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.

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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.
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