thanks to Peter for sharing his PSC Story with us. Incredibly, he had his liver transplant on his birthday! One year later, his wife organised a surprise 46th birthday/transplant anniversary party, and party guests donated to PSC Support in lieu of birthday presents. Peter's friends and family raised £400 to help people affected by PSC.
I am a 46 year old happily married man and father to my nine year old son. I work as a Chemist in Ninewells Hospital in Dundee.
I was nearly 33 and unaware I had a serious liver condition. When I went to my doctor in 2003 with itchy skin I was convinced I had a dermatitis flare up. On referral to dermatology, blood samples diagnosed my PSC. To be honest, at that point I was in denial.
‘There is nothing wrong with me’, I thought, ‘This is an over-reaction’.
The specialist I saw soon after described my condition, that the bile ducts and capillaries in my liver could become scarred and blocked and cause further damage to my liver.
I thought, ‘These are things that happen to other people. I’m fine it won’t affect me’.
The doctor told me the condition may lie dormant but if it did get worse there were medications that could be used to treat it.
Over the intervening years there was the odd issue here and there that I can now attribute to my PSC: general tiredness, the occasional uncontrollable shivers. Blood tests showed that my bilirubin levels were often above normal levels. However, it wasn’t until April 2015, that things came to a head. I became jaundiced, even more tired than normal (I was even falling asleep during meetings at work), my abdomen was swollen and I was losing my appetite. Again, I went to my GP and was immediately told to get to hospital. I was admitted at the beginning of May for investigations and an ERCP was performed to try to unblock the bile ducts. After a week or two it was evident this had not helped. My bilirubin was now over 300.
Another ERCP was carried out but this too did not help. The main bile duct was blocked and the damage caused behind this was irreparable.
I was in liver failure and transplant was my only hope.
I was transferred for transplant assessment. Fortunately, I was approved for the transplant list and ‘top banded’ as my condition was so serious. There were complications to follow, as my temperature spiking led the specialists to believe that I had an infection that may affect a transplant. It took a month of tests before they ruled that out, putting it down to my rapidly deteriorating liver, a bilirubin level over 600, and my lack of eating.
I was fully approved for transplant and was extremely fortunate to receive my liver on my birthday in the July.
The operation went well. I faced a lengthy recovery not only from the transplant but from the near three months spent in hospital and the seriousness of my illness prior. I had lost 4 stone and a lot of my muscle mass. However, I was determined to make the most of the amazing gift I had been given. I have fought my way back to good health.
I returned to work just 3 months after release from hospital and was back full time 2 months later. I built up my fitness by going to my local gym, getting involved with my son’s football team and doing my SFA coaching badges.
In July 2016, as the 1 year anniversary of my transplant approached, my wife was secretly planning a surprise birthday/transplant anniversary party. On the day I was amazed to see all our friends and family turn out to celebrate the day with me. The highlight was the liver shaped birthday cake with a Number 1 candle in it, although it was a bit strange cutting it up and passing out slices of my liver!
I should add here that my transplant does not free me from the spectre of PSC. It could return to haunt my new liver. Nor is it the best solution. I live now under constant immunosuppression with a cocktail of medication fighting of potential rejection issues while leaving me open to all sorts of routine illnesses and infections others can easily fight off.
So the fight to find a cure is still important to me.
In lieu of gifts, my wife had asked if donation could be left for a liver charity. By adding a little something ourselves we have brought the total to £400 and have decided that PSC Support would be the charity to receive it. As incredibly lucky and thankful I am to the Donor / their family /Organ Transplant Service, I feel it is very important that rare diseases like PSC get a share of the funding. If a cure for this disease can be found it spare others from the suffering my family and I experienced. That would also reduce the need for transplants.
This Summer I will be taking part in the British Transplant Games in North Lanarkshire.
We are very grateful to Peter's generous family and friends for their donations to PSC Support, and to Peter for allowing is to share his story. We wish Peter the very best of luck in the Transplant Games this year!
If you'd like to tell us your story, whatever stage your PSC is at, we'd love to hear from you.