ESRD patients as donors

[MooseMom]

The topic of organ and/or tissue donation is important to those of us who are hoping for a transplant somewhere down the line.  We hope to have an organ generously donated to us so that we might have a chance at a "normal" life.  So it got me to wonderin'...upon the death of someone who is on dialysis or has had renal disease or who has been transplanted, is there any bits of them that are worthy of donation?  Take my case...I'm basically healthy but have fsgs.  I take lots of meds.  I know I can't donate blood, but if I were to die, could I donate any part of me?  Corneas?  Pancreas?  Anyone know?

[okarol]

I know of two patients whose organs were donated after death. One was Justin, a young man with ESRD, and his mom Lori was a member here on IHD.
The Department of Motor Vehicles told Jenna to go ahead and mark "yes" on her renewal, and let the doctor's decide if she's a viable donor upon death.
I recently read the story of a woman donating her husband's face for transplant after he died following heart transplant surgery. http://abcnews.go.com/GMA/MindMoodResourceCenter/excerpt-match-susan-helfgot/story?id=11849966

[RichardMEL]

Absolutely!! I have my organ donor card on me. My heart, lungs and liver are all in good working order(I believe) and would be suitable for transplant, probably skin as well. Corneas probably not, but it's up to them to decide if/when the time comes. How could I not put myself up as an organ donor given how much I want one myself? It seems hypocritical to NOT at least offer. If it's decided, due to the crap floating around in my blood, that my organs are no good - well so be it - at least I feel good that I am doing the Right Thing - both generally, and so that I'm not a hypocrite.

[Stoday]

I feel bad when I get the occasional blood transfusion, because I never gave blood when I could have done. Scared of the needle.

Oh the irony!

[YLGuy]

I gave almost 4 gallons before my kidneys failed.  I was really bummed that I did not get my 4 gallon pin.  My oldest donates regularly.  He has been doing it since he was 16.  He is also registered in the bone marrow directory.  My 17 year old daughter has also started to donate blood.  I am an organ donor and have been long before I knew I had kidney problems.  I am sure I have some parts that could be used after my passing.

Face?  If someone really wants this mug for the rest of their lives they can have at it. 

[silverhead]

They took Sharon's Corneas and have already sent me info that they were both very good and have been implanted in 2 people who were in need......

[Riki]

both my parents, myself, and my little brother are organ donors.  I've been trying to get my mom to donate blood, because she has a rare blood type, but she doesn't seem motivated.  My best friend donates blood regularly and is on the bone marrow donor registry

[MooseMom]

Oh this is so good to know.  I used to be a regular blood donor.  While I was working in London, a group of us would donate at the local church near our office in the City...we called it "Bloodletter's Hall".  I had a little booklet that they stamped each time I donated.  I still have it all these years later.  But then I got pregnant and then found about fsgs, and once I was put on blood pressure meds, I was told that this made my blood undonateable (I know that isn't a word, but it's late).  So I just assumed that no one would want any bits of me and never signed a donor card or anything.  But now I definitely will...I had no idea that I could still possibly donate anything!  Thanks for setting me straight!

[Jean]

I also donated blood regularly until I got high BP. Also,I have a donor dot on my driver's license. Did not know if any parts were good after ESRD, until some one on IHD told me it was okay. Surely, something in there has to be worthwhile and usable. Maybe even skin?

[Tracy]

We had a lady  here in Texas die young and 100 plus people benefitted from her donating her body.  I am a donor.  I hope they can use anything and everything I've got worth using. 

[MooseMom]

I'm really glad I asked because I honestly had no idea that there might be even a remote chance that someone might want any of my bits and pieces.  I've just joined the organ donation registry here in Illinois, and I have signed the back of my driver's licence.

 

[YLGuy]

 

[KICKSTART]

How strange many years ago i was told that i wouldnt be a fit candidate to donate as renal failure affects so many other organs and all the drugs we take dont help.

[okarol]

How strange many years ago i was told that i wouldnt be a fit candidate to donate as renal failure affects so many other organs and all the drugs we take dont help.

Yes, that was the standard response years ago. But now your organs might be great for someone who will except a extended criteria organ, and would have no other opportunity if you had not donated. You never know!

[cariad]

In rare cases, even transplanted organs can be re-transplanted. This has happened with a heart and I think one other organ. I expect to outlive the age where my organs would be very desirable anyhow, but if I get into some tragic accident, I will hopefully have been off the drugs so long that they will take everything. I have even wondered if I could do a live donation in a few years - liver or bone marrow. I really wanted to do that before my transplant, but after having our lives derailed so much from the transplant experience, I do not know if I will have the nerve to follow through! Also, could I put everyone through that again? Perhaps no....

I've never been able to donate blood. Too young, then too underweight, then once you've spent any time in Britain, they blacklist you. They aren't too keen on anyone who's visited Africa either. No one with tattoos (though that is not an issue in this house) so really I do not think I've ever told anyone at the blood drives about the transplant. If you go anyway and give it a shot, they give you a sticker that said "I tried!" and offer you the cookies and juice as a consolation prize. Try it, you'll see....

[MooseMom]

then once you've spent any time in Britain, they blacklist you.

Really???  I didn't know that!  Why?

[RichardMEL]

How strange many years ago i was told that i wouldnt be a fit candidate to donate as renal failure affects so many other organs and all the drugs we take dont help.

I wondered about this too, but then I thought  - well I'll be dead, and let THEM make the decision. If they can't use them well they can't, but if there's a chance that they can use somehing of mine, then that's fantastic - even if I pass before I receive a transplant (hopefully unlikely ) I'd still like to think that I'm doing the right thing - not just because I so badly need an organ myself, but in general to make the effort to give something back.

[MooseMom]

I was told years ago that I couldn't donate blood anymore because of the bp drugs, and I asked again more recently and received the same reply, but I have more than just blood to give...

[okarol]

then once you've spent any time in Britain, they blacklist you.

Really???  I didn't know that!  Why?

I think it's due to Mad Cow Disease.

I found this on Yahoo Answers:

"The group of people you are talking about are allowed to give blood in the UK, but not in some other countries such as the US. In the UK we figure that people here have already been exposed to plenty of prions (the infectious agent that causes mad cow disease) during the 80s and 90s, so it's not that much of an extra risk for them to get a blood transfusion from another British person. But people in countries that didn't have much BSE, such as the USA, have not been exposed to the disease in the same way that British people have. Therefore if they have a blood transfusion from a British person, there is a miniscule but real risk that they could be exposed to prions for the first time. Places like the USA are not prepared to take that risk.

As far as I'm aware, 3 people in the UK have caught mad cow disease (it's called vCJD in humans) from having blood transfusions from an infected person. The important thing is that the person who donated the blood was fine at the time they gave the blood - the blood and other tissues are infectious before the person gets ill. Diseases caused by prions can have very long incubation periods, i.e. it may be decades before someone shows any signs."

[cariad]

then once you've spent any time in Britain, they blacklist you.

Really???  I didn't know that!  Why?

New-variant CJD, or in colloquial terms, mad cow. Ugly condition as I'm sure you'll recall. Trouble is, there is no significant evidence that you can catch that from a blood transfusion. Also, I turned vegetarian a few years before my first trip to the UK, so I am in no danger of coming down with it. Chances are, if you've not come down with it by now, you never will.

Gwyn has been told that he can never donate and I guess they frankly do not know enough about the prion diseases to say that anyone is definitely in the clear, so they are exercising extreme caution. With trips to Africa, they only make you wait a year - I guess with the understanding that if you contracted HIV, it would turn up in their tests and be screened out after a year's time. I don't take blood pressure drugs, but I used to and I'd never heard that before. Wonder what is going on there?

[cariad]

then once you've spent any time in Britain, they blacklist you.

Really???  I didn't know that!  Why?

I think it's due to Mad Cow Disease.

I found this on Yahoo Answers:

"The group of people you are talking about are allowed to give blood in the UK, but not in some other countries such as the US. In the UK we figure that people here have already been exposed to plenty of prions (the infectious agent that causes mad cow disease) during the 80s and 90s, so it's not that much of an extra risk for them to get a blood transfusion from another British person. But people in countries that didn't have much BSE, such as the USA, have not been exposed to the disease in the same way that British people have. Therefore if they have a blood transfusion from a British person, there is a miniscule but real risk that they could be exposed to prions for the first time. Places like the USA are not prepared to take that risk.

As far as I'm aware, 3 people in the UK have caught mad cow disease (it's called vCJD in humans) from having blood transfusions from an infected person. The important thing is that the person who donated the blood was fine at the time they gave the blood - the blood and other tissues are infectious before the person gets ill. Diseases caused by prions can have very long incubation periods, i.e. it may be decades before someone shows any signs."

Oops, Karol got there first. Speedy admins and their mad google skillz! I tell you what!

[Riki]

How strange many years ago i was told that i wouldnt be a fit candidate to donate as renal failure affects so many other organs and all the drugs we take dont help.

I wondered about this too, but then I thought  - well I'll be dead, and let THEM make the decision. If they can't use them well they can't, but if there's a chance that they can use somehing of mine, then that's fantastic - even if I pass before I receive a transplant (hopefully unlikely ) I'd still like to think that I'm doing the right thing - not just because I so badly need an organ myself, but in general to make the effort to give something back.

That's my thought too.  I'm going to be cremated, so it's not like they'll need a body to view at the funeral. They can take what can be used and burn the rest.  My parents and my brother know that this is what I want, and if I ever marry, my husband (or wife, you never know. *L*) will know this as well.

[MooseMom]

Oh jeez, I lived in the UK from 1985 to 2003, so yeah, I know all about BSE and vCJD!   I remember there being a silly song whose only words I remember are "Bo-vine spon-gi-form-en-ceph-a-lo-pa-thy, la dee da" or some such thing.  Urp...I remember very well seeing on the news video of mass pits where they were burning cow carcasses.  As I remember, they finally decided that one cow was infected after it ate a ham sandwich dumped in a field by a foreign tourist, but maybe I just dreamed that...and that's how the whole epidemic started. 

Re blood transfusions and bp meds, I think it was the atenolol I took that prevented my blood from being worthy.  I stopped by a mobile blood wagon outside the Whitgift Centre on the High Street in Croydon and asked if I could give, and they told me no because of the meds.  Just a year or so ago, I asked my neph here in the US the same question and got the same response.  It could be the ramipril, though.  Dunno.

[RichardMEL]

I just presumed that while on D I couldn't donate for a number of reasons - blood volume being taken out probably has an affect on D, but more importantly all the toxins, too much potassium or phosphates or whatever, and not enough hemoglobin etc would probably not be very good to give someone who's already in poor condition and needs good, healthy, blood, so I just never figured it was an option (and have had to put off more than one red cross person trying to convince me to donate blood.. in the end I have to stick my fistula in their faces so they'll believe me!!).

hmm maybe next time I'll just say I'm HIV+ and that will make the whole process much quicker..... with the bonus that they'll probably avoid me from then on.....

[MooseMom]

Maybe a dialysis patient can't give blood, but according to other posts, you may still be able to donate something.  But it would be interesting to know exactly WHY a dialysis patient could not give blood.  If you're taking epo and are not anemic, would there be a problem?  Is it K or phos overload?  Could just the plasma be used?  Or is it other meds that make it impossible to donate?  Or are these really stupid questions?