"Many members are in the early stages of PSC, some perhaps in more advanced stages but whatever your situation be not too alarmed! Apprehension and fear of the unknown play havoc with us all.
I lived with PSC for many years and was only diagnosed in my fifties when I was referred to the, now retired, eminent Gastroenterologist, Prof. Elwyn Elias, who knew almost immediately what my problem was. Some twelve years later, it became obvious that I would need a transplant as my health was deteriorating.
I am now five years post transplant! Everyday I wonder at the miracle of my extended life, two birthdays every year now.
Each year you become stronger, a gradual progress of recovery because the body takes a while to build back to its original strength, two years and I seemed back to normal, six weeks and you feel able to drive and kick start your life again, depending on your situation.
I feel extremely well now, touch wood as always, thanks to my Donor and his family, my family, and all the medics at the QE in the Liver Unit at Birmingham, who looked after me so well, and still do. I was fortunate that the operation went to plan, no complications, and a baby's life was saved too, a wonderful bonus! My three Daughters and five Grandchildren are a joy and I can help to support them all. I keep fit walking, enjoy hobbies, holidays, socialising and all the good things in life and have plenty of energy, something I lacked when suffering with fatigue.
I try not to complain about taking anti-rejection medication as without this I would not be alive now The body does eventually accept the change. Hopefully with the research that is taking place now it won't be too long before they will find another way of treating the disease. Professor Adams and his team are doing a wonderful job and it is so good to see he has agreed to become a Trustee of PSC Support. I am personally very fortunate to be treated by him. I try to avoid the risk of picking up infections, particularly mixing with young children. Blood tests and hospital visits are routine.
My diet is fairly normal, smaller portions and regular meal times seem to suit me but I find spicy and fibrous foods sometimes don't agree with me. I am tea-total by choice as I respect my new liver and try to take care of such a precious gift. I was not aware that crab sandwiches are a no-no; never mind I am sure I can live without them. Too much sun is not a problem as I decided not to travel to faraway places, I like to feel I am in reach of medical help, if needed and we rarely seem to have hot weather here. So far I am pleased to say there is no sign of a return of PSC.
I now realise I felt ill on and off for many years but put up with it, not realising I had a chronic liver disease. At least there is more information and help for sufferers now, and hopefully a cure sometime in the not too distant future. Whilst chugging down the river Avon on a narrow boat trip I met my original Consultant who treated me for ulcerative colitis in my twenties and who said one day I would have liver problems. How right he was and how strange it was to meet him after so many years!
I do hope this article helps to dispel some of the worries and fears people feel when contemplating their future with PSC
I must admit it is a very traumatic time for everybody concerned but there is light at the end of the tunnel. Perhaps it makes a better person of you, life is never easy at times as I think we all agree and that we should never take things for granted, especially our health."