Discussion in 'Fibromyalgia Main Forum' started by Kathleen12, Aug 11, 2006.

  1. Kathleen12

    Kathleen12 New Member

    I was wondering how donating blood would affect my CFS.

    My sil just got dx with leukemia and is haveing a fundraiser in a couple of weeks. She is going to have the blood mobile there and I was kind of interested in donating but my husband said it would send me back into a flair if I am better by then. There is no way I could do it right now as I can hardly get off the couch.

    But has anyone donated before and how did it affect you?
  2. suzetal

    suzetal New Member

    She said that no is sure what causes FM or CFS (I have both) so they will not take a chance of passing it on.

    I am so sorry that your sister has leukemia.My prayers are with you and your sister.

    Maybe if you cant there is something else you can do to volunteer.

  3. darvick

    darvick New Member

    I did donate a few years ago, doc said ok, but I ended up with a 2 month long pnumonia that nearly killed me. I still wish I could cause im o+ universal and they need it.
    But never again

  4. Kathleen12

    Kathleen12 New Member

    Sadness, I have always wanted to be a regular blood donar but my husband really retaliated against the idea. So I just thought that he was using this new "disease" to strengthen his case. I too, am O+ and is highly desirable.

    I never thought that I'd be refused because of CFS and I do understand why. I just wondered if it would indeed cause me problems. And I never would have imagined that it could be a factor for pneumonia as was earlier stated. (Sorry that I do not remember names of posters).

    Thank you all for your replies and info.
  5. pam_d

    pam_d New Member

    I was dx'd with leukemia (AML) in March. I totally can appreciate what you are going through perhaps better than anyone else here, and your desire to help your SIL. It has been said by many here that CFS/FMers shouldn't donate blood products, so you probably are wise not to for everyone's health, including your own.

    Having said that, you probably have many good friends and family members who ARE healthy enough to donate---you can encourage them to donate; even if they aren't a blood match for your SIL, they will be helping someone else out.

    I, like all leukemia patients, log a lot of time in the hospital---on my way to my hospital, I pass our community blood bank, and I can never do so without my eyes welling up with tears---I am grateful for excellent oncologists, great nurses, good medical insurance, but most of all, I cannot survive in the aftermath of chemo without the generous donations of platelets and blood---as my blood counts plummet (by design, as the chemo has to kill all the good things to kill the cancer) I need transfusions of blood and platelets. Your SIL will need all this, too.

    I have been so desperate for another unit of platelets that the blood bank has called someone who matches me in that day to donate (platelets are more perishable than blood, so they don't keep a lot on hand)---I owe so much to folks who don't even know me, but are willing to leave work or come in from their day off at home just to donate to a stranger who needs it.

    Please don't feel guilty that YOU can't donate, but mention to friends, co-workers, family who are healthy, what a great gift this is for anyone with leukemia.

    And I wish the very best to your SIL, she is probably overwhelmed with the enormity of it all, as is her whole family, right now. I know, I've been there.

    Let me know if I can be of any best to all of you.


  6. zion1971

    zion1971 New Member

    for two major reasons

    1. i would not want to pass this on and i believe i acquired it through a transplant (or the transplant exacerbated the problem)

    2. i believe it would cause a flare. i know of many people who feel a little bad after donating blood and it seems to be an easy way for me to experience a flare.

    i too have a friend who needs blood donations. i can't give but i am organizing events so that others can. maybe you can volunteer to help with the event in other ways.

    i am O+ too. it is a shame.
  7. shelbo

    shelbo New Member

    of a cold sore once!
  8. IntuneJune

    IntuneJune New Member

    What a wonderful reply Pam, you are quite an inspiration!

    Love, June
  9. Mikie

    Mikie Moderator

    How might your blood affect whomever it goes to? Most blood banks will not accept blood from anyone with our illnesses. No one knows what causes our illnesses but chronic infections are very high among us. These stealth, chronic infections are not screened out. If the person needing the blood has mutated genes which might make him or her suseptible to our illnesses, it might set off our illnesses full blown. Research has already identified gene mutations in PWC.

    PWC may be able to fight off triggering events and stay relatively healthy and recover from trauma; however, trauma which involves blood transfusions could be just what might send someone over the fine line into chronic, devastating illness if infected blood is introduced.

    It is my opinion that wanting to donate blood, tissue, bone marrow, and organs is very noble, but it should not be done.

    I keep you and your family in my prayers and hope for healing for you SIL.

    Love, Mikie
    [This Message was Edited on 08/11/2006]
  10. Kathleen12

    Kathleen12 New Member

    You all have made some excellent points here. I never thought about the possibility of me passing this dreadful disease on to someone else! Thank you for enlightening me!

    Pam, as someone just previously stated, your story is truly inspiring. And you're is very painful and fearful for the family. Especially my husband as that is the only sibling he has. We don't know much about it yet, though. All anyone knows is that she has some kind of chronic leukemia and has to get anywhere from 2-4 pints of blood every few days. They want her to go through Chemo but she is unwilling right now and is hoping to go ahead and get a marrow transfusion. They just learned that she has an enlarged spleen today, so we don't know yet how that will be treated. Maybe a total removal.

    But thank you all again for the enlightenment. I will not donate but will encourage friends and family to. I hope that I will be physically able to help in other ways by that time.
  11. lightnerbride

    lightnerbride New Member

    You all bring up great reasons not to donate my main reason has always been, afraid of a flare-up. Technically by blood bank rules CFS & FM do not make you ineligible to donate blood unless your medications are a problem. However, it might be discouraged due to how you feel and not wanting to make yourself feel any worse. In the future they may find out enough about our diseases (not syndromes to me!) to have real reasons to exclude us from donating!
  12. ellie5320

    ellie5320 New Member

    I am in Australia and was a blood doner for many years I always felt extremely good after ( like a tonic) we have an add on tele here it says nothing about our DD lists a few things like tatoos in the last 12 months in the UK for a while pregnant or heart problems. Even after my thyroid opp (only have half left) they use the part of the blood platelets I think but I think the best thing is ask your dr as we are all different.
  13. pam_d

    pam_d New Member

    ...I should probably write to you under a different post than "donating blood", but just wanted to mention some points. If your SIL has CML (the chronic form of leukemia) that's different than mine, mine's AML, the acute form. There are currently some drugs used to treat CML that cannot be used for mine, and some new things on the horizon, too, so don't give up hope there!

    Encourage your husband (IF he's up to it after the initial shock has lessened) to learn everything he can about this disease---the Leukemia and Lymphoma Society is an excellent way to start, plus sites like I have found personally that I CAN'T myself do all of this---there's a certain natural instinstive response that makes us insulate ourselves against knowing TOO much, a self-protection instinct, if you will, and your SIL may feel this way. But that's where you or your husband can step in and research what she can't right now.

    My husband has made himself the expert of all time on my type of leukemia---he's checked into every new clinical trial on the horizon, has monitored the leukemia message boards for me, etc.---it's been invaluable for me, because these are the things that are just too overwhelming for me to do right now, but still need to be handled by someone close to the situation.

    I don't truly know what the differences are in protocol are between CML and AML, nor do I know your SIL's age or health BEFORE this dx, but I'm age 50 with pretty well-controlled FM in the past few years, and I'm happy to say that last night, I just finished my fourth and final round of high-dose chemotherapy after my initial induction chemo phase (this has taken me from mid-March until last evening) and I can honestly say that while no one would sign up for this for fun (!) it has not been as bad as I thought at all---other than much has to be done inpatient vs. other types of cancer. I can tell you that the worst part for me was that metallic chemo taste that does go away. With all the wonderful pre-treatment drugs they have now before they hook up the chemo, I never once experienced nausea, and I'm still waiting for the incredible fatigue---felt tired at times, but never the fatigue I thought I'd get.

    Of course we are certainly all very different, so my experience may not be hers by any means, just wanted her to realize chemotherapy has really improved, and while still challenging, isn't as daunting as in the past.

    I'm looking to go back to my job after Labor Day and have somewhat of a real life again! Of course, I'm not cured and there's a high likelihood I will relapse and need a stem cell (replacing the old bone marrow) transplant within a year or two. But I'm just grateful for every "normal" day I can get.

    I'm sorry to have taken up this thread with this, I know it is really about the advisability of donating blood, but if you ever need to anything, please write under another thread. There are a lot of resources out there both for families and the patient. I'll stop now, but I do wish all of you the best with this, I feel for what you are going through especially right now with the initial dx---no one ever prepares you for this one.

  14. bre_ann

    bre_ann New Member

    I have not asked my dr. but he has never told me I shouldn't. Maybe I will ask him the next time I see him. But, out of all the many questions they ask before you donate, they never ask about fibro/cfs so I figure it's okay. It never sends me into a flare by doing it so I continue to donate. However, with some of the meds I am taking now, they may say I can no longer donate.
  15. sandyblue

    sandyblue New Member

    I know how it feels because of my heart condition and other illnesses such as CFS/FM I cannot give blood. I used to give blood all the time when I was a FireFighter/EMT because I am one of the rarest blood types out there. While on the Fire Department we did alot of blood drives in our community to bring awareness to how valuble blood can be. I'm AB, it used to be RH was the rarest, but they say mine is now.

    I always wanted to give blood because I knew I was a safe person to donate. I've never done illegal drugs, never slept around and always did the right thing. Now I can't give blood to even save myself! I'm not sure if you guys know that you can pay a blood bank to keep your own blood in case you need it for yourself, but you can! Many people give blood a few months before surgery in case something happens and the blood is needed. It is the sure fire way to know that you are safe.

    All in all, seeing how many of you have posted to this does my heart good (no pun intended). I wish more people would realize how valuble there blood could be to someone who needs it.

    Take care and may God bless you all.
  16. shootingstar

    shootingstar New Member

    I would not even remotely consider potentially giving fm/cfs to anyone. The jury is out as to the cause of these syndromes and, until there is definitive proof that they can not be contracted through contaminated blood supplies, giving blood or organs is, for me, out of the question.

    Would any of you honestly want to give your blood to even your worst enemy if there were any potential whatsoever of giving them whatever you have? No way for me.
    [This Message was Edited on 08/13/2006]
  17. mrdad

    mrdad New Member

    Sorry about your sisters illness. One of the dozen or
    more things I think about concerning my illness was
    the Blood Transfusion I rec. few years back upon an
    operation. Next time I'll donate my own blood prior
    to the surgery. If they determine a viral source
    for these disorders, millions of people, I would
    think, are possibly waiting to become ill. A chilling

    I admire your devotion and concern!
  18. Mikie

    Mikie Moderator

    Until they realized how sick it made people and that it could be transmitted through blood transfusions. By then, many people were infected, including young children. Until we know more about our illnesses, it just makes sense not to take the chance of passing our illnesses on to already sick people.

    I could get paid for my plasma to make the gamma globulin for the Rh Neg. factor injections. Even though I could use the money, I wouldn't dream of doing it, even if they would take my donation. I wouldn't wish our illnesses on anyone. I think we really have to make responsible decisions until more is known. I am even careful around my grandson. I don't share glasses with him nor eating utensils and I wash my hands often around him. My infections aren't considered active and probably cannot be passed on with casual contact but giving blood is a whole different level.

    As I said before, I think it is very noble to want to donate but at this time, we might be serving our fellow human beings better by persuading others to donate. This question comes up periodically and the overwhelming concensus is usually that it is safer not to donate.

    Love, Mikie
  19. pam_d

    pam_d New Member

    ...I suggest reminding other, healthier relatives, co-workers and family members that the blood product donations are greatly appreciated by those who need them....if you have illnesses, DON'T donate yourself, but consider encouraging the healthy to.

    Someone suggested collecting one's own blood prior to a surgery....that's great if you can "plan ahead" for blood in that way. The majority of us who use blood and platelets could not have planned ahead. We depend on the generosity of others.

    I am a leukemic. There's no way I can pay back those who have given me blood products by donating blood myself---that's not an option. Instead, in September (once I have recovered fully from my final chemo round), I will be volunteering with my local Red Cross to assist at blood drives. I will pass out snacks, collect forms, make people comfortable, do whatever it is that I'm asked to do...and thank everyone sincerely for the amazing gift they are giving.

    I think we've established here that only healthy people should donate blood products, so those with FM, CFS and a host of other illnesses should not...but, again, some of us know healthy people who can pinch-hit for us, and there are always other ways to help.

  20. pam_d

    pam_d New Member