Annette's story

I had a liver transplant five weeks ago (at the time of writing), everything went well and I feel great. In this article I want to share my experience, especially concerning the decision to have a transplant and the timing of it.

I had been diagnosed with PSC (and UC) three years ago, after increasingly frequent episodes of unbearable itching.  In the first year, these symptoms were relieved by taking URSO alone. In the second year, I needed a stent to keep my common bile duct open, which meant regular ERCPs every three months to change them when they blocked up.  Other than these procedures I could carry on as normal.

However, from last summer onwards, these stents did not seem to work anymore, and I felt generally bad, without energy, general itching and with worsening blood results. We suspected that my PSC had now affected the small bile ducts within the liver.

I was then referred to a hepatologist who, at the same time, heads the transplant programme at the Royal Free Hospital in London. Without doing further tests, he asked me to start thinking about a transplant.  My first reaction was against it ~ No, I'm not that bad yet!  I felt pressurised into something I did not think I needed yet.  He asked me to keep a diary over the next two months, to note down how my quality of life was day by day, as you have to weigh the dangers / inconveniences of a transplant against the benefits ~ very good advice to someone slowly getting used to the thought.

In October last year I had an MRCP which showed a strange thickening of the walls around the common bile duct, no explanation for it, but possibly a sign of cholangiocarcionoma?  Or just the reaction to another ERCP ~ I had to remove the latest stent. I had to wait another six weeks for the scan to be repeated, but there was no change, it was inconclusive.

From November onwards, I was really jaundiced and fatigued.  Making it worse was a move of the whole family to Switzerland at that time for my husband's work (I did most of the move as my husband was already working away in Switzerland).  Luckily I found a very good hospital there straight away with a special liver and transplant unit.  Over Christmas I had an extremely painful gallbladder infection, and actually spent New Year's Eve in the A & E department of that hospital.

By then I had to accept that my condition was serious, and I was on the Swiss transplant list in January.  My doctor convinced me that it was better to have a transplant sooner than later (as I am still youngish, early 40s).  No other organs were affected yet, and the better the overall condition I was in, the faster I would recover from and cope with the transplant.

However, Switzerland is a small country with an even lower rate of organ donors than the UK. I might have had to wait half a year at best, more likely one or one and a half years, as opposed to three to six months in the UK.  On the other hand, I could not imagine leaving my husband and two young children alone in a still strange country for the likely five to six months I would need to spend in London if I went on the UK transplant list instead.

The decisive point came soon afterwards when a Swiss friend of mine, suffering from PBC, deteriorated very quickly from mildly jaundiced to unconsciousness in intensive care, within three months, with only a few days left to live.  Yet even in this urgent case, no donor liver could be found for her (at the last minute she was saved by her daughter donating half her liver ~ both are doing fine now).  That shocking episode made it very clear. I could not risk getting into a similar situation as I have no suitable life donor in my family, and I wanted a transplant as soon as I could, even if it meant being separated from my family for half a year.  So I went back to London, underwent all the necessary tests again, and was on the list and waiting here since the beginning of April.

During this waiting time I concentrated on feeling positive and keeping myself as fit and healthy as I could by frequent walks in the park, resting enough and eating as well as I could  ~ although I had no appetite and nothing tasted good anymore.  In a way, being removed from family obligations actually allowed me to build myself up again.  But after two  months of waiting I was becoming restless, wondering how long it would take. The family back home was not coping well without me, and the constant itching and hence disturbed sleep really tested my endurance. Luckily I did not have to wait that much longer and received the long-awaited phone call from the hospital on 10th June, two and a half months after going on the list.

The operation went well and I recovered quite quickly.  The two months preparation definitely helped.  Within days ,my eyes regained their normal colour, I felt fine except for some pain and, best of all, I had a new chance in life, and no more itching !  But there was further, and this time, not such good news.  At the post-transplant examination, the pathologist found cancer in some small bile ducts within my old liver, also affecting two lymph nodes that had been taken out during the operation. Luckily, this had not been apparent before or during the operation, otherwise they would not have given me a new liver.  And there was no carcinoma around the main bile duct, despite earlier suspicions.

Of course, this news was shocking !  Then I realised how lucky I had been in so many ways ~ that I had got a new liver at all, that the old cancerous one had been removed, that I did not have to wait very long for it, and that I had made the decision to come back to the UK in the first place (without knowing about the cancer).

Had I delayed and waited, the cancer would probably have slipped into the lymph system, but I take it as just another and, hopefully, the last hurdle towards a new life.  I’m staying positive, and think about my family and my future. 

The new liver will need life-long careful management (I’ve overcome a stubborn case of rejection already), but this is so much better than the state I was in before.

Luckily, most people with PSC won’t require a transplant.  If you do, my advice is ~ Don’t delay getting on the list, and don’t let your body deteriorate until it is in a weak state.

Get a new lease of life while you can !

Annette