Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Jeff, You ask a good question. Some of us have experienced being turned down when we try to donate blood due to the unanswered questions about how one really does get a spondy disease. Most are turned down because of the medications we take. As to organs, if it is a healthy organ and useable I would like to think that it could be used to save or enhance another's life. That decision would be up to our families and our physicians at that time. Hopefully, JEff, that won't be anytime soon for any of us. Ray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I asked this question of my rheumy once. He told me to basically check the box, but to be sure and write my diagnoses as well. The decisions would then be left up to the harvesting doctor upon my death. He did say that due to the nature of our disease, many of our organs would be rejected, because of damage and weakness, but that no matter what diseases a person suffers, usually some of their organs can be harvested. Regarding blood, I always got rejected, period. Hope that helps some ! Robbie in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 Here is a quote from the www.cfids.org <http://www.cfids.org/> questions and answers on the issues: Quote: Q. Should people with CFIDS donate blood? A. Donating blood may not be safe for persons with CFIDS (PWCs), as research has shown that many PWCs have low blood volume and other vascular problems, and removing additional blood could provoke a relapse. Additionally, CFIDS patients should refrain from donating blood, bone marrow or organs, as it is currently unknown whether or not the illness may be contracted in this manner. http://www.cfids.org/resources/newly-diagnosed-faq.asp I have in addition to the CFIDS, Lyme and FMS diagnoses a Monoclonal Gammopathy of Unclear Significance (MGUS), this is the official name. It may lead to Multiple Myeloma, Lymphoma et al. So for this reason I was told not to donate anything. What concerns me is that the test for this is not routinely done even in people with connective tissue disorders when being worked up. I have always wondered how many people have this pre-cancer flag and do not know it, and donate. I know I carry high antibodies for Mono and maybe for CMS. I figure that my blood is making me sick and could kill off someone else in a transfusion. I do have low blood volume and MNH too. Shalom, W * -----Original Message----- Does anyone know if or where this (blood donation issues) has been stated in a peer-reviewed article or if it has been published anywhere? Cheers, Tansy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 IAIYH + it's all in your head. cheers, Tansy > > Hi, > Excuse my complete ignorance but what is: IAIYH?? Being new to the site I probably missed it? > > Many thanks, > > > (UK) > Re: Blood and organ donation > > > I have been of the opinion for quite some time that if your doctor tries to push the IAIYH diagnosis onto you, you shouls ask him/her to write you a letter stating that in his/her opinion you are not sufferring from any infectious pathology and that you can become a blood/organ donor. > > I wonder if Simon Wessely and his mob would put this in writing, would anyone in the UK like to ask him? After all since when is " a inappropriate belief system about one's illness " contagious? > > Nelly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2005 Report Share Posted February 22, 2005 Nice one Nelly I bet he would find a way of getting out of it though, he's not called the weasel for nothing. Tansy > Blake, > > Better still, he should be prepared to accept a blood donation of POOLED blood made exclusively from people with a diagnosis of ME/CFS. A form of " put your money were your mouth is " ... I am putting myself on the list, I'll gladly do his CBT if he accepts my blood ) > > Actually that's what all patients should say: " OK Doc, I'll have your CBT if you'll have my blood !!! " > > Nelly > > Quote Link to comment Share on other sites More sharing options...
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