Has anyone been a bone marrow donor? What would you do?

Parent Cafe
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<p>avoidingwork…yes, that is my opinion. Having seen up close and personally what this process actually looks like, and the hope that it gives to a family in dire, dire need, it’s the only conclusion I can come to. I wish I was unaware of just how heartwrenching this whole process is. But, I am not, and because of this our family chooses to be on the registry in the hopes of being “the one.” </p>

<p>My question to those who are on the registry and just aren’t sure (and there are plenty out there who are, for whatever reason, unsure what they would do if they got the call)…if you aren’t one hundred percent certain that you WILL donate, why register? It creates false hope for the patient. It costs money to tissue type each donor. It is a waste of everyone’s time, and can cost a patient valuable time that they may not be able to spare. Just know that prior to YOU being notified that you are a potential match, the patient and their family has been told the same news. They are waiting for YOU. Now imagine the patient being told that the donor changed his mind…despite being a match. Despite being on the registry. Heartbreaking. Something no one wants to picture happening to their loved one.</p>

<p>Bottom line…make the decision to join only after deciding that you will “be the match” for whomever needs your marrow. Then go home and wait to hit the lottery. Your odds of being chosen as a marrow match are about as good as winning the super lotto. </p>

<p>Need more reasons to donate…check out some of the caringbridge.org pages. If those don’t convince you to want to donate, I don’t know what would.</p>

<p>And please…if you were coerced into joining, or did so on a whim, do your homework. Not on this board, but with real docs who can give you the true picture of what donation entails. If after all that you are still not sure…I’d say remove yourself from the registry. It does no one any good for a person to be on the registry in name only.</p>

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<p>mimk6…
All good points. Of course we put family first, but the process of marrow donation is not something that will keep you down for weeks or even days. I’d say that you should perhaps talk to families whose young children have donated marrow in the a.m. and are playing quite contentedly in their siblings’ hospital rooms that same afternoon. Motrin is quite effective and the modern marrow aspiration techniques are a far cry from what Hollywood portrays it to be.</p>

<p>Can you tell I am a wee bit close to this topic? I am…saw it from the front row. Saw young kids who were told they had no hope, blossom and survive. Saw a young family, who was told their child would die a horrific death from a devastating metabolic disease, have something to cling to. A treatment made possible by a total stranger, who was willing to put his life on hold for a day in order to give life to another. It was beautiful, and inspiring. </p>

<p>I hope no one out there ever needs a marrow donor, because the odds aren’t that great of finding a match. If you or someone in your family needs a donor, I wish you the best in finding one. It is truly the gift of life.</p>

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<p>“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.”</p>

<p>Come on, all emotion aside - if it were completely 100% safe I wouldn’t be required to participate in an NIH study and sign a million consent forms in order to take it. All that said, I am willing to take whatever published risk exists in order to give someone the chance of a life, a few more years, an opportunity to say goodbye - whatever they get. Dreaming92 - thank you, your simple plea hit home for any parent on this board.</p>

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<p>

I also have to take issue with this statement. It certainly is not what I was told when I volunteered to be on the registry many years ago (probably about 25 years). At the time there was a call put out specifically for a young girl needing a donor – they were hoping that among families with a similar ethnic heritage they could find a match. As far as I knew I was volunteering my healthy young self as a potential donor for that particular girl. I understood that my name would remain on the registry… but certainly over the years circumstances change.</p>

<p>At the moment, I am in good health, so probably if someone were to call tomorrow and tell me I was a match… I probably would feel comfortable about being a donor. But I certainly wouldn’t want to feel that I was <em>obligated</em> because of a very small act of generosity made almost a quarter century ago. I’d have questions, and I’d to make a fully informed choice, based on my current status as a woman in my late 50’s and the current medical procedures involved.</p>

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<p>

Because no one can make a decision like that 10, 20, 30 years out. </p>

<p>The registry has made a decision of its own not to “expire” names. They could have set up some sort of system for renewal where they contact registrants at regular intervals – say, once every 3 years – to ask them to confirm whether they want to be on the registry – but I think it would be even more work and more costly for them to be continually updating records, and also having to retest people who were on the registry, opted out, and then wanted to come back. </p>

<p>

Given the large number of people on the registry and the fact that the registry makes no attempt to keep in touch with registrants, I am assuming that they often can’t even find registrants. I certainly haven’t been sending change of address reports to the registry all these years. I’ve moved, I’ve changed phone numbers, etc. The process has GOT to be to attempt to locate the registrant first and talk to them before a patient is ever told that there’s a “match”. Otherwise there would be even more heartbreak and frustration. Imagine being told “we’ve found a match, her name is Mary Smith and the last known address we have for her was in California, but we haven’t been able to find her yet. We’re busy trying to call everyone named Mary Smith in the country.” (And of course, maybe Mary Smith has gotten married and changed her name to Mary Jones instead). </p>

<p>There must also be names on the registry of people who have since died, or have contracted or exposed to diseases that would make them ineligible to donate – but may not even be aware that their condition prevents donating.</p>

<p>

That’s not true. Perhaps now that 25 years has elapsed since I signed, I get a call – and for whatever reason, I feel that I just can’t do it. But bone marrow matching is a familial, genetic thing – and I have a 28 year old son who was a baby when I joined the registry, and a 23 year old daughter who wasn’t born yet – and as far as I know, they are NOT on the registry (yet). (They could be, but let’s just assume for now that they aren’t). Maybe I can’t do it, but my daughter turns out to be a match. Maybe my younger brother is a match. I’m sure there are other long-term registrants who have even more close relatives than I do. </p>

<p>It seems to me to be very shortsighted to argue that someone who is unsure of whether they want to donate should not be on the registry. The smaller the registry, the less likelihood of finding a match. If a person is not on the registry at all, they will never be identified. If a person is on the registry, even if uncertain, then there is always the potential that they will donate and – as noted above – even if not that identifying them will lead to a donor. </p>

<p>I realize that this is a very emotional thing for you, but I really think that your position makes little sense. It would only result in fewer matches being identified. Maybe it is painful when a match has been found and the person refuses to give… but how is that better than never finding a match at all?</p>

<p>You’ve noted in a couple of posts that the procedure is portrayed in the media as being more painful or dangerous to the donor than it really is. It is very possible that a potential but squeamish donor simply needs reassurance to make the decision to give – but your position would mean that the donor would never be found.</p>

<p>I will tell you now – if I were told or believed that my name on the list meant that I had an <em>obligation</em> rather than a <em>choice</em>… I’d pull my name off right now – even though the odds are that I would choose to give if I were identified. I don’t think I would have consented to have my name placed on the list in the first place under those circumstances – even as a youngster I think I could have figured out that “forever” was a long time. You say you think it should be 100% commitment, but the world is full of people who might be comfortable with only a 90% commitment or an 80% commitment… are you really saying you want the registry to be that much smaller?</p>

<p>It is a very generous thing for any person to donate blood, bone marrow, or an organ to complete stranger. I know that you want to see lives saved – but to do so, you also need to treat the individuals who offer to be potential donors the respect they deserve, including the realization that they have the personal and moral right to ask questions about risks to their own health and to make an informed choice.</p>

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<p>Here’s a page that lists all the medical reasons why individuals may be disqualified from donating:
[Medical</a> Guidelines: When You Match a Patient](<a href=“http://www.marrow.org/DONOR/When_You_re_Contacted_as_a_Pos/Medical_Guidelines/index.html]Medical”>http://www.marrow.org/DONOR/When_You_re_Contacted_as_a_Pos/Medical_Guidelines/index.html)</p>

<p>Age
AIDS/HIV
Allergies
Arthritis
Asthma
Autoimmune Diseases
Back, Neck, Hip and Spine
Blood Pressure
Breathing Problems/Sleep Apnea
Cancer
Chemical Dependency/
Mental Health
Cold/Flu
Depression
Diabetes
Epilepsy
Heart Disease/Stroke
Hepatitis
Hospitalization/Surgery/
Trauma
Immunizations
Kidney Disease
Liver Disease
Lyme/Tick-Borne Disease
Medications
Organ or Tissue Transplant
Piercing (Body, Skin, Ear)
Pregnancy
Sexually Transmitted Diseases
Tattoos
Travel / Malaria
Tuberculosis
Weight</p>

<p>I also found this statement on the site:

</p>

<p>That suggests to me, that (a) the registry understands that people on the registry may not be willing to donate at the time they are contacted and (more important) (b) they can’t know whether the person is a match without additional testing – and obviously they need a medical workup to ensure that the person does not have any disqualifying condition. </p>

<p>I seriously doubt that the patient is even informed of a match until after the interview and first round of medical testing has been done. I mean, it makes no difference to the patient if the reason the donor can’t give is because she changes her mind, or because she’s pregnant, or has the flu, or had a recent piercing. All the registry can do is identify potential matches – there is a lot that can go wrong to knock things off track even after the match is identified.</p>

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<p>^^Common sense. Lives change, health issues change, circumstances change. Things can change in life within the blink of an eye for a patient, and the donor.</p>

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<p>The sense that I have gotten through this process is that the patients dr. is the person requesting further testing, additional blood samples etc. They are very careful to leave the actual patient out of the equation at all until you have been identified as a “best possible match” at which point I think they notify the patient that you exist as a donor and you get some very basic facts about the recipient/patient. All I know is that the recipient is a 47 year old man who does not live in this country, he has multiple myeloma and has already gone through an autologous bone marrow transplant (and I assume it wasn’t successful).</p>

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<p>My husband was on the registry for over a decade before getting the call that he looked like he was a match for a patient.</p>

<p>He was willing to donate and so excited…then when he went in for further testing/questionnaire, they thanked him and told him no.</p>

<p>Why? Back surgery from when he was a teenager. They said this particular surgery would exclude him from participating based on the collection technique. In recent years though, the way they collect the marrow is different and slightly more complicated than a blood donation. </p>

<p>He has been involved in getting donors for this wonderful organization and supposedly - if matched again - can now participate if called on.</p>

<p>It’s a really cool cause. There is a huge water polo tournament every fall in my area to honor of a young athlete who lost his battle. They raise money and try to get donors to Be the Match. It’s expensive to type each prospective patient. I urge everyone to take 10 minutes, fill out the questionnaire, get in the system - and make a donation to help this worthy cause. You never know when it might be you or your loved ones that will need this lifesaving procedure.</p>

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<p>From the NMDP web site-</p>

<p>“Another potential risk is associated with filgrastim (other names–neupogen, GCSF-granulocyte colony stimulating factor) injections. Though filgrastim is commonly used to treat cancer patients, the use of filgrastim in healthy donors is fairly new. Therefore, no data are yet available about the long-term safety. The NMDP began using filgrastim to aid in transplants in the 1990s. Since then, no NMDP donors have reported any long-term complications from filgrastim injections.”</p>

<p>I think it is smart to weigh the risks/benefits. The scientists now think that 5 days of GCSF injections before PBSC collection is safe long term, but it has only been done for 20 years so long term data is not available. Hence the reason they are asking you to participate in a study (to gather long term data).</p>

<p>Most collections are now done as PBSC (peripheral blood stem cell) rather than bone marrow harvests and the future looks to be movement towards cord blood infusions.</p>

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<p>calmom…
So many issues with your post…but here are a few that bug me.</p>

<p>When one signs up for the registry, the agreement is made that the potential donor is to keep address, phone, health disqualifiers current. If the registry is forced to chase down this information, valuable time and dollars better are being diverted from the real cause, which is of course getting people a match! I for one don’t want money spent on admin costs beyond what is absolutely necessary.</p>

<p>The registry does not release a donor’s name to the recipient during the donation process. </p>

<p>A person on the registry in name only does not do anything to save lives. Sorry. You’ve got to donate for good to be done. Your example of having familial connections doesn’t hold water. 25% of the time a familial match will be found, and that comes from the recipient’s own family. Your family may or may not have similar type-match properties. Or they may not. Again, YOUR marrow was the match. Not necessarily your daughter’s.</p>

<p>Your doubt that the patient is not notified until after the first round testing is done is incorrect. Getting a patient to transplant can take many weeks. Weeks which require intense therapy to wipe out their immune system with hard hitting drugs. While the two or three (hopefully) potential matches are being screened to find the BEST possible match, these steps proceed. Why? Because the patient doesn’t have the luxury of waiting. Waiting means an even lower prognosis of a good outcome. So, when you are called, yes, the patient is aware that a match has been found. Again, hopefully “matches”, and the best one “wins”, so even if you are called initially, you may not be the one to donate.</p>

<p>SamuraiLandShark…I think we know the same people. Glad to hear your husband can be on the registry.</p>

<p>Now, if you want to talk about real sacrifice, google Living Donor Kidney Donation…that makes the process of donating marrow, which the body replaces, pale in comparison. We’ve seen that too, and man does it make the decision to be on the registry an easy one for us.</p>

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<p>Last night I began to wonder if the registry had my current information, so I went to the marrow.org site and clicked on update. They probably had my address, but now they have my e-mail, cell phone, etc. and I got a confirmation e-mail thanking me for the update. I’d suggest everyone who gave long ago do the update as they say that e-mail is best for them. </p>

<p>Things can always go wrong with the simplest procedure and people have a right to pause for a moment and find out what current procedures entail when they get the call. A few months ago, my son gave blood and then his whole arm was bruised, he had numbness/tingling in his hand and a lot of pain and it went on for weeks. He’s okay now, but in the process I learned that, while rare, it’s possible to incur nerve damage if the needle nicks a nerve. Things can go wrong with the simplest thing. I once read an article regarding bone marrow donating about a person who almost died from the procedure and had long-term serious health issues as a result and, yes, I realize the procedure has changed, however, as someone pointed out, if there was no risk, there wouldn’t be pages of paperwork to sign.</p>

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<p>I WISH I could still donate. I signed up on the registry over 15 years ago. Recently I got a letter/postcard from them asking me to update my file - and lo and behold, I can no longer donate. Apparently if you take insulin for diabetes (either Type 1 or Type 2), you are no longer a suitable candidate. Rats.</p>

<p>I still don’t fully understand why I can’t give (I did call and talk to someone, but her response was more along the lines of “because you can’t.” Not much help.) I would give if I could. In a heartbeat.</p>

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<p>There are two main issues when determining if a potential donor is eligible to donate:</p>

<p>One–harm to the recipient of the product</p>

<p>does the donor have risk factors that increase the odds that their donation will cause harm to the recipient of the donation? ex: recent tattos, travel to a malaria country, men who have sex with men etc (transfer of a transfusion transmitted virus)?</p>

<p>Two–harm to the donor</p>

<p>does the donor have a medical condition that puts them at risk from donating? </p>

<p>Insulin dependent diabetics fall under this category. Being on an apheresis machine giving PBSC for many hours could cause trouble with the blood sugar and cause harm to the donor. I am not sure if there is a contra-indication of filgrastin in diabetics.</p>

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<p>

That wasn’t the case when I signed up in the early 80’s. There’s no easy way for me to tell on the registry site whether they even have my name on file, and I never heard anything from them since the time I had the blood test – not even a mailer requesting donations. So I wouldn’t know how to go about informing them of a change of address even if I wanted to. </p>

<p>Maybe they have changed their practices since then – -and for all I know, maybe they discarded my info years ago – but at least in my case, your assumption as to what I agreed to is entirely false.</p>

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<p>Calmom-</p>

<p><a href=“https://secure.marrow.org/CONTACT/ADDRESS/update_your_address.aspx[/url]”>Error;

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<p>To the OP – I’m a little unclear about the trial drug you will be taking if you decide to donate. One place I think you mentioned it increasing red blood cells (although it may have been someone else who mentioned that) and another place it is described as Neupogen. Neupogen increases white blood cell counts and is often given to chemotherapy patients to do just that. I took it while on chemo and now have chronically low white blood cell counts (on a scale where normal is 4-10 mine is between 3.5 and 3.8). The oncologist thinks it is a result of the chemo, but I think it is just as likely a result of the Neupogen. However, I have the right kinds of white blood cells and don’t seem to get sick very often, so it doesn’t appear to have a clinical affect. I would get the possible long term of the trial medication spelled out very clearly. There are medications that increase the red blood cell count, that are also used with chemo patients, but have recently been shown to cause more problems than they solved. </p>

<p>Even if your cells are a match, participating in a medical trial is a serious thing and you should understand completely what you are risking and the odds before you say yes.</p>

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<p>shellz, I just clicked on your link and learned that I can’t be in the registry (or, presumably, donate) because I’m over age 60. :(</p>

<p>There might have been other reasons I couldn’t donate – certain health conditions of mine – but I’m disappointed. I am an organ donor, but the chances of that every happening are slim as well. And if I were to donate an organ, I undoubtedly wouldn’t know about it!</p>

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<p>neupogen = filgrastim = granulocyte colony stimulating factor (G-CSF)</p>

<p>This medication increases the production of white blood cells in the bone marrow.</p>

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<p>Re post #36- (1) that “update” feature offers no way for me to verify that my name is already in the database – I don’t have any info they are asking for like donor ID # - so essentially that doesn’t have the basic functionality I would expect before providing personal info to anyone.</p>

<p>(2) Shellz, your posts have convinced me that if for any reason I am not already in the registry, I don’t want to sign up. (If I am, I’m easy enough to find if a staff member can use Google & linkedin. I have learned from the web site that all names are automatically removed when the person turns 61 – I am 57. So the question now becomes am I absolutely, irrevocably committed to being a donor in the next 3.5 years in case I am a match for someone. I would not commit to ANYTHING in my life under the idea that it was a binding promise made in advance of knowing the full facts. (look at all my posts railing against the ED process if you want my opinion on that sort of thing). And even if the registry doesn’t actually require that sort of advanced commitment, your posts have convinced me that if I were identified as a potential match, I am likely to run into some judgmental and disdainful staff member or volunteer who would dismiss my concerns and try to shame me into a decision I was uncomfortable with, possibly trying to minimize legitimate health concerns that I might have. (In other words, if I was identified as a potential match, I don’t want you to be the person on the other end of the line telling me what I am supposed to think and do.). </p>

<p>So I think you make a very poor ambassador for your cause. Your hostility toward the legitimate concerns expressed by a potential donor, known to be a match, has convinced another reader (and who knows how many lurkers) that the stuff on the web site about “the right to change your mind” is no guarantee against being shamed or bullied into making a difficult decision. You seem to think its better that there be no match in the system for a given patient rather than a match who may or may not be willing to give; I disagree but you’ve won the argument and driven me away. I hope that makes you happy.</p>