organ donor implications

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Oct 12, 2009.

  1. AuntTammie

    AuntTammie New Member

    I took my name off the organ donor registry after reading about XMRV.....that was not so much bc of XMRV itself, since we don't really know enough about it yet, but bc I started thinking that if there is any possibility whatsoever that giving someone my organs when I die could also give them ME/CFS, then there is no way I want to risk that

    of course that led to the thought that if I were terminal and in need of an organ, I would rather die than get an organ and ME/CFS along with it (if I didn't already have it, of course)....and that is a really sad statement and says so much about how hellish this illness is

    it also made me sad bc I always thought that even if I can't do much to help anyone during my life, at least I could help people when I die, and now I can't even do that
  2. nah.stacey

    nah.stacey Member

    I too have taken my name off the donor list. Well actually I was taken off by the Red Cross.

    If they hadn't done it I would have. No one wants to be sick forever and ever.
    In 2001 (before I was diagnosed with CFS/FM) I received a letter from the Red Cross telling me that I was forbidden to donate blood or organs from this point forward. Color me confused and yes scared. I couldn't understand what was wrong. I call the RC and asked them for an explanation. They couldn't give me an explanation I could understand other than something to do with the "Western Blot" test and T-cells coming up false/positive more than once. WHAT??????? They said if I ever tried to donate blood again it would be considered a Federal Offense. Sheeesh. No good deed goes unpunished.

    So there ya go. Maybe this XMRV will be the answer I am looking for. I'm not dead yet (unfortunately) so I guess I'll give it a shot.
  3. AuntTammie

    AuntTammie New Member

    a federal offense?! oh my gosh......that seems a bit extreme - when they mentioned a false/positive and T-cells were they somehow talking about HIV? And if it is FALSELY positive, then that means that it is negative so why on earth should that matter? so weird....and yeah, you try to do something nice and get that response - that's awful

    I do have to say, though that if this is in any way related to CFS (even though you were not yet diagnosed), then it would sure be another thing showing that this is not a mental illness (they would not classify someone with mental illness donating blood as a federal offense)
  4. AuntTammie

    AuntTammie New Member

    for some reason I didn't even think about removing my name when I heard about the recommendation not to give blood, but you're rt, that should have probably made me take my name off.....anyway, I am glad that I have not given blood or died and donated organs and spread this to anyone else....but it still makes me sad that I cannot help anyone in those ways
  5. FibroFay

    FibroFay New Member

    I can tell how important organ donation is to you. I'm so sorry.

    There are still ways you can help other people a lot. Instead of trading a car, you can donate your used car to a single mom. That would be a big thing! I've never done this, but I know some churches in my area encourage it.

    Or, you could help someone who is illiterate learn to read! (That's something you could do in your own home. A life-changing gift! (There are agencies in most areas that could help you connect with someone).

    You can change lives and give new beginnings even if you cannot donate organs. Let your imagination go wild and make a few phone calls.

    These are only ideas and not advice. I have no business telling anyone else what to do. I just wanted to reassure you that you can still make a huge difference! Please don't take it the wrong way.

    A Big Hug!
  6. karynwolfe

    karynwolfe New Member

    In response to not being able to give blood...THAT'S WHAT I DON'T UNDERSTAND.

    In the UK you're not allowed to give blood if you have M.E..........but yet they use every avenue available there to say that you have a mental disorder! Something is wrong with that picture!

    Like you said, people with mental disorders aren't prohibited from donating blood!

    "even if I can't do much to help anyone during my life"

    I guarantee you, you've helped a lot of people on this board alone, you do not need to worry about not being of help =)
  7. AuntTammie

    AuntTammie New Member

    Don't worry I did not take this the wrong way at is nice of you to try to give me ideas

    unfortunately the car thing is not even remotely possible.....I'm driving a nearly 13 y/o car (when I manage to drive) and am not in the financial shape to be able to buy another one even with a trade in, let alone w/o one.....I do think that it's cool that some people can do that, though

    and though I would love to be able to help someone learn to read, or do something else along those lines, I am just not functioning well enough to be able to do something like that, esp as often and as consistently as they would need

    sorry to shoot down your ideas, though.....I do truly appreciate that you are trying to's just that most all of the ways that I could help others require better, and more consistent, functioning than I am capable of rt now

    I have actually been talking with someone at my church about starting a chronic illness/pain ministry, and I am cautiously excited about it......I know it sounds crazy given how limited I am, but the church I go to is quite large and there is a possibility that we will be able to get it started in a slow and flexible manner, based on what I am capable of, and then hopefully as it grows, there will be a lot of others to do the majority of the hands on, regularly scheduled kinds of things, and I can contribute as much/little as I am able

    I haven't actually mentioned that on here yet, though, bc it is still in the VERY early stages of planning (and it has taken me 9 months to get this far), and I am really unsure how I am going to be able to manage it based on how limited I it may turn out to be a way that I can still help others, but it also may not.....and I still had really hoped to be able to do more good with my life (and I thought that at least the organ donation thing was a sure thing)

    still, I am still young and who knows, maybe there will be a cure or treatments someday....i am not giving up hope

  8. AuntTammie

    AuntTammie New Member

    you said:
    "In the UK you're not allowed to give blood if you have M.E..........but yet they use every avenue available there to say that you have a mental disorder! Something is wrong with that picture!"
    & I absolutely agree with you

    and as to what you said about me helping here, thanks, that made me feel good : )
  9. FibroFay

    FibroFay New Member

    That's exciting about your ideas for ministry at your church. I'm sure a pain ministry would be deeply appreciated. Take the time you need. God will bless you!

    My church has a prayer shawl ministry where ladies knit prayer shawls and give them to our sick members, shut-ins, terminally ill, etc. Somehow they've never thought to give me one though I'm on the list of homebound. I receive sonshine vists, cards, Christmas gift certificates, and such. But no prayer shawl. I've been deeply hurt by that, but I've never told them.

    I hope you have a good day.


    P.S. I drive a really old car also. Only drive to the doctor and the grocery store. I'm lucky to have that car and will probably never be able to buy another.
  10. AuntTammie

    AuntTammie New Member

    Thanks for the encouragement....and I am sorry to hear that your church somehow left you out of the prayer shawl ministry.....if you feel weird telling them that you are hurt, I would be happy to write or call and just gently say something (I can be very tactful and wouldn't even have to say how I found out about this)....I can't imagine that they intentionally left you out, but I can understand why you feel hurt
  11. FibroFay

    FibroFay New Member

    of you AuntTammie! I could never ask you to do that. But, it's nice of you to offer. I think maybe they just don't think I look "sick enough". The old Fibro story. Oh well, maybe someday they will think maybe I would like a prayer shawl. The ladies in charge of the ministry (deacon's wives) would feel terrible if they knew I was hurt. Best just leave things alone.

    You are kind, and I can see you would do well in some sort of ministry. It will happen for you. Keep the faith!

  12. AuntTammie

    AuntTammie New Member

    You are probably rt as to the reason why they haven't given you a prayer shawl, but I still feel bad for you that you have been left out.....hopefully they will become more aware somehow (though if you ever change your mind, the offer stands)

    and thanks again for the encouragement : )
  13. shelby11

    shelby11 New Member

    Exactly as i felt, when I read, because of my fibro I cannot donate, i thought this was the one thing I could do in life, especially since my husband has only 1 kidney and i thought I might be able to give him one some day. It stinks doesn't it? Meme
  14. gapsych

    gapsych New Member

    You can donate you body to science.

    I am not going to take my name off any donation registration as I think we are forming conclusions too soon.

    We patients have to be patient. Hard to do but may be worth the wait.

    Right now the last thing we need is overeacting and hysteria before we know the facts.

  15. nah.stacey

    nah.stacey Member

    It's not forming conclusions too soon. We are what we are, would you really wish this on someone else? Would you really take the risk of infecting someone with what you have?

    Those of us who have this DD are positive it's not mental, therefor it must be physical, which is the issue we have been fighting for years. Everyone of us has some sort of blood anomaly, something out of sync, some level too high or low.
    Donating your body to science is a great idea, but would you really put someone else at risk by giving them a tainted organ?

    No overreacting here, the Red Cross has already fobidden me with a nasty letter and a federal offense of I do donate. I know I don't have HIV or any herpes virius' lurking as I've been tested for everything under the sun (except XMRV) so go figure.

    We know what we know,
  16. AuntTammie

    AuntTammie New Member

    I am not hysterical and I know that it is too soon to form conclusions yet, but I do know for sure that this is physical (regardless of what they wind up concluding with XMRV - that was just a catalyst for me to re-think donating) and that there is a very real possibility that it could be spread via organ donation. There is no way I would ever want to give this to someone else.....let alone someone who is already dealing with bad enough health to need a new organ.

    Plus, it is not too soon to know that the UK forbids CFS patients from giving blood. If they (who still insist it is in our heads) feel that the risk is too high for us to give blood, then I would think that giving organs would potentially be as bad, or even worse.

    As to donating to science, I have considered that, & have not ruled it out, but for various reasons am not as likely to do so. (Don't have time to get into the reasons rt now - there are several, though.) And, did you know that "donating" your body to science requires paying a substantial fee? Kind of crazy.
  17. loto

    loto Member

    that's exactly what i'm doing when i pass on. I'm donating my body to research FM, if a cure hasn't been found by then. I've already told my family i'd rather do that than be underground rotting! I just need to have the paperwork done up all legal and stuff.

    And, I too think it's terrible that u can't donate blood, but people with mental disorders can. Isn't it kind of hypocritical or something? I just can't put into words what I'm thinking. How dare some doctors and some of the public think our conditions are mental disorders. Ha! let them live in our bodies for an hour or so!!

  18. FibroFay

    FibroFay New Member

    that if medical professionals themselves come down with these illnesses and experience them, then they would change their thinking about it being mental. There's no way my Fibro is all in my head. If I were a doctor I would certainly see that.

    AuntTammie, you have to pay to donate your body to science? That's interesting. Is it the fees to move the body, etc? How expensive is it?

    Have a good evening all.

  19. AuntTammie

    AuntTammie New Member

    I don't know exactly what the fees are used for. I just know that when I went to take my name off the organ donor list, there was info on the site that talked about donating your body for science, and it went on to say that they were offering the cheapest cost to donate at $495. I would have dismissed it as just an advertisement (and therefor not necessarily that truthful), but it was on the state's official site. Obviously, if I were to decide to do this, I would get more info.
  20. AuntTammie

    AuntTammie New Member

    sorry I haven't responded directly to everyone's posts.....I have read them and do appreciate the responses, but have been posting way more this week than I can really physically tolerate (the computer screen makes me sick after too long) I am trying to cut back a bit