I wandered back up to the hospital on Tuesday 15 November for the first day of the second part of my assessment. I didn’t have a lot of information about what would be happening, mainly because I didn’t know if any further investigations were needed as indicated by all the tests that happened on the first part of my transplant assessment.
I got there at 9am again and Joe had a coffee and scone – this seems to be quickly becoming a tradition. At 9:30am we made our way back to to the transplant assessment area where we met a different transplant coordinator to last time. I can’t remember her name but she was a lovely as Ann. In fact, my experiences with this person and Ann have shown me that I don’t need to worry about contacting them with anything. They all seem lovely.
This part of the assessment also had two other people undergoing it at the same time as me, but they were different people to who I had been through the first part with. Joe and I sat down with them and got chatting. They were all lovely people.
The coordinator explained the order of the day. She was going to do some transplant education with us and then we would meet the surgeon. Then, following lunch, we would meet with a consultant hepatologist. The point of these interviews were to allow the consultants to get any information they needed from us and then to give their professional opinion as to whether we should go ahead with putting me on the list.
All of the information would be taken to a transplant group meeting and discussed and then the whole team would come to a conclusion as to whether to add me to the list or not and if so where on the list I should be placed.
The transplant education was really interesting. I am happy that I have the mental ability to distance myself from pretty much anything as some of the information was very frank and scary. Lots of talk about what actually happens in the surgery and possible side effects.
It was good to have someone to talk to who had obviously taken a lot of patients through the process from beginning to end.
After this I went in to see the surgeon. This is where it all started to get interesting for me. The surgeon said that he did not think that currently I was a candidate for transplant. It was his opinion that it was too soon to be considering me for this.
He mentioned my UKELD score, which is a calculation they do on some blood test results. You can be added to the transplant list when your score is above 49. Mine was currently 44. It is possible to be added to the list with a score lower than 49, but this has to be fought for by various people. The surgeon explained that a score of 44 was fairly normal for any adult.
I asked him about my results from when I was first referred, he said that my UKELD then was well above 49 – I believe he said it was 56. To put that in some perspective, the boundary to be placed on the higher priority list is 54. It was commented that if my last two blood tests didn’t have my name on them he wouldn’t believe they were from the same person.
I left the meeting with the surgeon with him stating that he wasn’t going to vote yes to having me put on the list.
I went for lunch after this and talked through everything with Joe. I felt very odd having been very ill for 4–5 months of this year and having been told by multiple doctors that I needed a new liver that all of a sudden now I didn’t.
Joe and I agreed that no matter what happened we would try to see this as a positive.
After food (which I got a voucher for – wooo!) we went back up to the transplant assessment area and waited to see the consultant hepatologist. Luckily this was going to be the wonderful Dr Ferguson. The surgeon had told us that Dr Ferguson and him sometimes disagree on when to add people to the list, so I was interested to see what he would say.
Dr Ferguson agreed with the surgeon. It seems that I have recovered to such an extent that at the moment the risks of a liver transplant do not outweigh the benefits for me. Although it was pointed out that I still have advanced PSC and my liver has been damaged. It is now a question of when, not if, I get added to the list.
He did admit that this does leave me in a limbo state as I do have some symptoms and will continue to have them but I am not ill enough to get the one treatment. I went through what I was experiencing with him and unfortunately there is nothing they can do about the pain I feel (which is fairly constant now) or about the tiredness. I just need to deal with these myself.
He did say that as I have recovered that I am able to do as much work as I feel I can. I am looking forward to getting back to work, maybe working part time and seeing how many hours I can cope with without just falling asleep.
The way he explained what had happened to me was that in an autoimmune disease the immune system does not attack constantly. Something – no one knows what – triggers an attack and then something else – again, no one knows – tells the immune system to stop. While my liver was being attacked I got really ill. Now that it has stopped I am weaker than I was before it all happened but the worst of it is over.
The way I like to think of it is as if it were a tidal process. When the waves come in, I am very ill and damage is being done. When the tides go out I am left worse for wear but better overall.
I now just get to wait for the next wave, which could come tomorrow or in 10 years time. I just have to wait and see.
It was agreed that I should finish the assessment and come back for the final day on Wednesday. This would mean that if I got ill again within the next 6 months I wouldn’t have to go through the process again.
So, Joe and I went home that night knowing for certain that I wasn’t going to be added to the list. A lot of information was swimming around in my head which was causing a lot of mixed feelings. In some ways I felt upset, in others I felt happy. Mainly though, I felt tired. So home to sleep it was.