organ donation
 

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.

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

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???

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...

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

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

Interesting topic - thanks for bringing it up!!:hug:

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!!:hug:

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!!

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!!

Allie,

There are some medications that preclude you from donating blood, but most meds are fine. I'm on a slew of them and they take my blood and platelets.

***********************************

I do know for a fact that we cannot donate bone marrow or do live organ donation because of the risk of spread of RSD.

I hadn't thought about post mortum donation being ruled out. I wouldn't think it would be ruled out.........it's my sympathetic nervous system that is screwed up......my heart, liver, kidneys etc are fine (so far, lol)

I have finally been approved by my insurance to see Dr. Timothy Lubenow at Rush University in Chicago (my local docs have given up on me). He's done a lot of research into RSD and treats many patients. I will ask him about organ donation when I'm there on April 8th (I promise I won't forget!!) and I'll let you know what he says.

BTW, any one else on here ever seen Dr. Lubenow???? If so, what did you think???? Thanks all!!!

I am very hesitant to donate my organs because of the RSD. You never know what an organ of ours (with our conditon) might bring about in another person's body. I would feel terribly guilty about that, if the RSD somehow ended up in their system. Too little is known about the exact workings of the condition to really know for sure that you won't harm another person by donating your organs. Since I have RSD, I no longer am willing to donate any organ. It's a very conscious choice I made.

Hi,

I am in 100% agreement. I hope to donate my organs to science though.

Hugs

I also plan on donating for science and others. I think that one of the concerns would be the length/strength of medications I have been on for so long. The way I see it is if my body can help in someway I'm all for it

I'm with you all. I'm giving up all my organs that they can use. I figure I don't need them and maybe someone else can have a life with them. In so far as giving someone rsd. I kinda think that they would rather live with that possibility then die waiting for something else. I could be wrong, but if it were me, I would take the chance. My biggest concern would be the amt of drugs I'm on. Whoever gets any part of me is going to have an interesting time.:eek:
Hugs
mary

This is such an intriguing subject. I have been listed as an organ donor for many, many years. I have not considered that the RSD might be somehow passed along to a recipient. How I would not want to be responsible for that!

This has given me cause to think. For now, I believe I will continue to be registered as a donor.

Mike

Hi Mary and all,
I rather agree with this......if it were me or my family member, I would rather have the risk of getting RSD than to die from organ failure. I think they test the organs to make sure they're "healthy" to be used. There is NO evidence that RSD is contagious. Even if an organ is affected (as long as it's still healthy) the damage would have been done by OUR brain signals sending faulty messages to the organs, not the organs themselves.

I am seeing Dr. Timothy Lubenow in Chicago this Wednesday. He has done lots of research into RSD at Rush University and treated many patients. I will ask him his opinion while I'm there and let you know what his feedback is.

Thanks to all for the interesting dialogue and points of view. I can see and relate to each one, frankly. I have always wanted to be an organ donor and would feel very badly if my RSD made that impossible. Thanks again!!

HI all!! I survived my appointment with Dr. Lubenow in Chicago. I asked him about organ donation (he has researched RSD with Dr. Kirkpatrick and several other big names in RSD) and he said, "It shouldn't be a problem". I'm taking that to mean it is ok as long as our organs are still in good shape. I just wanted to update!!

Thanks, for the update.
It makes sense that we can still donate. My lungs and heart are effected. I get tested and both are structurely fine. It's the communication between the brain and organs via the sympathetic nerves that is messed up due to the RSD. I'm no doctor this is just the way I understand what's going on. If our organs are damagd due to other conditions that' a different situation.
Take care,
Sherrie

My 2 cents ONLY
 

Since, all of this is hypothetocol at this point, but still considering the importance of this question, I would like to have some input here. My theory on this is that since we really DON'T know the cause of RSD/CRPS or the consquences of the donation of one of our organs, I suggest we let those who are more healthy without a diagnosis that is questionable, carry the torch on this one. I can not imagine what it would be like for a desperate organ recipiant to receive an organ and suffer the consquences of this uncurable disease. You may argue that it should be a personal choice, but clearly there should be a standard set to resolve any liability.
When I first was diagnosed, I was sent numerous letters requesting my cadaver upon my death, for research for RSD/CRPS. Maybe, just my opinion...this is the path we should champion.
Here is a link for more information on RSD/CRPS. Again, just MY opinion.


http://www.ninds.nih.gov/disorders/r..._dystrophy.htm

What is Complex Regional Pain Syndrome?

Complex regional pain syndrome (CRPS) is a chronic pain condition. The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. CRPS most often affects one of the arms, legs, hands, or feet. Often the pain spreads to include the entire arm or leg. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling. Doctors aren’t sure what causes CRPS. In some cases the sympathetic nervous system plays an important role in sustaining the pain. Another theory is that CRPS is caused by a triggering of the immune response, which leads to the characteristic inflammatory symptoms of redness, warmth, and swelling in the affected area.

I agree with DianaA. There just isn't enough known about RSD to donate organs to living recipients. RSD is too awful to risk giving to anyone. The option to science is a noble one. I applaud everyone who could do it. Because I couldnt and won't do it. You are just a giving group of people.
Hugs, Denny