Can I still be an organ donor?

[Nissa]

Obviously, if something were to happen to me, no one would want my liver, but could I still donate my other organs? Can people with PBC donate blood?

[Beanie]

I've heard we shouldn't give blood, but I'm not sure about organ donation. This is a good question, as I signed up on the organ donation register this week. I figure that if they can use any parts, they're welcome to them, but if I'm not suitable, then they won't take them!

[ellgeejen]

Hi Nissa, i spoke to the blood donor people when I was diagnosed 2 years ago and they said it was fine to still donate, I too carry a donor card with the same conculsion as Beanie in that they will use what is suitable, and also because we may need a donation one day!!

[bev5779]

NO we deffo cant give blood or organs,, and if our liver fails and we need a new one that will also get PBC,,, x x

[Rosehip19]

I have carried a donor card for years, and when my brother needed a liver transplant (due to hepatitis) I thought I could give him a bit of my liver. Then I discovered I had PBC and of course that was out of the question. Last year I asked my consultant if I could donate other bits of myself and he said yes that was absolutely fine. Even things like arteries can be used in a transplant situation. So please, sign up as a donor.

My brother had his transplant nearly ten years ago, and hasn't looked back. Hurray for all those who donate.

[Hidden]

With regards to giving blood, from what I know one with PBC can't. It makes sense in some way as there will be the antibodies in it. But I suppose other factors can also make one not likely to give blood. I had a problem several years ago, I was at the time a bit short of iron so was declined at the time.

As for being an organ donor, that is possible as other organs like the heart, corneas, kidneys, etc if deemed in good condition could be used.

[SC49]

I've had conflicting advice about blood. I've been trying to find out if I can be a donor for stem cells because i know that there is a huge shortage of donors on the register. Apparently there are 32000 people worldwide waiting for a matching donor! I havent found anywhere that would take me as a donor. I am too old and I have PBC. I am more annoyed about being too old - in my head I am still 16!

i carry a donor card - same as the others, they are welcome to any bits that they can use.

i didnt know it was certain that we would get PBC after a transplant - i thought it was just a possibility!

[CKH73 in reply to SC49]

I didn’t think it would return if we got a new liver. Hopefully we will not have to find out!

[Nissa]

Thanks for your responses. When I found out that I might need a liver transplant someday, the hardest part was realizing that that would mean someone else would have to die in order for me to live. I know that organ donations come from people who would have died anyway, but it's still a hard concept to deal with. I felt a little better knowing that I had signed up to be a donor myself.

[berg944]

I was diagnosed with pbc yesterday. I believe it started 3 years ago after a long stay in hospital. I was in a car crash, it took 2 hours to cut me out and I very nearly did not make it.

If some people have been allowed to give blood and should not have then could i have contracted the pbc though a blood transfusion?

I am told this is a rare disease so I guess blood is not screened for it!

[Nissa in reply to berg944]

I've been doing a bit more research on this topic, and as far as I can determine, PBC probably can't be transmitted via blood donations, although people who have PCB shouldn't donate blood. According to pbcers.org :

"Patients with most autoimmune diseases cannot donate blood because of so many unknown factors of these diseases. There is no evidence for danger in transfusing blood, but there is no evidence or experience to support its safety. To be safe blood cannot be donated"

[Axl888]

PBC is an autoimmune condition ... why would receiving blood from someone with PBC be dangerous???