Hi has anyone had a living liver donor transplant?
My daughter has put in all relevant paper work to co-ordinator but still we await a reply,was tld that the whole process takes 3 months but already a month has gone by.
Hearing that in the U.K. they have on occasion done some transplants this way but are not overly keen where as in many countries abroad they do them all the time.
Hello evelyn1.
I don't want to dash anyone's hopes and as times move on it might not be right information anymore but I did read some time ago that these living liver donation transplants aren't actually something to consider if one has something like PBC.
I am in the UK and it seems the norm for anyone who gets bad with PBC to have an actual liver transplant the standard way.
I think in a way thinking about it, if we have PBC we are said to always have PBC. Even after liver transplants there is no guarantee that PBC won't return and I can't help but wonder if these quite new living liver transplants would be the thing in PBC because aren't we then supposed to grow our own liver from this transplant.
I'd be very interested in finding out more about this subject and if I did actually read it all as I have put it.
Hi liver specialists have said they would consider my daughter just seems to be a hold up to get things moving.
know that pbc can return in a new liver.
this waiting game is a nightmare & drives me crazy at times x
Hello again evelyn1.
I have just having a look on the net to see if I could find anything further with regards to your posting. Have been looking on British Organ Donation website, NHS and also NICE but cannot find anything now regarding live donations and PBC. Auto-immune is mentioned the reason for transplant, PBC being in this category.
Good to read that your daughter is being considered as it seems that you have up-to-date information.
Can understand the frustration of waiting just to find something out. I found it bad enough back in 2010 when I first went to the GP early March with the itch and it took until Dec that year for a doctor to say I'd PBC. I only went through a simple scan and then more bloods to be informed this. I often think it could have been found out much sooner.
Hi peridot think you are wrong on this one also think you have to be a careful what you say to people when they are obviously at a very difficult time. Luckily Evelyn already knew it was a possibility but you could have caused a lot of destress!
Yesd I do understand cazer and was careful as to how I responded.
I was being honest in that some time back I did read something about what I did respond with as at the same time I myself would like to have some heads up on anything that might be out there if I eventually become in need.
As much as the internet can be full of amazing facts and honesty it can also be the opposite.
As I stated originally, what I read, things move forward and what might not necessarily have been feasible previously might be so now.
My own sister encountered a brain haemorrhage late 2013 and she has been lucky that due to new advances in brain surgery since the early 1990s she survived 3 operations and is continuing to make good progress. unfortunately in 1987 when our mother suffered one the surgery was not here and she died. Things do seem to move forward at a pace at times that occasionally unless someone brings to your attention or you hold an interest it can pass one by.
Understand that you want to gain/give as much onfo as possible but in a difficult position like this it is probably better to check first if you are v. Unsure of things.not trying to criticize just don't think youve thought it through ...as Robert says we have to be careful what we say to people.
Yep- my favourite topic.
Please be sure to either state your sources or be honest enough to state that what you are saying is opinion.
Many thanks,
Robert.
Hi robert cazer here.was this directed to peridot?as I was trying to be v.careful about what I said?
Sorry, Cazer.
It wasn't particularly directed to anyone specifically but it was to reinforce your point.
What we say here has a huge potential effect so I was agreeing with you.
Thanks Robert . Although I don't know Evelyn personally I suppose I was being a little defensive of hrr situation as she's been so poorly whilst she been waiting on the transplant list and weve chatted quite a bit. ..so when people make of hand comments that could have really bad effect s on others I got annoyed.should have kept my cool but it also happened to me a few weeks back but only over minor details so i ignored it ...but not thos time. Thanks
Hi Evelyn. I'm a new member to the "PBC club" so still gathering all the information I can at the moment. However this has indeed happened and I read about it on this site. I have not yet mastered how to copy a previous post but if you Google "daughter donates liver to mother PBC" you will find it. 4th story down & a lovely one too. Best of luck!
Hi Evelyn cazer again...when I went to pbc clinic in Birmingham there was a lady who had pbc shes on the waiting list and has one false alarm. She saw the consultant and he said to her..do you know anyone who fancies giving you a piece of their liver.from the wsy she told us it was said quite light heartedly but im dam sure he would not have said it if it wasn't a serious proposition. Unfortunately sometimes people say things on this site that are not correct whivh could be quite upsetting. I'm sure you're frustration must be immense so just had on in there.which hosp did you say you were under and where are you on the list?
Hi, Evelyn1.
First off, I bid you well in your journey. If we can help at all, give us a call. If you are out of UK, we can call you or skype, etc, if needs be.
There are some live donor transplants in the UK. As a country, we have not yet gained that critical mass which would bolster numbers. One of the difficulties is that a transplant unit needs to learn the craft of this difficult procedure.
Another feature is the Hippocratic Oath which says, "First, do no harm." Taking part of someone's liver doesn't always fit with some Drs' view.
This is very much from memory so I won't throw a number in- but once a unit has carried out this procedure X amount of times, safety records, etc improve drastically.
I know the transplant unit in Leeds has been working hard and we'll on its living donor programme for all I don't know where they are currently.
Once upon a time, liver transplant was a risky procedure. Whilst it still has its risks, it is much safer now than ever and is now considered a "routine operation". Maybe, in time, living donor transplants will become the same.
Meantime, if we can be of any help- even if just helping with the frustration, etc then please get. In touch.
Yours,
Robert.
Denied Disability
Fluctuating AMA- AMA M2 (pre Pbc - not on meds)
Raising Awareness for Primary Biliary Cirrhosis
Causes of PBC
Cause of PBC
