houswoea Posted January 20, 2011 Report Share Posted January 20, 2011 yeah, I'm going to post two questions... don't be mad! :-P No one else seems to know!I really want to join the registry. It asks if you're on any cardiac meds or if you're in "good general health"... but POTS isn't a heart issue and I mean, I'm not stellar, but I'm not dying. And I mean on my drivers license renewal I said I wasn't taking any meds to help prevent loss of consciousness which was also a lie, and I've been good so far...I really want to help the people who can't fight without our help! I mean, whats a little (a lot?) of tachycardia and passing out on the table compared to helping save a life??Opinions? Has anyone joined? Thanks for your help!!Eli Quote Link to comment Share on other sites More sharing options...
corina Posted January 20, 2011 Report Share Posted January 20, 2011 i don't think you can donate when you're on any kind of meds. if i were you i'd find another way to help people. you could be a listening ear or take people on a little car trip or what so ever. there are lots of ways to be usefull/helpfull to others, you just have to find what suits you (and them) best. good luck,corina Quote Link to comment Share on other sites More sharing options...
Lenna Posted January 20, 2011 Report Share Posted January 20, 2011 If you joined and you were picked as a match for someone, you would have to go through a very thorough physical exam. They would need to know about any physical problems that you have. Then you would be given drugs to stimulate the growth of your bone marrow. Then you would undergo a procedure under anesthesia to remove some bone marrow.It doesn't make me angry that you want to join the registry - it makes me feel that you are a wonderful person. My husband received a bone marrow transplant in May because he has chronic leukemia. All we know right now about the person who donated is that he is a young, healthy man who lives in Germany. We hope that his body is healthier than my husband's because his cells have to kill each and every cancer cell that lives within my husband's bone marrow. His cells will hopefully take over completely -- my husband won't even have the same blood type that he had for the first 58 years of his life! It would be a tragedy for us if the donor had an unrevealed problem, like chronic fatigue syndrome for example. (people with CFS are not allowed to donate blood) So far my husband is doing well.I hope you can find a way to channel your wonderful spirit into another path of helping people!Be well,Lenna Quote Link to comment Share on other sites More sharing options...
houswoea Posted January 20, 2011 Author Report Share Posted January 20, 2011 Sad. Can;t give blood, can't give bone marrow.But you can't get POTS through blood, so I guess I don't understand why we can't!thanks for the responses!Elizabeth Quote Link to comment Share on other sites More sharing options...
sugartwin Posted January 22, 2011 Report Share Posted January 22, 2011 I was on the registry before I knew I was ill, was found to be a match to a man in Germany and donated. The procedure severely worsened my underlying dysautonomia. I've been booted from the registry now because of POTS, EDS etc. I'm a little sad, because although my donee is in remission now, if his leukemia were to reoccur, I would no longer be able to help him. Quote Link to comment Share on other sites More sharing options...
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