AnonymousMarch 11, 2008 at 9:06 pm
That’s a very interesting point. My driver’s license has identified that I am an organ donor for years. I never made the connection that if I can’t donate blood that I shouldn’t be a organ donation. I got taken off the blood donation long before I can down with CIDP. I spent three years in Europe during the early 80’s. When the mad cow disease hit the fan all of us who served in Europe during that time period where told not do donate blood. I guess the CIDP makes it a double whammy.
I would be very interested in anyone had a definitive answer to the question. Of course, at my age, there is nothing that work the way it should, so I doubt if they would actually use any of my organs. However, my wife says my brain must be in perfect shape since I’ve never used it.
AnonymousMarch 12, 2008 at 6:25 am
Thanks for the laugh Jim – I’m still chuckling over that one – might steal it too if you don’t mind.
I had no idea we couldn’t be blood donors – who told you that? Not that I’ve really got any to spare right now, and it totally makes sense, but nobody even mentioned it to me. I did know that about the blood donation/organ donation but I wasn’t sure if my info was correct or not. When I got back from the Peace Corps the discharging medical officer told me I couldn’t donate blood or organs for 10 years in case something was sneaking around in my blood. I have to admit I thought that was kind of hinky but I guess it does make sense.
Here is where it gets interesting – I don’t remember changing my driver’s license to say “organ donor” but I looked yesterday and there it was. I’m scared to go get it changed though ’cause I’m scared they’ll take my license away when they see me bouncing off the walls. 😮
AnonymousMarch 12, 2008 at 10:47 am
I think I read in Ds. Parry and Steinbergs book that CIDP patients cant donate organs – however could be wrong. when I get home I will have a look and post.
However, I think if I were about to die of organ failure and I had the only choice of a donor who had CIDP, I’m positive I would give the go-ahead, unless there is more invovled.
Here is a link to a similar discussion we had last year sometime.
AnonymousMarch 12, 2008 at 3:43 pm
Found the passage I was thinking about. Page 193, Chapter 8, Guillain-Barre Syndrome from diagnosis to recovery.
Will first start off with GBS then CIDP donatation.
Fully recovered GBS patients can probably safelydonate organs after death (cadaveric organ donation), although there is very little data on this to guide in making this decision. If a GBS patient has had particularly severe GBS, the possibility of organ damage during the acute illness must be considered. There is no recognized contraindication to a fully recovered GBS patient acting as a live organ donor, but recovering or incompletely recovered patients probably should not consider live organ donation.
The situation is different for patients with chronic inflammatory demyelinating polyneuropathy [B](CIDP).[/B] Certainly they should not volunteer as live organ donors because the procedure or harvesting the organ may induce a relapse of their [B]CIDP[/B]. It is completely unclear whether they can safely be considered as cadaveric organ donors, buty they prob ably should not, particularly if their [B]CID[/B]P still required treatment at the time of death. There is probably no reason why a CIDP patient connot be an organ or bone marrow recipeint provided their [B]CID[/B]P is not sever and is well controlled. In fact, the immune suppression used to prevent transplant rejection is likely also to suppress the activity of [B]CIDP[/B].
AnonymousMarch 12, 2008 at 6:21 pm
Thanks Alison – What I had read about organ donation online was that most people could still be an organ donor after death; the exceptions being active cancer and HIV. But logically, it doesn’t seem that a person with a disease like CIDP could be a donor, that the recipient might end up with CIDP????? or some other auto-immune disease? But like you said, a recipient might be willing to take that chance, but then again, who would make the decision? The hospital?
I know this was a strange question, but it has been on my mind lately.
Jim, you are too funny!
Julie – There was a post earlier about donating blood. I thought the general concensus was that we couldn’t, since our blood has screwed up antibodies?
I think I might contact the United Network for Organ Sharing (UNOS) and ask my question. I will post back when I get a response.
AnonymousMarch 12, 2008 at 10:46 pm
Great question Deem. I too have organ donor on my driver’s license…and I have to renew it in 11/09. So when you get an answer from United Network for Organ Sharing (UNOS), let us know. I’d really hate for someone to get GBS from my organs, when my thought was only to help.
Jim, thanks for your reply. Got a much needed chuckle from it.
Wishing everyone well!
AnonymousMarch 13, 2008 at 9:57 am
The lady from UNOS got back to me on the question about organ donation. Here’s her response:
Thank you for visiting [url]www.transplantliving.org[/url]. * There is no way to know whether or not you will meet the criteria for organ donation at the time of your death. Certain medical issues are contraindications for organ donation; however, medical professionals will make the final determination at that time.* As medical personnel do take donor history at the time of donor evaluation, please share this and any other medical concerns you may have with your family members.
You can indicate your decision on your driver’s license or if you would like to register to be an organ and tissue donor, please visit Donate Life America’s Web site – [url]www.donatelife.net[/url]. * Also, please be sure to let your family members and friends know of your wishes.
AnonymousMarch 13, 2008 at 2:21 pm
I am an organ donor, too. I chose to do so b/c of the lives that I could save and that possibley I’d live on thru someone else. I only hope I have anything good enough left to give. And, that donation isnt one more thing CIDP takes away from me.
AnonymousMarch 13, 2008 at 2:43 pm
I’ve been listed as an organ donor forever and I’ve been in the bone marrow registry for about 15 years. I was never able to donate blood because I didn’t weigh enough (not a problem now that I’m on prednisone, how ironic is it that I weigh enough now, but have poison blood??). I was feeling pretty bad that maybe I couldn’t donate any of my “stuff.” So it is nice to know that is still a possibility.
Now I have to figure out how to motivate my family and friends to donate blood plasma for our IVIG…………Not having much luck there though.
March 13, 2008 at 5:24 pm
I wasn’t sure about organ donating so I had it taken off my ID, then I went ahead and donated my body to science. Figured if I could help them find anything more about CIDP, great. Have something positive done with the remains and not have to worry about giving some hurting someone else.
AnonymousMarch 13, 2008 at 5:56 pm
I’m on the marrow donation list and organ donator also. You CAN give blood!!! as long as you are not in a flare up or relapse at the time. I have had many drs, nurses and the entire Red Cross hire ups check into it and was told as long as I’m not in an active flare up/relapse then I can donate blood But absolutely Not plasma. Blood donation for red cells is not the same as plasma donation. I think the reason behind that ruling is plasma can carry the bad cells in it and red cells don’t. If you have doubts just ask the Red Cross near you and they will give you an answer. other factors go into deciding if you can donate red cells or not, its just like this stuff a very individualized thing.
AnonymousMarch 13, 2008 at 10:14 pm
somewhat ‘mushy’ answers about this issue. I think if you look up ‘blood donor questionaire’ you will find that donating blood is OUT for anyone receiving IVIG. But, I was told that in my state that it’s all reviewed on a case-by-case basis regarding CIDP and what organs might be used.
Ironic isn’t it? That those of us on IVIG would be ineligible for potential recipients who would probably NEED IVIG following their transplants to avoid rejection?
Somehow, in so many ways the whole thing doesn’t ‘compute’.
I intend to stay on the donor list and truly hope that should something happen to me, that good could come out of it all. I can always hope.
AnonymousMarch 14, 2008 at 11:19 pm
CIDP patients cannot donate bone marrow. I was listed in the National Marrow Donor Program, but I contacted them after I was diagnosed with CIDP. This is the response I got:
[SIZE=2][INDENT]Thank you for your interest in the National Marrow Donor Program. This is in response to your e-mail letter concerning your change in health status. Based on your medical condition and the NMDP’s medical guidelines you would be deferred from the National Registry. We will remove you from the Registry at this time.
National Marrow Donor Program
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