<p>After 22 years in the registry, I have been identified as a match. I have my 3 hour physical exam next week and then we will do the Peripheral Blood Stem Cell donation by apheresis. Its less invasive than the traditional procedure of taking actual marrow under general anesthesia but still a little scary. The drug they give you for five days to stimulate your production of stem cells is FDA approved for cancer patients but not for healthy patients (there is a study that they also want me to participate in). My husband feels strongly that it is too risky and I could be putting my long term health at risk. I feel like it is a once in a lifetime opportunity to potentially save someone’s life. What would you do?</p>
<p>Not sure what your husband thinks the long term effects of this are. I also donated my stem cells through apheresis for my sister, who was going through a stem cell transplant.</p>
<p>I also had the shots and they do cause a little pain, but nothing a little motrin didn’t take care of.</p>
<p>The exam was no problem except they took 26 vials of blood! Also did a chest x-ray, an EKG, and a once over.</p>
<p>The actual apheresis process was interesting. I think the most uncomfortable parts were the warm blood being put back in and I evidently had low calcium, so I had tingly lips and limbs for awhile.</p>
<p>I would do it again in a heartbeat if asked to help save someone else’s life.</p>
<p>well I guess the fact that Neupogen is not an FDA approved drug for healthy patients.</p>
<p>I would do it! I have also been registered for > 20 years. They called me twice to say that I was in the final group being checked for compatibility and they wanted to make sure I would still do it, but never heard back either time. </p>
<p>If the drug is ok for cancer patients it seems like it would be even safer for non-cancer patients. I’d ask some questions, but I think I would do it.</p>
<p>I’m also on the registry. I’d like to think that I would weigh the potential long-term risks to myself against the immediate risk to the other patient. I’d also note that anytime you take a drug that’s been around for less than 50 years or so, you’re risking long-term side effects. Any drug, even when FDA approved, carries risks that may not have been identified until they’ve done multi-decade longitudinal studies.</p>
<p>Would you have undergone the surgery if apheresis were not available? Surgery & general anesthesia have more likely risks than the drug.</p>
<p>I’d like to think that the risks to myself, unknown & unquantifiable (and they may be zero), would not outweigh the immediate opportunity to save a life.</p>
<p>I didn’t ask about the long term effects of the shot since it was my sister’s life that I was trying to save because I would have taken the chance anyway. It’s been a couple of years now and so far no effects from it.</p>
<p>But, if you are concerned, please ask the doctors to see how safe they think it is. Don’t turn down this opportunity without asking about the safety because you never know who’s life you could be saving.</p>
<p>You are the one person walking the planet that can give this mom, dad, sister, brother, etc, another birthday!</p>
<p>The risks should have been explained to you prior to joining the registry. The family who got the good news that a match was found is waiting for you to be a hero and offer hope to their critically ill loved one.</p>
<p>Having worked many marrow drives I can tell you how tempting it is to gloss over the “painful part” of the spiel, but this is what can happen when you do. It’s not a perfect process, but those I have been privy to (both apheresis and needle aspiration) have gone well and helped give HOPE to desperate families.</p>
<p>Bottom line is, someone is waiting for you to save their life. Think long and hard about it. And then do it.</p>
<p>What would you and your husband say to a person who had these questions about donating to your child? Follow THAT advice.</p>
<p>I have every intention of doing it, but to your point shellz when I signed up in 1990 they did not have this type of donation. I’m just doing my own personal due diligence and seeking input and opinions. I don’t think that it reflects poorly on anyone to do that (in your words “shame” on the mother of three who doesn’t ask all the necessary questions!). Reading the 25 plus pages from NIH about the potential risks of the medication is just a little bit scary, y’know?</p>
<p>I know that if my family was not COMPLETELY on board, I would not do it. I would definitely do it if I only had myself to consider. Everything has risks. I would want my family to understand ALL of the risks and give an informed blessing for me to go ahead with it. If they were not comfortable with it, I would need to decline, as harsh as that sounds to the family of the ill patient.</p>
<p>You have EVERY right for a doctor to sit with you and your family for as long as it takes, to explain all risks and what you will need to go through. I would call them and tell them that I could not agree to this without my family meeting with a doctor who will have the patience to explain everything to me and my family. I would let them know that I would not sign or agree to anything that day.</p>
<p>Will you be doing this at NIH?</p>
<p>The NMDP has a good website and can probably answer many of your questions.</p>
<p>I will be doing all of it at NIH (I guess because of the study).</p>
<p>Does participation in the study involve additional risk that you could skip and still be able to donate?</p>
<p>The study is for the safety of neupogen, if I don’t want to participate I can’t take the drug. I guess I could still do it the traditional (surgical) way. Of course there are risks associated with that too…</p>
<p>Please please please please donate. My mother received a bone marrow transplant of this kind in the summer and this week received scan results showing absolutely no sign of disease. Perhaps next year my mother will be able to move me into my dorm when I start school, and meet the friends I’ve been raving about. Please donate.</p>
<p>I would tell my husband that I definitely want to do this – that if it was he, or my child. or another loved one who needed a transplant, I would be praying that someone who was a match would step forward and donate. How blessed you are to have the opportunity to provide a miracle for someone.</p>
<p>I can’t answer your question but I can tell you about our experience.</p>
<p>About 20 years ago, my husband was a match. He was one of the first bone marrow donors.</p>
<p>He did donate (BTW, it was very painful. He’s one to tough out pain, but this was more than even he expected. Don’t know if this has changed in 20 years. He was feeling back to his old self within a few days.) The patient relapsed and he was asked to donate a second time. By this time, we had a second child so the stakes were higher for us. After a time of reflection, he decided to say no. The patient eventually did not make it. </p>
<p>Did he do the right thing in saying no the second time (would a second donation have helped)? We’ll never know. It’s quite possible that she was just too sick to be helped and he simply gave her family more time with her. </p>
<p>But it can not be glossed over that there is a risk to you. Aside from drug interactions/effects, anytime you are in a hospital for a procedure you risk picking up some germs. And not all germs are curable. We risked it once but not a second time.</p>
<p>3byzmom…
You misunderstood the comment I subsequently deleted about “shame”…the shame is on the person who signed you up for the registry WITHOUT giving you the full spiel. Once a person is on the registry, in MY opinion, you have PROMISED to donate. Unless, of course, you are too ill at time of need. This doesn’t seem to be the case. I understand the due diligence given that this is a “new” procedure. I just hope you speak with those in the know and that they can assure you that taking this medication to stimulate red blood cell production is safe, and a non-issue. I really hope for this, as someone’s life hangs in the balance. If, after all this you still object, please remove yourself from the registry…the heartbreak of saying no to a family whose sole hope lies in your donation is too awful to comprehend.</p>
<p>And as for choosing which method of donation…nope. You, as a donor have zero input. The decision for which method to be used for any particular donation is based upon patient need, not donor preference.</p>
<p>This is a very personal decision, and for those who choose not to be part of the registry, I hope you never are in the position to need a non-familial donor. The odds or a white person getting a match are slim…the odds are even worse for those of african-american, hispanic or asian descent. The sooner folks realize how HORRIBLY Hollywood has portrayed this process (Think Will Smith in 7 pounds opting to donate w/o anesthesia…totally bogus and would never happen) and how little tiny children donate for their ill siblings without any lasting effect (and any effect is mitigated by motrin!), the sooner we will get the necessary participation to ensure everyone getting the match they may someday need. </p>
<p>God Bless those who give this precious gift! And for those on the fence, check out marrow.org’s website. It has the answers to just about any question you might have about the process of donating marrow.</p>
<p>Shellz, while your opinion may be that being on the registry is a promise to donate. That is not what is communicated by the bone marrow registry. The following is from the bone marrow registry site:</p>
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<p>Someone has already shown that this is not the case from the Registry’s site, but I also think that even if the Registry did not say that, it would not be the case. I’ve been on the list for many, many years. I was young when I got on the list. I’d still donate now, but what if I’d gotten the call when my husband was in the hospital? What if I got it at some key juncture point in one of my children’s lives? What if someone really needed me that particular month? Maybe there are season’s in one’s life when you have to put family first and other seasons when you can put a stranger first. I stay on the registry because, most of the time, I think I could and would donate.</p>
<p>I find it hard to believe that the Registry notifies a family that there is a match before they have confirmed that the person will donate. I can’t believe they would do that and create that kind of heartbreak. I imagine they get at least a verbal agreement before they notify a patient.</p>