I can't donate bone marrow? - Madwolf?

Discussion in 'Fibromyalgia Main Forum' started by LadyMT, Jun 13, 2003.

  1. LadyMT

    LadyMT New Member

    I have been on the bone marrow donor list for the northwest for several years. Tonight, I get a phone call stating that I am a potential match and asking if I would be willing to have more tests done. I said sure! Then explained that I have been dx'd with fibro and asked if it would be a problem. The answer was yes. Something about in the past they have found that the host rejects fibro blood more often for some reason. I was told if they discover this information is wrong I will be put back on the list.

    This makes me sad. All this time I have been waiting to help someone (my son died from leukemia at 8 1/2 months old) and when I might have a chance I can't because of this DD?! grrrrrrr And what if I was the ONLY potential match? Some child might not live because I have fibro?

    So now, this may not be just affecting me and my family, but potentially someone else whom I might have helped.

    Ok, I just had to vent for a moment. Thanks for listening.

    [This Message was Edited on 06/15/2003]
  2. Susan07

    Susan07 New Member

    FM strikes again - dang!
  3. billiegail

    billiegail New Member

    reconizes FM. We should mention that to our doctors. Maybe then, the non believers, will pay more attention to FM when they see that marrow patients reject our blood more often than not. They have to have reason for saying that. It has to be from trial and error or so that is what the statement implies.
    I wonder if we can get some written proof of that. Hum...

    It is sad though that we are limited in yet another way.
  4. Dara

    Dara New Member

    to know that you could have helped save a life, and now because of FM you can't. I am also listed on the bone marrow registry and I would be thrilled to get a call. But, now with what you are saying, I wonder if I should notify them to remove my name. My daughter also had Leukemia (AML). She went through treatment and has been in remission for six years now. I know how important it is to be able to find a bone marrow donor who is a match. I'm sorry that you got the call and are unable to help, I understand just how you must feel.

  5. gotcha

    gotcha New Member

    I wonder why? do they know something we should. Maybe next time, and your son would be so proud of you for what is in your heart.
  6. LadyMT

    LadyMT New Member

    Just a little bump. :)
  7. Mikie

    Mikie Moderator

    I do not believe it is safe for us to donate blood, marrow, or organs. Rejection is a horrible thing for the sick person to go through. I would hate to think that in my desire to help, I actually made someone sicker. Be glad that medicine is finally recognizing the dangers of our illnesses.

    A stealth pathogen uses one's own DNA and/or RNA to hide from the host's immune system. Perhaps the donee's system can detect this abnormality and rejects the blood/marrow as being very dangerous.

    Love, Mikie
  8. j-bearmama

    j-bearmama New Member

    This info is of GREAT significance to our being recognized as persons with a REAL disease!

    I think we need to contact blood donar places etc and ask questions.
    Perhaps the RED CROSS can enlighten the medical folks who think "we look fine". (ARGG)

    It would also help ALL of us to get that recognition from society too.

    The interesting thing to me is...
    if there is a pathogen (or whatever it is)in our blood, THEN isn't it p ossible that it can be transmitted sexually to our spouses???

    I have been wondering this for some time. My husband is showing ALL the classic symptoms.

    My dr.s told me not to give blood because of my meds in my system. and also that donating could cause a flare.
    Were they apeasing me??? Were they ignorant of this new info??
    Have they known all along that we have "bad blood"?

    so much to think about.

    To Debbie, Oh your son is surely proud of his Mamma.
    It is such a selfless act to donate marrow. the pain to yourself is a lot to bear when donating. ( Esp with FM).
    From one mother to another, my heart goes out to you dear.

  9. LadyMT

    LadyMT New Member

    cuz I still want to hear what Madwolf has to say :)
  10. Mikie

    Mikie Moderator

    Could you please keep the titles to your posts to one line. When we use two lines in the titles, it causes someone else's post to roll over to Page 2 prematurely. Also, if you make your title more specific, it will help you to get more responses and help our members when they read posts. We all appreciate it. Thanks.

    Love, Mikie
  11. LadyMT

    LadyMT New Member

    Shorter title and more to the point :)


  12. lighthouselady

    lighthouselady New Member

    I donated bone marrow in 1993 to a German girl, we went through a lot of testing for several months. We finally did the bone marrow transplant from which I recovered very well. They told me later that she survived 5 months and then succumbed to a viral infection. I was heartbroken, I felt like I had lost part of myself and didn't even know her. I just took it as a rejection of my bone marrow. Now, I'm wondering, since I'm sure now that I've had FM for several more years than the 4 years diagnosis, if that had anything to do with the rejection. I would hate to think that I caused that to happen with this disease. I've often thought I would do it again if they asked but now, I couldn't do it. I just have to believe that it was a simple rejection.

  13. LadyMT

    LadyMT New Member

    It is wonderful that you had a chance to try to save a life. At least you had a chance to try. I think if it was a viral infection then it had nothing to do with the transplant. I'm not a medical person but I don't think there is much they can do for viral infections. Had it been a rejection to your marrow I think they would have called it something else.

    But remember this.... you gave her family an extra 5 months to spend with her! I'm sure they cherish those 5 months and are grateful to you.

    Love, Debbie
  14. Sislene

    Sislene New Member

    How can our blood be bad, when they cannot diagnose FM through the blood?
  15. sweeti8991

    sweeti8991 New Member

    a good point and no doctor will give you a straight answer to this
    I UK you cannot donate marrow, blood or organs if you have M.E/C.F.S.
  16. nickname

    nickname New Member

    I live in the UK, and my friend's husband is on a bone marrow donor list. He is currently a possible match, and was sent all the medical history forms to fill out. One of the questions, in addition to all the ones u might expect with ref to aids, hiv, tb, hepatitis etc, was "do u have, or have u ever had m.e?" Odd is'nt it that we are recognised as having a disease in this instance, but have to fight to gain any recognition in all other instances.
  17. LadyMT

    LadyMT New Member

  18. lighthouselady

    lighthouselady New Member

    I needed to hear that. Its been a while but I still get teary over it. And Madwolf, what you said helped too, that you'd rather be alive and be a fibromyte. I like that. I think we've still all got a lot to offer this world.

    Thanks, Judy