I've just been told a transplant is likely!

[Shellbear]

Hi, my consultant rang me last night following a biopsy I had done this week. He said that I am being referred to the transplant clinic and that this is likely what is to happen. I'm 34 ans been diagnosed since 2009. My billirubin is climbing and stands at 160, this increases everytime I have bloods done I also have severe itching and some.fatigue. My head is whirling I have a 6 and 7 year old and I worry about the effect all this will have on them. I don't know how long the process takes or how long I'm likely to be on the list for. Has anyone else been through this? Thank you and have a wonderful Christmas x

[hannah1973]

Hi

I imagine this has come as quite a shock and as I have children the same age I understand your reasons for feeling worried. I had a biopsy done 3 weeks ago and get results on 8 Jan, I do feel nervous and there are days (like today) when i feel quite unwell.

My advice would be to take note of the word likely, not great I know but dont reach any conclusions just yet as it isnt definite. I cant give you advice about transplants but i have come across people on this site who can and no doubt they will contact you soon.

Kids are very resiliant I have told mine I have PBC and to be honest they are not interested as hot wheels cars and monster high dolls appear far more important !

Let us know how you get on.

Hannah

[littlemo]

Hi Shellbear I have recently been through transplant assessment. I had to have transplant assessment done at the hospital I attend the liver clinic in in Belfast, had the tests done as an outpatient and took just two days and then had another transplant assessment done in Kings College hospital, London as an inpatient and these were done over 4 days. There was a year in between the transplant tests done in Belfast and the ones done in London, however this was probably as mine were non-urgent as I was being referred for transplant due to intractible itch as opposed to my liver declining which is probably the case with you, with your bilirubin being so high. May I ask how long has it been that high, i.e. 160?. If your liver is deteriorating a lot you will prob be an urgent referral and therefore have the transplant tests (all pretty painless by the way) done pretty quickly as an inpatient. Fear not if you do end up needing to go for transplant I know 4 people whom have had transplants because of PBC and all, am pleased to say, are doing very well and say it has made a huge difference to their quality of life. Best of luck, keep us posted on how you get on. Happy Christmas and hopefully better Health, Happiness and Good Luck be yours in 2013. xoxo

[Shellbear]

Thanks Hannah, I know my kids are the same! Will keep you posted, and I hope you get your situation sorted and that your feeling better.

Hi Littlemo, I didn't realise you have to stay in for some of the tests, I've only just realised that it won't be my normal hospital conducting the transplant should it happen. Just makes things more.complicated with the kids etc. My billirubin started out low 20's and increased to 50 last December, and since then it has just kept rising, 160 was my reading last week. To.be honest I'm not sure how high, high it is, I've tried to look up how high it can go.but.can't.find anything. They tested me for all sorts of other conditions but it seems its just the Pbc that is causing it. I know a lot of good can come from having the transplant but I feel sick at the thought of it. I hope you have a fabulous Christmas and New year and that you manage to sort your itching out. Best wishes Michelle x

[littlemo in reply to Shellbear]

Hi Michelle may I ask what age you are and when were you diagnosed with PBC? Thankfully since stopping the urso in August the itching is not too bad at all hopefully it'll stay that way as due to return to work after Christmas. My worry now though is that my liver does not have the protection that the urso possibly gave it and my bilirubin has started to rise but thankfully it hasn't gone too high went up to 65 but got it rechecked about a week or so later and it was down to 35. Did yours rise and fall or did the bilirubin just keep rising and has it been at 160 for long and did the other liver enzymes rise a lot too? Sorry lot of questions just wondering if I could actually be heading towards the end stages of pbc though am feeling great thank God apart from the fatigue and some joint pains but I can live with that. It was the itch that was always my biggest problem.

[Shellbear in reply to littlemo]

Hi, Im 34 and was diasgnosed march 2009 at the age of 31. My other levels do fluctuate, when I started to take urso my liver functions test levels stabalised then in one appt nearly 2 yrs ago hospital told me I wasnt responding to it any longer, I then did the clinical trial 'PIANO'. At the time my itch was unbearable and i just looked liked a body of scabs and scars where id scratch and bleed. I withdrew from the study so that I could start to take rifapacin to stop the itch and it was fantastic, it took about 2 weeks to kick in but wouldnt be without it now, the only down side is that it can aggrevate the liver. SInce Dec 2011 my billirubin has slowly increased and has never come back down. They cant really inderstand why. I am a bit hit and miss taking my urso but dont think that this can be the cause as last time they checked I wasnt responding and when I was first diagnosed they told me that I could have gone at least another 5 years without medication before any other signs became present. I had blood tests on the 10th of dec which showed the billirubin at 160 and then I had some doen about 8 weeks before that showing a level of around 120. I havent got chirrosis yet, but I think the way they are looking at it is that I am a young woman, who is yellow which they cant get under control, I have a severe itch, and it is highly likely in the future that I will have to have a transplant at some time, so whilst Im young and fit enough to help with the recovery they will do it now. I also think that the rate in which the billirubin is increasing means that Im heading for serious liver damage sooner rather than later. I hope your itch continues to improve as I completely understand how you feel with it. What is the next stage for you in the translplant process? Would be great to keep in touch if you dont mind, if we're going through similar things then would be good to have someone to chat to. Have a great new year Michelle x