Hi all

Hello. My name's Raj - I'm 29 years old and live in London. I have UC (since 2006) and PSC (since 2008). I was transplanted in July 2015, and doing well 6 months on.

Whilst I found UC difficult to understand at first, it soon became part of my life. The symptoms during a flare up are hard to ignore. However I didn't have any signs of PSC until 2012 (fours years after diagnosis). It was picked up from blood tests and a biopsy. So I chose to ignore, hoping it would go away and tried to lead a 'normal' active life.

Then at the start of 2015 I started becoming very unwell - swollen ankles, ascites, jaundice, etc. When I was told I needed a transplant, I rejected it - I was scared. How on earth did it come to this? What would happen to me? I would have rather died than live a less than perfect life. Several doctors, nurses, family members and other patients finally convinced to me, reluctantly, agree to be listed.

Then two months later I got the call... Still not completely convinced, I lay on the surgery table, and as the many people around me, smiled and did things around and on me, I fell asleep.

I woke to be told the surgery was cancelled just before I was to be cut open - the donor was found to have cancer in another part of their body. Over the following days I lay in pain - my body struggling to heal from the many lines put in, my mind struggling to come to terms with all the emotions involved and my spirit broken. Over the following weeks, I struggled to eat and exercise. I became more and more unwell, until I was in intensive care, with daily multiple blood transfusions, on dialysis and being told I may be too unwell for a transplant. The symptoms were much harder to deal with now - loss of vision in low light, anxiety, delusion, struggling to get up on my own, etc.

However, the doctors and nurses fought hard (thanks to the Royal Free, London) and managed to find and stop some internal bleeding and with not long left a second match was found... I had the transplant and am now doing well - I am playing sports, eating well, back to a good weight and thankfully have normal LFTs.

Looking back on 2015 I am actually glad to have gone through that experience - I am a much more relaxed and genuine person and my life is full of potential rather than the limitations I first imagined. It is unfortunate I had to learn things the hard way. My view on transplant now - it is magical, miraculous and amazing. I met some incredible people, and am connected to others in ways that are hard to describe - the donor, their family and recipients of the the donor's other organs.

Mindful, went through the ringer, and touched on one of my greatest fears-of when the time comes for a transplant, that I will not be a viable candidate for health reasons.

There were some recent heartbreaking posts here from the wife whose husband was in that position. It is difficult to read her posts without shedding many tears.

You also touched on a theme that we psc-ers deal with-denial of psc versus acceptance of it while living life the best we can. We all deal with that dilemma the best we can.

I am glad you're alive and kicking. Thank for sharing.



Thank you so much for sharing. My husband and I have a similar "problem". We tend not to deal with it until he has problems. I shouldn't necessarily say we don't deal with it, we just don't really acknowledge it, though we do stay on top of his symptoms-call MD for blood work order as soon as we feel he isn't doing very well.

It is such a scary thing. You do want to just pretend it doesn't exist and live a "normal" life. I know things are going to get worse, I pray every day it will be later rather than sooner.

Thank you for sharing. Amongst such a terrible disease and such heartbreaking posts it is nice to read a positive. Also so glad to hear you are doing well. Pray for continued health!!! :)