AnonymousSeptember 8, 2006 at 7:08 pm
I was told that people with GBS should not give blood or be organ donors. The argument is that bllod plasma may have something which may make it likely that another person may get GBS. Too little is known about GBS and it’s triggering mechanisms to be sure that an exchange of plasma is 100% safe. Until we understand what touches off the immune system it is better to make sure no one else is going to go through what you went through. If it was a matter of someone dying, then that could change everything.
AnonymousOctober 27, 2006 at 4:51 pm
I had GBS in summer of 1995; shortly afterwards I was told that I should not give blood. My doctor didn’t say it was because it might cause a relapse of my GBS; at that time I was told the reason was due to the IVIG treatments I received. Something about how the many different people’s blood plasma being inrtoduced into my body during the treatments complicated the blood donating process. I don’t know if this is 100% correct, but that’s what I was told. I actually haven’t given blood since then. Hope this helped somewhat~ 🙂
AnonymousOctober 27, 2006 at 5:31 pm
i went to my dr. and asked to be tested to see if i was a match for my best friend who may possibly need a kidney transplant and also to see if i was match for my aunt who has leukemia for a bone marrow transplant. he told me absoloutely not. he said i had to contact the dmv to also take off of my license, (organ donor) and i cannot ever donate blood. needless to say, i was depressed to think after having gbs i can’t help save a life. heck, i probably can’t even donate my body to science!! i also have autoimmune hepatitis which seals the deal of no donations of any kind.
AnonymousOctober 27, 2006 at 10:48 pm
This is a tough one ………..
A friend of mine was saying the other day that we probably shouldnt be organ donars. My question is …. Dont they remove all the blood from the organs once you are DEAD, therefore, shouldnt all the relevant [I]stuff [/I](for lack of a better word) be out of the organ??? and couldnt the organ then possibly be normal?? And when it comes to saving a life, I think I would, as a patient on the brink of death, risk the possibility of getting GBS if I could live for another decade or three ……… BTW, my licence said that I am an organ donor.
For all the advice doctors give, and forgive me for being so pessimistic, do they REALLY, REALLY know???
AnonymousOctober 28, 2006 at 12:02 am
ali. sounds like a good theory to me. as previously mentioned, i went to my dr. to actually be tested to donate my “living” kidney to my possibly dying best friend and to have my bone marrow tested to try to save my aunt with leukemia. i was devastated when he told me i couldn’t. my license still says organ donor on it. i would like to do further investigation on this matter before i remove it from my license. i like your way of thinking. it really makes sense.
AnonymousOctober 28, 2006 at 11:33 am
I believe that the “big” issue is nerve damage. There is no way to know which ones and how much are damaged! Wherefore, you might donate a kidney that might only work well for another week etc. So the issue is passing on organs with damaged nerves to an already compromised person.
Medical schools/science are always looking for bodies to study. I hope that someday, when I don’t need this tired old body anymore, science will use it to help others to have a better quality of life while living with disease.
AnonymousOctober 28, 2006 at 1:48 pm
All the above posts are very interesting. I have been a blood and platelette donor for years. It was a mission I wanted to continue after GBS in 2004. I checked with my neurologist, and with the Red Cross. The IVIG is not a medication of concern. The Red Cross checked it carefully before my return. My doc said if I feel okay, then do it. I am a 22+ gallon donor and plan to continue.
Thank you for bringing this issue up, though., It is an important one.
AnonymousDecember 14, 2006 at 4:17 pm
I guess I just need to be heard, personally I think it’s dangerous and irresponsible to donate our blood given how little we know about GBS and CIDP. I’m not worried about the IVIG, hopefully by the time it got to us it was cleared although I’m always sckeptical.
What triggers our illness? Do we want to pass that on? Or the risk of it? Maybe we got it ourselves from donated blood long ago and it was dormat waiting to be triggered? Personally I would feel terrible knowing I contributed possibly dirty blood to unsuspecting people in need.
AnonymousDecember 14, 2006 at 5:40 pm
I agree with you.
Although I have been a blood donor in the past, and wish I could continue to donate, I won’t do it because I don’t know how safe it would be for the recipient.
We don’t know what causes GBS, and until we do, I can’t in good concience pass my blood or organs along to someone who won’t be given the chance to choose to have my blood or not.
If the person receiving it could be told and gave informed consent, then I would feel differently about this issue.
AnonymousDecember 14, 2006 at 8:51 pm
The following article is ONE case were blood transfusion is linked as the trigger for GBS. The entire article cost $30.00. I did not buy it. So I do not know the rest of the story…
Guillain-Barré polyradiculoneuritis after blood transfusion
Journal The Italian Journal of Neurological Sciences
Publisher Springer Milan
ISSN 0392-0461 (Print) 1126-5442 (Online)
Issue Volume 12, Number 3 / June, 1991
Category Case Reports
Online Date Monday, April 10, 2006
Received: 6 June 1990 Accepted: 30 August 1990
Abstract We report the case of a 72 year-old woman who developed acute polyradiculoneuritis 7 days after a series of 4 blood transfusion. While blood transfusion is not listed as an antedecent event of Guillain-Barré syndrome (GBS), GBS following surgical procedures is well known. In the present case the close temporal relationship and the absence of all factors which usually precede the onset of the disease including surgery, suggest a possible role of blood transfusion in the onset of the GBS.
Key-words Guillain-Barré syndrome – blood transfusion – autoimmune reaction
AnonymousDecember 15, 2006 at 9:56 am
Jfitzen thank you for the link to the article. I’m going to try and get it through a library but if I hit too many walls I’ll probably just spring for it. This is a serious matter.
The more I think about it the more it really upsets me that we or anyone who has survived GBS would knowingly put others at risk of contracting it. If it could be medically cleared that there is no risk of passing it on then sure no problem, even I (the total scardy-cat of needles chicken) would get in line to give my blood. But we’re a long way from being cleared. This issue makes me sick when I think of it.
All I can think is that we (the world, blood collecting organizations, etc.) must be desperate beyond belief to be willing to take these kinds of risks. This really saddens me.
AnonymousJanuary 17, 2007 at 1:15 am
one of the artifacts i’m learning to deal with is that my blood is ‘not good enough’ to continue donating after gbs. it took a lot of phone calls and letters to get up high enough in the local red cross org to get that answer, as gbs is not something they screen for. they kept calling me for local blood drives i used to give regularly, but it was not until i started feeling better that i called them bac and asked if they were still interested. the no longer call back, and i trust others with a- have stepped up to take my place.
the answer for me was that they would discourage me from giving blood for as long as i had some residuals from gbs. things will never be the same, and i’m always looking for other ways to give back to mankind.
another perspective – i’d be sadder if my blood did damage to some poor soul,
AnonymousJanuary 17, 2007 at 2:34 am
ferenc that is very noble of you, I used to be a donor also and was discouraged from doing so anymore. With your knowledge of living and dealing with a serious illness, you should consider maybe volunteering in one way or another to help others cope. I am not sure about a liason in your area, if your interested call the foundation. The number is on the main page. Take care.
AnonymousJanuary 21, 2007 at 3:17 am
hey, jerimy. thanks for the encourating words. you’re a natural.
i visited a local gbser a couple of times while she was recovering – turns out she was an old family friend (parents-parents). she invited me to a local meeting a few years ago, which i attended, but i’ve not heard from the organizer since. i’d be interested in doing a weekend a month, as a reservist, so to speak – i think i’d have that much left in my tank, which now runs at some 75% pre-gbs. thankful for every ounce of it.
anne-marie’s back in action, doing what she does best the best way she can, given the new challanges. i’m saddened and happy and proud of her.
i’m not a good ‘supporter’ – as most engineers, i tend too hard to try and solve the problem. a solution is not what many need or are fortunate to experience – coping with it day by day is the extent of it.
we all learn lessons in life, and inasmuch experiencing life to the fullest is what we’re here to do, i’d be happier if the lessons were not too painful,
sign me wimpy and grateful,
8+ weeks gbs 7/05
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