The procedure isn’t as scary as you’d think, involving a little light general anesthesia and a needle in your hip bone. I’d be happy to donate if I turn out to be a match for someone, though I’m sorry that I can’t do more for minority patients, who have an especially hard time finding donors.
I am a potential bone marrow donor as well. All I had to do was give them some blood. I imagine it was well analyzed. So if they need bone marrow, and the patient has blood that more or less matches mine, I would be called in for further testing to see if I was a good enough match. It’s been years since I got on the registry, haven’t ever been called, but I was told originally that the odds are against a non-blood relative being close enough. But it can happen and that’s why the registries exist.
Congratulations Nichol_storm! Let us know if you ever get called. How did you decide to do it? For me it was a couple at my church who’s daughter was dying of adult onset leukemia. It was too late for their daughter, but they wanted to get the word out about the registries.
I’ve been registered for many years, but never matched anyone yet. Everyone should register though – you can really save someone from a horrible disease
I actually heard about the site above on theSDMB. I had no idea just anyone could register – I thought only family members would be asked. I took one look at the site and immediately decided to sign up. Another good website is the National Marrow Donor Program.
I’ve been on the registry since 1988, as I mentioned in Spiff’s thread. I’m so pleased more Dopers are willing to donate!
Please consider donating platelets, too. Check at your local blood center. It’s a procedure that takes longer than donating blood (thus fewer people are willing to do it). The process, called pheresis, takes about two hours. Your blood is removed from one arm, spun in a centrafuge, where the platelets are removed, and the rest of the blood returned to you. I have 50 donatations since 1988, the year my father died while awaiting a bone-marrow transplant. While in treatment, he received numerous tranfusions of platelets, making the need very clear to me. Thank you, everyone, who is able to, and willing, to help others in vital need. And at very little discomfort to yourself, when you think about it!
I’d be happy to answer any questions anyone has about it, if I am able.
On the other end of things, I spent today learning how to do the DNA sequencing that’s used to type these things. It’s an interesting process. First there are a lot of serological tests to see if the two blood samples will cross react in any way. If a potential match passes all those tests, they’re sent for sequencing, where the histocompatability genes are sequenced - that is, they’re read base by base. Even one base pair mismatch, out of several hundred that are checked, can cause problems, so the reactions have to be done and the data analyzed with extreme care. The sequence is checked by at least four or five people independently, which takes about 10-15 minutes per patient, even with computers doing most of the work. It’s a very labor-intensive, and expensive, process, running over $1000 for the simplest version of the test.
I’ve gotten the paperwork but haven’t taken the plunge yet. In my area there is a $100 cost just for being typed and I can’t afford it right now.
Since I was adopted and don’t have any natural children, I don’t have any resource of “blood” relatives to draw upon should I ever need a bone marrow transplant. I would hope there is some kind soul out there that has registered that would be a match for me. That’s my motive to get on the registry so that maybe I can help someone else.
I ran into someone last night who’s been on the registry since she was 19 and hasn’t been called. I guess since you have to be an exact match to the potential recipient, the pool is limited considerably.
Bluesman and I have been registered since 1991. As others have said, it’s odd against ever being called, but we would both do it in a hot second if ever asked.
i registered sometime last year. they had a Base-wide volunteer sign-up, and it looked like a ton of people turned out to have a blood sample taken.
can i just say i’m glad that if you’re matched, extraction is something straightforward like a needle to the hipbone? my veins like to play hide-n-seek, which is why i gave up trying to donate blood. (you should have seen the incredible bruise that i got as a result of them just taking the blood sample!)
I know for donating blood and platelets, you have to pass a health screening which is why I cannot donate (I’m anemic).
Are there any sort of similar restrictions for bone marrow donors? I’d guess any sort of disease that compromises the immune system would rule a person out, but what about things like diabetes, anemia, and so on?
I feel obligated to comment on this thread in order to make a few clarifications.
First, there is unfortunately some confusion in the U.S. as to what bone marrow registry people have joined. As mentioned in another thread, I work for the National Marrow Donor Program (NMDP). The OP mentioned that she joined the American Bone Marrow Donor Registry (ABMDR).
In some sense, we are competing registries, but keep in mind that my organization, the NMDP, has 4,957,378 volunteer donors registered (March 31, 2003 figures). Soon, we will be able to say that we have more than five million volunteer donors.
The ABMDR, as of April 22, 2003, has 78,901 volunteer donors. At some point, they may be able to say that they have more than 100,000 volunteer donors.
The vast majority of transplant physicians search the NMDP’s registry. They will get a much, much bigger bang for their buck, so to speak.
So, please join the registry that you feel will be of most benefit to awaiting patients.
The NMDP is on very good terms with the ABMDR. There is no bad blood (pun intended) between us. Every few years, we invite the ABMDR to end the confusion and merge its list of donors with ours. So far, they have declined our request.
(P.S. If anyone wants to know why there are two “competing” bone marrow donor registries in the United States, I’d be glad to recount that story as I understand it.)
Now that I’d love to know. Seems self-defeating to have two of them. What if a patient needs marrow and there’s no match on the ABMDR? Do the doctors then just search the NMDP? Do they search them both at the same time? Does one get searched before the other? Heck, if they’re searching them simultaneously anyway, would merging them matter?
Rod Carew, the former Twins baseball great and Hall of Famer, had a daughter Michelle, that was dying of The Twins held a drive (Back then, I beleive it cost 70 or so dollars to enroll, the Twins footed the bill). I rounded up 8 friends and family and went down.
Sadly, Rod’s daughter died, mainly due to the fact that his family descent is mixed. The vast majority of volunteers are white. Of the hundreds I saw becoming volunteers that day, my buddy and one other person were the only minorities. It’s sad to see alot of self-righteous activism around, and see something like that that gets no attention.
Rod Carew remains a very eloquent spokesman for the National Marrow Donor Program, and he does what he can to encourage racial and ethnic minorities to join the registry.
We are hoping that Nelly will also be an effective spokesman for this effort.
Here’s the condensed version of the story as I know it. (I’ll make it quick ‘coz this is somewhat of a hijack, I think.) In the early 80s, doctors determined that unrelated transplants would work, so they set about looking for ways to collect lists of volunteers.
This led to many hospitals and blood banks around the country to gather such lists, and most lists started with platelet donors. These folks were already tissue typed (and they were known to be very altruistic, too). Well, it then became a logistical nightmare for a doctor in Seattle, for example, to find a donor for his/her patient needing a marrow transplant. That Seattle doctor would have to call dozens of little “mini registries” scattered around the country, dictating to them the tissue typing results of his/her patient and asking the registries to call back if they found a match in their lists of volunteers.
Well, the U.S. Congress wisely said that that was no way to do business and so in 1986 it appropriated $1.3 million to establish a national bone marrow donor registry, which eventually led to the National Marrow Donor Program (NMDP). One of the NMDP’s first tasks was to consolidate all the scattered registries into one national registry. The NMDP very quickly did so, with one major exception, the American Bone Marrow Donor Registry (ABMDR).
As those of you (like the OP) who have visited the ABMDR website already know, another name for the ABMDR is the Caitlin Raymond International Registry (CRIR). The CRIR was started sometime in the early 1980s by Joanne Raymond to find a matching bone marrow donor for her daughter Caitlin.
Unfortunately, Joanne Raymond’s efforts did not find a matched donor for Caitlin. It is my opinion that Joanne Raymond is unwilling to merge the CRIR with the NMDP because she believes that the continued existence of the CRIR is a memorial to her deceased daughter. I must reiterate that this last bit regarding Joanne Raymond’s motivations is pure speculation on my part and should not be thought of as an official viewpoint of my employer, the NMDP.**
I imagine that most transplant physicians in the U.S. search both registries, if only because they practice (as most docs do) “defensive medicine.” No transplant doctor would want to be sued for malpractice because s/he didn’t do everything possible to find a donor, and that would mean searching both registries at the very least. In other words, I think it’s a cover your arse kind of situation.
But I can say with certainty that among the transplant physicians who search both registries, they expect 95+ percent of their matches to be from the NMDP Registry.
I think it would be much more efficient to have the two registries merged. Not because it’s that difficult to start a search of both registries (only requires a fax or an e-mail with the pertinent patient information). But each registry has its own system in place, with all the attendant paperwork (and legal requirements!) to educate and test donors, secure the donations, transfer payment, and track the recipients.
Therefore, it requires a lot of training just to deal successfully and efficiently with one registry, and having to learn another registry’s system really seems like too much unnecessary work, IMHO. Plus, there’s the time factor. Many patients will die if they don’t find a donor quickly, so doing everything possible to make the search as efficient as possible seems to be the right thing to do.