Hi - so when my sister found out about my PBC she wanted to see if she was a donor match for when that time came. She called me up and asked me about my blood type and the next day she went for her apt with her dr. He said she'll be tested if / when that time comes and not to worry about it, and he told her a transplant was a last resort and according to her was lax about it all.
This frustrates me because a) he doesn't know me and doesn't anything about MY PBC (my stage, symptoms etc)... (regardless of what the books say in med school) and I'm mad that he told her to get tested at the time.
If my sister knew NOW that she was a match, she would have to quite drinking (she's a HEAVY drinker) so her liver could have time to regenerate so she'd be a suitable donor when my time comes. But because he told her to get tested "at the time" it won't matter if she's a match because her liver will be so damaged from drinking it won't have time to regenerate before I need it and she won't be a suitable candidate for a donor.
Sweet of her to get tested - she thought if she was a match she could donate now and I'd be rid of PBC. her intentions were good. But I'm frustrated with her doctor's reaction.
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Becca75
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There is a living donor program available for liver transplantation. I'm not sure if it is considered for PBC patients or not, however. The entire diseased liver is removed and replaced with a portion of liver from living donor. Over time, both livers regenerate and grow to normal size. Unbelievable what can be done now!!!
I would think it may need to be a fairly advanced case before they would consider transplant. Also, some have developed PBC again after transplant so not a guaranteed cure.
yes you have to be in end stage failure to be transplanted. That's why I'm upset that he didn't at least see if she's a match - she needs to quit drinking and let her liver regenerate itself before she can ever donate it.
Actually that's not true. Your liver regenerates, like a lizards tail. You do not have to donate your whole liver just a piece of it, and you both would be fine.
Unlike most problems with the liver when a transplant is needed the whole liver is required. A part of another persons liver is no good as they have to have passed away! My brother thought he could donate part of his but this is not possible.
they would take out my entire liver and transplant it with a 1/2 of a living person's liver. it will regenerate as it's the only organ that will do that.
Actually that's false. You have to be a match, not only blood but antibodies, antigens etc. it's much more complex than just swapping the same blood. Your tissue has to match. But if you're a match they would take your brothers healthy liver resect a portion of the liver and take out your bad liver and put in the resected portion. Both pieces would regenerate to a normal size liver. Now I do know that you also have a counselor when the time comes who asks a series of questions to the donor. The donor can tell them in total confidentiality if they truly want to give the organ or not. If they say no then they come up with a reason to tell the patient in need. Idk what happened with your brother but whoever told him that was not speaking the truth, at least someone was not telling the truth.
Becca75 is correct, a living donor can donate part of their liver. From what I've read though it seems this is rarely done for adults, mainly as a last resort. The difficulties arise because they have to take a part of the liver with some vessels to ' plumb' it in. This means if the donor liver would have to be more than 60% removed (it could be less than this I can't remember), to include these vessels then they wouldn't do it. It has so many more risks, to both parties that unless you were on the super urgent list without hope of a donor they might consider it.
If you look on the British liver trust site I think they have info about it on there.
Are you at a stage that you need to be thinking about transplant options?? There are many members on this site that have had PBC for 20+ years with no major progression? PBC is not cured by transplant, and some of the debilitating symptoms such as fatigue are due to the AMA, which affects energy production in the cells to the muscles. ( its much more complicated than that involving cell biological stuff which is beyond me). Anyway my point being transplant is a last resort if the liver becomes too damaged to carry out its important functions (I'm sure you know this, not wishing to sound patronising, but for anyone else reading who doesn't know). End stage symptoms can be asites, varacies, HE, jaundice, etc. The minimum UKELD score to be considered for transplant is 49.
Also maybe it would be good if you try to encourage your sister to reduce her drinking anyway, we know how horrid liver disease is, so anything to avoid that makes sense. Women are much more susceptible to alcohol related liver problems due to there size etc. Men tend to get away with it for longer.
Hi - No I'm not there yet at all. But I like to have information about everything....
I talked to my specialist today and she said that yes a living donor can be used - and most likely will be used. It was great to talk to her about that.
So just to add my little bit of non-medical knowledge on this topic. Not all of the above is correct. Living donors can donate part of their liver (if it's determined they are a suitable donor). A whole liver is not needed. Both parts of the liver, in the donor and recipient, grow and regenerate after the transplant to almost normal size again. However, not every country in the world operates a living donor programme. I live in Ireland & have already discussed this with my specialist (because my beautiful daughter offered me part of hers after I was diagnosed...). Unfortunately such a programme is not available here. I do know there is one in the UK & though I don't know for sure I'm guessing there is one in the US also. And there is one other organ that I'm aware of that living donors can donate and that's the kidney (obviously only one - can't give away both! 😉) Also correct that transplant will not cure PBC. PBC will start doing its thing again on the new liver but, with a bit of luck the recipient could get another 20 years out of it. Having said that I think but am not positive one of our members here has had 2 transplants. So everyone & every case is different. We all need to discuss with our own specialists in our own countries.
I agree... and yes only 1/2 the liver is needed. it's the only organ that will regenerate - amazing!
For me it's good to have the knowledge (looking ahead) in case any of this becomes a reality. so many cases are so different - it's all so individual that being prepared helps to relax me
Hi Becca, I think that's a really good point - that being prepared and having knowledge of possible outcomes helps a lot!
You can multiply that by 3. In my profession it is called risk management - dealing with bad things that might happen - and there's 3 ways to do it: prevention, detection, and response. Prevention is stopping bad things before they ever happen, like locking your doors to prevent a robbery. Detection is catching it quickly when bad things happen so you can deal with it before it gets worse, like having an alarm system to let you know if someone breaks in. Response is doing stuff to repair the damage after it happens, like buying an insurance policy to replace your stuff in the event that it gets stolen.
Its good to have a balance between all the methods. Prevention only is impossible and can lead to anxiety and excessive worry because the goal is to never have anything bad happen ever. Response only can take a lot of energy to constantly deal with one problem after another, and there's not always a way to undo the damage.
I guess with PBC, we use prevention by staying healthy and taking Urso (if possible) to slow the progression of the disease. We use detection by monitoring bloodwork and doing imaging to check on liver function and possible levels of damage. And we develop response plans for if/when things go south like bile duct stents, transplants, etc. Those plans need to be flexible, though, because we can't predict the future. Its important to trust that when the time comes, we will be resourceful and make the best decisions we can at the time.
Yes as I said part of the liver is used, but the vessels have to be in the correct place to ensure it can be plumbed to the tranplantees main vessels. So it is dependant upon where these vessels are sited in the donor liver as to how much of it they need to take. As such there is a cut off point of the amount of donor liver they can take, i seem to remeber it less than 60%. The liver is cut into two pieces, so bleeding is a very high risk. Yes the organs grow back. This is still fairly new and not all transplant surgeons in the UK will/ can do this. As I said the British liver trust site has info about it, they ran a story a while ago about a man with PSC, whose son offered to be a living donor but his liver was not suitable due to the vessel placement, so his other son was suitable and the operation was successfully done. The procedure is more invasive and risky than kidney donation, because of the bleeding risk etc.
When I joined the PBC foundation 10 years ago, the info pack they sent quoted that 1/3rd of people will develop PBC in the new liver. This stat is probably because PBC tends to be identified in middle aged women ( mostly), and due to it's relative slow progression ( in most cases) initial transplant happens in 50-60's, so people may die before PBC re occurs unless it's particularly speedy progression, thus only one third of cases. This stat may change now more people are being diagnosed at a younger age, or due to new medications etc
Anyway, as mentioned every case is different and individual doctors will advise based on each case. Its always worth asking these questions.
Everyone approaches illness in different ways, as you day Becca 75, you want to get as many facts as you can, be informed to be able to make considered opinions. Altough hopefully before/ if you ever need a transplant they might be growing them from stem cells bu then??
I was amazed when I met someone who had had PBC for 20 years and didn't know what the different tests she had meant, or her blood test results or anything. She said she preferred to let the doctor deal with all that, and was happy to be ignorant of everything. Guess we're all different!?!
Are you in the US? I'm amazed at what your specialist said. A living donor most likely would be used?? How has this conclusion been reached? Is she speculating that by the time you need transplant it will be the common way?? Or was she being specific to your case?
Well, this might make me very unpopular, but I agree with the doctor. Testing your sister's liver now is an extensive and sometimes expensive process to see if she is really a potential match. Plus, if she is a match now, it doesn't mean that she will still be a match later if/when that time comes.
Also, I've never known a heavy drinker to stop drinking because their family needed them to stop. Alcoholics keep drinking even if it means it that they hurt their loved ones, lose their job, lose their house, become homeless, and even if they know they are killing themselves. If she wants to stop, she needs to get professional help. The cause of the problem is not a lack of reasons to stop. It usually goes a lot deeper than that.
Its a good discussion, though. I like reading all these replies. I didn't know all this about living donors for PBC.
I didn't want the doctor to test everything ; she was looking to see if she was a match - even knowing if our blood type matched would have been enough at this point.
SHE was the one who said anything about getting checked to see if she was a match. I didn't ask her. No one has asked her to stop drinking - but at the same time even her plan is to donate, I can't accept a damaged liver.
Turns out she thought that if she was a match she could donate NOW and I'd be cured. So when her doctor explained it doesn't work that way - that was pretty much all she needed to know at this point
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