[MominPainRSD]

I don't know if this is morbid or noble, but I had always intended to be an organ donor upon my death (much later, I hope). Does anyone know if we are still allowed to donate our organs even though we have RSD?? I had heard we can't but can't find any information to indicate one way or the other. Thank you in advance for any replies.

[GalenaFaolan]

As far as I know, if a person's organs are in good "shape" so to speak and can be donated then they'll harvest what they can use and, obviously, leave the ones they can't. LOL Where did you hear we can't donate our organs?

I've had organ donor on my state id since the day I first got one. I'm being cremated when I die, and if anything from me can be used to help someone then have it! It's not like I need them anymore. ROFL

Hugs,

Karen

[MominPainRSD]

Hey Karen!!! I haven't seen you around in a while and have wondering how you've been doing!! I'm glad you're obviously ok!!

It must have been a nasty rumor I heard through the grapevine regarding us not being able to donate. I feel the same way as you do about organ donation. Anything that is still usable after I die, I want to be used by someone else.

Honestly, if one of my kids needed a kidney while I was still alive, and I was the best match, I would still risk my RSD spreading in ME as long as they weren't more likely to get it themselves. I know there is a genetic predisposition to my offspring anyway to some extent......it all gets complicated.

Anyway, I appreciate your feedback!!! Has anyone else heard anything differently???

[llrn7470]

So depressing that I know this-another ICU nurse nugget. I have never heard of them even considering a diagnosis of RSD when patients are evaluated for organ donation. I would think that the biggest concern would be live-donation due to spread for the donor. However, considering some of the speculation about "causes" and "predisposition" for development of RSD recently on the board, I don't know that it would be a 100% non-contributor. However, I assure that they take A LOT of organs which are marginal at best-you wouldn't even want to know-the least of a person's worries would be RSD. Though, you've got to wonder about those who have spread to their abdominal organs...

[angelrsd]

no one wants be orgnas heart isnt so great or kidneys who knows about liverLOL my sister has been designated as my offical donor on stand by its kinda a joke around here LOL its not a funny subject. but i would suppose that if you didnt have any organ troubles that you should be able to donate w/o problems

just my opioin
carrie

[info hungry]

Originally Posted by angelrsd

no one wants be orgnas heart isnt so great or kidneys who knows about liverLOL my sister has been designated as my offical donor on stand by its kinda a joke around here LOL its not a funny subject. but i would suppose that if you didnt have any organ troubles that you should be able to donate w/o problems

just my opioin
carrie

Hi everyone,
Wishing you a warm cozy evening....its cold in the North East. Brrrrrr

i have been an organ doner since my nephew was one of the first to need a liver because of alpha one anti-tryps def. rare liver disease. My dr. told me that even if my organs were not usable for transplant donating my body to science to find a cure for a disease would be just as important. When they are done using whatever they need then I would be cremated. So think of your remains helping someone someday......is well a promising thought.

Debbie

[angelrsd]

yea i have talked about donating to science w/ my neurosurgeon that is what i plan to do ...i think that at least that maybe they can get some answers... oh while were on this subject i have seen some studies in germany or italy dont remeber which country but that had ppl opt for amputation and studied the tissue's and the effects of rsd on the affected body parts it was interresting i guess i need to find it and maybe you would like to read it. it was interesting !!

carrie

[ali12]

Interesting topic - thanks for bringing it up!!

I too have always wondered about Organ Donation and RSD. I have always told my mum that if anything happens to me (and I sincerely hope and pray it doesn't), that I would like to have my organs donated. My cousion was diagnosed with Cancer after I developed RSD at 3 years old so I have seen what she and her family had to deal with and just how scary it was.

I haven't really seen that many, if any, articles on the internet about Organ Donation and RSD. I know you can't give blood if you are on any medications so I would think that that would be the same for donating your liver, especially if you have been on any medications over a long period of time. I do agree with what the others have said though that I would think that they would be able to test all of the organs and see if they are working OK and use the ones that they feel would work best.

I would talk to your Pain Management Doctor about this and see if he/she had any input on it as I haven't really read anything about Organ Donation and RSD. Please let us know if you hear anything and thanks again for bringing this topic up - it is really interesting!!

[MominPainRSD]

Ali,
That's a really good idea! I didn't even think to ask my Pain Doc. I go in to see him March 26th (unless I can beg for a cancellation before then......I am burning all over now and feel awful......I keep waking up in the middle of the night in pain and can't sleep). Thank you for suggesting!! I'll keep digging until I can find the answer. I'll keep everyone posted and if anyone else has any more input, let us know!! Thanks to all!!

[MominPainRSD]

Originally Posted by angelrsd

yea i have talked about donating to science w/ my neurosurgeon that is what i plan to do ...i think that at least that maybe they can get some answers... oh while were on this subject i have seen some studies in germany or italy dont remeber which country but that had ppl opt for amputation and studied the tissue's and the effects of rsd on the affected body parts it was interresting i guess i need to find it and maybe you would like to read it. it was interesting !!

carrie

Oh, Carrie, do try to find that when you're feeling better. I don't want to sound gross, but that would be very interesting to understand what is actually going on in there. Take care of yourself!!