Transplant Week: I would just like to remind... - PBC Foundation

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Transplant Week

LindaRose profile image
15 Replies

I would just like to remind everyone that this week is Transplant week, having had a liver transplant and knowing how long people are awaiting transplant - do encourage everyone you know to go on the organ donor register. People are dying everyday because there are not enough organs.

90% of prople would receive an organ if they needed it but only 25% have signed up !

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LindaRose profile image
LindaRose
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15 Replies
kosy2 profile image
kosy2

I am an organ donor and have been for over 30 years. My question is now that I have PBC and probably 3 other autoimmune diseases can they still use my organs?

All the very best ot you and know you will be in my thoughts and prayers. Will be looking for update when you are able.

BIG HUGS

Michele

LindaRose profile image
LindaRose in reply tokosy2

The professionals will see at the time, so it's always worth saying you will be a donor - you just never know ! thanks for registering

zipitydoo profile image
zipitydoo in reply tokosy2

That is something I have wondered about. Also wondered about blood with the auto antibodies in it.

I used to carry a Donor Card until the register was set up when I decided I no longer wanted to do so.

Given I now have PBC I would decline regardless and not out of being selfish, I have other reasons.

LindaRose profile image
LindaRose in reply to

It's obviously your choice, but what if you need a transplant - will you accept an organ?

catherine69 profile image
catherine69

Myself and all family members are organ donors :)

I am not on any register but my family ( my husband knows my wishes and they can take what they want,) i have always been for organ donation but have not done anything about it lately as we are haveing an opt out system in Wales next month I think.

Tumbleweed41 profile image
Tumbleweed41

Lindarose -

Is this week of awareness just "over there"? I think I need to check here in the States to see if we have anything like that here.

I was a donor until I got all this "stuff" but then decided not to in fear of infecting someone else. Why raise someones hopes just to have them dashed because of this blasted disease??!! I have tried to encourage my family to become donors, however.

LindaRose profile image
LindaRose in reply toTumbleweed41

not sure when it is over there, but you should be on the register anyway, they make the final decision on using anyone's organs, so do it! when I had my transplant, they said they may use my PBC liver for someone who had hours to live - not sure if they did!!

wongie profile image
wongie

I am an organ donor and have been for years. There is no way I could accept an organ for myself if i wasn't on the register. Just how I feel personally.

LindaRose profile image
LindaRose in reply towongie

That's great - wish more people thought the way you do ! all the best

littlemo profile image
littlemo

Hi Lindarose when did u have your transplant and how are you doing, good I hope?. I have been a donor since my college days and think if when I die I get to give new life to lots of people it would have been well worth popping my clogs for! (Though hopefully not for a while yet!) From the point of view of our ivers they could be used for research another good reason to donate.

LindaRose profile image
LindaRose

Absolutely !! so all in a good cause !! I had my transplant 9 years ago and am doing brilliantly ! thanks for your post.

littlemo profile image
littlemo in reply toLindaRose

Hi Lindarose I am going for assessment soon to see if eligible to go on transplant list and to be honest its scaring the hell out of me pardon the expression. Now I have two friends who have had transplants and one is doing brilliantly like yourself the other not so good always seems to have chest infections which i know is due to the immune system being suppressed but also think maybe she may not concentrate on her diet enough. Did you have to wait long before you had your transplant?

LindaRose profile image
LindaRose

HI Littlemo

waiting time on the list varies enormously as it depends on what bloodtype you are. I didn't wait long at all. You can always message me privately at the top in messages if you want support - I am happy to help- it is a scary time but try to remain positive as its an exciting time too.

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