Keith PSC News

Keith’s story (from PSC News Issue 50, January 2012)

1974 was a significant year for me.  I married Margaret and I was diagnosed with ulcerative colitis. The two events weren’t connected!

After being quite ill for several months my local hospital managed to get the colitis under control and apart from the occasional flare up I stayed well for the next 20 years. Then in 1994 I began to itch all over. It was awful and sleeping was very difficult if not impossible. My GP thought that I had some sort of allergy but unfortunately he didn’t do a blood test which would have shown that that wasn’t the case. I was eventually referred to my local hospital where following some tests I was operated on. I was told that the bile duct which connected my liver to my intestine had rotted away and this was replaced using a length of my intestine.  About a week later I was told that biopsies taken during the operation had shown that I had got a rare bile duct disease called PSC. Its cause was unknown and there was no cure. I asked what the prognosis was and was told that the disease progressed very slowly and that I’d probably had it for several years without knowing it. It had so far only affected the bile ducts outside my liver but my liver itself was OK. On the one hand I might not have any further trouble from the PSC but on the other hand if the PSC got into my liver I might need a liver transplant in about ten years and it could be anywhere between the two, there was no way of knowing. To my great relief the operation had stopped the itching and I took the view that I would face any future problems from PSC if and when they arose but in the meantime I put it to the back of my mind and got on with my life.

All went well for another seven years until one night in 2002 when the awful itch suddenly returned. My local hospital did several tests before transferring me to the Liver Unit at St James Hospital, Leeds, where I was told that the PSC was now in my liver. Within a few months I started to deteriorate fairly rapidly, I became jaundiced, lost a lot of weight, developed varices in my throat which had to be reinforced and suffered badly from fatigue. I remember saying at the time that I felt more like 94 than 49. By the time that I’d got up in the morning and got washed and shaved etc and had my breakfast I was tired out and could easily have gone back to bed but I didn’t as I was determined to carry on for as long as possible. I was told that all that could be done for me was a liver transplant and after a four day assessment to determine my suitability I was put on the transplant waiting list. Although I was fully aware of the risks involved I viewed a transplant as a chance to get a new life and I received the gift of a new liver on 20th Oct 2003 after a three month wait. I was later told that I’d have only lived a few more months without a transplant. I was soon in far better health than I’d been before the transplant and that has remained the case. I have since been fortunate to travel extensively in Europe and beyond and to see the arrival of my first grandchild, Emily, who I wouldn’t have lived to see without my transplant. I’ll always be grateful to my donor and her family and to the brilliant staff at St James Hospital for the new life that I’ve been given.

I first got involved with PSC Support in 2007 when Margaret and I attended the Oxford meeting. Hearing the latest news on PSC research etc from Dr Chapman was very interesting but the part that I enjoyed the most was meeting with other PSCers and their families. Since then we’ve attended all the Oxford and Birmingham meetings which we’ve found to be very worthwhile. When PSC Support asked for new volunteers I offered myself as a Treasurer as I’d had previous experience of working in a Building Society and I also had been the Treasurer of my church for 23 years. In addition I volunteered to be one of the contacts on the PSC Support helplines. I hope that I’ll be able contribute towards the efficient running of PSC Support and also to help dispel the commonly held opinion that, for the few that will need it, a liver transplant is something to be dreaded. Instead I say it should be looked at as a gateway to a new and far better life.

Keith

10th Anniversary of Keith's Life Saving Transplant (20 October 2013)