blood from a stone June 18, 2009 2:48 PM Subscribe
In this AskMe thread about leukaemia, scblackman had a great idea. Could we "leverag[e] the MetaFilter community to do a virtual bone marrow drive?"
From his/her post: Set up a page with links to various countries marrow registries, and/or places to sign up. Set up some type of "I signed up" button to help keep track ... get the mods to put something on the sidebar ... maybe a MetaFilter Meetup at the local blood bank? Anyone want to try to move this forward? I'd be happy to help.
As getting onto the bone marrow register is something that lots of people mean to do but somehow never get around to, I think a registration drive is a wonderful idea. What do you fine folks think?
In the UK, the Anthony Nolan Trust has an open invitation for people to host a recruitment clinic. I'll phone them for more details tomorrow. Elsewhere in the world, the pledged members could arrange to attend an ordinary clinic together and have celebratory cake. Or perhaps blood pudding. I know it costs money in the USA but it's occasionally free (right now, for example) and often subsidised. I volunteer to help organise anything we can get off the ground online or in London, UK.
Recent threads have popped up in the sidebar saying that this community has saved its members vast amounts of money and time. By getting more people onto the woefully underpopulated donor registers, maybe we could add "saving lives" to that list?
NB: I've posted this without input from scblackman, so if this is a good idea the credit goes to him/her; of course, if it's a bad post for the Grey then the blame is entirely mine.
From his/her post: Set up a page with links to various countries marrow registries, and/or places to sign up. Set up some type of "I signed up" button to help keep track ... get the mods to put something on the sidebar ... maybe a MetaFilter Meetup at the local blood bank? Anyone want to try to move this forward? I'd be happy to help.
As getting onto the bone marrow register is something that lots of people mean to do but somehow never get around to, I think a registration drive is a wonderful idea. What do you fine folks think?
In the UK, the Anthony Nolan Trust has an open invitation for people to host a recruitment clinic. I'll phone them for more details tomorrow. Elsewhere in the world, the pledged members could arrange to attend an ordinary clinic together and have celebratory cake. Or perhaps blood pudding. I know it costs money in the USA but it's occasionally free (right now, for example) and often subsidised. I volunteer to help organise anything we can get off the ground online or in London, UK.
Recent threads have popped up in the sidebar saying that this community has saved its members vast amounts of money and time. By getting more people onto the woefully underpopulated donor registers, maybe we could add "saving lives" to that list?
NB: I've posted this without input from scblackman, so if this is a good idea the credit goes to him/her; of course, if it's a bad post for the Grey then the blame is entirely mine.
Christ, a pint of bone marrow?!
posted by shakespeherian at 3:02 PM on June 18, 2009
posted by shakespeherian at 3:02 PM on June 18, 2009
Yeah the rules here in Japan are super super strict - I can't donate because I had a tattoo 17 years ago.... but it's a fab idea.
posted by gomichild at 3:04 PM on June 18, 2009
posted by gomichild at 3:04 PM on June 18, 2009
"Christ, a pint of bone marrow?!"
Hehe, that'd sting a bit! These days their first port of call is stem cells, which they can extract from your blood. The modern procedure is nothing to worry about.
posted by metaBugs at 3:09 PM on June 18, 2009
Hehe, that'd sting a bit! These days their first port of call is stem cells, which they can extract from your blood. The modern procedure is nothing to worry about.
posted by metaBugs at 3:09 PM on June 18, 2009
You have to pay to be on the marrow list? Talk about a backwards incentive.
I came very close this spring to donating my marrow - I missed the window because I wasn't sure if I was about to be starting SSRIs, and they found someone else. It's too bad, because I'm curious about the procedure and the pain involved. I hear bad things.
dirtynumbangelboy, if the situation comes up and I make it all the way through, I will specifically tell the doctors/recipients that I am doing it for you. Although I can't promise that I won't mistakenly call you dirty numb and bengal boy, because it seems that's what I read it as.
posted by Lemurrhea at 3:16 PM on June 18, 2009 [2 favorites]
I came very close this spring to donating my marrow - I missed the window because I wasn't sure if I was about to be starting SSRIs, and they found someone else. It's too bad, because I'm curious about the procedure and the pain involved. I hear bad things.
dirtynumbangelboy, if the situation comes up and I make it all the way through, I will specifically tell the doctors/recipients that I am doing it for you. Although I can't promise that I won't mistakenly call you dirty numb and bengal boy, because it seems that's what I read it as.
posted by Lemurrhea at 3:16 PM on June 18, 2009 [2 favorites]
I just signed up. To any USians, signup is free for four more days.
posted by jessamyn (staff) at 3:22 PM on June 18, 2009
posted by jessamyn (staff) at 3:22 PM on June 18, 2009
As usual, for Canadians, I believe it is always FREE.
Does joining OneMatch cost me anything?
No. Joining OneMatch is free and you won't be charged for any part of the testing or donation process.
What will it cost me to be a donor?
OneMatch will reimburse expenses you incur as a result of donating stem cells. For example, if you have to go to another city for the collection procedure, we cover travel and accommodation costs for you and a companion. While the procedure and subsequent recovery will take you away from work for a short time, experience has shown that most employers are willing to give sick time or paid leave to stem cell donors.
posted by gman at 3:31 PM on June 18, 2009
Does joining OneMatch cost me anything?
No. Joining OneMatch is free and you won't be charged for any part of the testing or donation process.
What will it cost me to be a donor?
OneMatch will reimburse expenses you incur as a result of donating stem cells. For example, if you have to go to another city for the collection procedure, we cover travel and accommodation costs for you and a companion. While the procedure and subsequent recovery will take you away from work for a short time, experience has shown that most employers are willing to give sick time or paid leave to stem cell donors.
posted by gman at 3:31 PM on June 18, 2009
At the risk of provoking scblackman into taking out a restraining order against me:
"FWIW, I emailed the mods and they said that if we put together a website to point MeFites to blood banks for entry into the bone marrow registry, and a way to track it, etc etc, that they'd put it on the sidebar and MeTa.
Any web-savvy volunteers with a little extra server space interested in helping build/host such a site? Something like the MeFi Fitness Challenge .... but with registering for being a marrow donor."
Any volunteers? I secretly fear computers, and so will be useless for this task.
posted by metaBugs at 3:34 PM on June 18, 2009
"FWIW, I emailed the mods and they said that if we put together a website to point MeFites to blood banks for entry into the bone marrow registry, and a way to track it, etc etc, that they'd put it on the sidebar and MeTa.
Any web-savvy volunteers with a little extra server space interested in helping build/host such a site? Something like the MeFi Fitness Challenge .... but with registering for being a marrow donor."
Any volunteers? I secretly fear computers, and so will be useless for this task.
posted by metaBugs at 3:34 PM on June 18, 2009
Coincidentally, I signed up last week when the free sign-up started. Got my kit in the mail this week and sent back my cheek swabs today. I hope litterateur is able to find a match if she needs a transplant. Also, I believe the registry is particularly in need of people of color/mixed race and other less common ethnic profiles. If any of you fit that demographic and are on the fence, please consider signing up. It's simple and painless to be added to the registry, and you can always opt-out if you have some circumstances that change and that prevent you from actually donating.
posted by booknerd at 3:46 PM on June 18, 2009
posted by booknerd at 3:46 PM on June 18, 2009
For the US bone marrow registry, it is unclear as to whether gay male sex will be an automatic deferral. From these guidelines:
posted by muddgirl at 3:47 PM on June 18, 2009 [1 favorite]
If you have been diagnosed with HIV (AIDS) you cannot register to become a potential volunteer donor listed on the Be The Match Registry. If you are at significant risk for the HIV/AIDS virus, you may not be allowed to register for a certain period of time. Contact your local donor center or contact us at 1 (800) MARROW2 (1-800-627-7692) to learn more about medical guidelines for persons who are at risk for the HIV/AIDS virus.Note that females who engage in lesbian sex have always been allowed to donate blood and tissue in the US. So to say that "any MeFi members of the Pink Mafia are not allowed to donate any blood or tissue products, period" is, well, wrong.
posted by muddgirl at 3:47 PM on June 18, 2009 [1 favorite]
Lemurrhea, I looked at the guidelines and they don't seem to exclude SSRIs. At least, I hope not, since they've been a part of my life for some 15 years.
I want to thank the people who put the links in the AskMe post, especially the freebie link. I just registered. I have always wanted to register, ever since a good friend of mine suffered from chronic AND acute leukemia (if I understood his wife correctly) and died because he could not find a donor. As he was from the Ivory Coast, I was told I might as well not try to be a donor for him as I am 7/8 white, 1/8 Cree and Ojibwa (and not talented in math, so if that's an impossible combo, bear with me, it's close enough). I realized that I could, however, be a donor for someone else. After reading an article about how few mixed-race donors there are, I am going to beg my husband (who is half Chinese) to join the registry as well.
posted by lleachie at 3:47 PM on June 18, 2009
I want to thank the people who put the links in the AskMe post, especially the freebie link. I just registered. I have always wanted to register, ever since a good friend of mine suffered from chronic AND acute leukemia (if I understood his wife correctly) and died because he could not find a donor. As he was from the Ivory Coast, I was told I might as well not try to be a donor for him as I am 7/8 white, 1/8 Cree and Ojibwa (and not talented in math, so if that's an impossible combo, bear with me, it's close enough). I realized that I could, however, be a donor for someone else. After reading an article about how few mixed-race donors there are, I am going to beg my husband (who is half Chinese) to join the registry as well.
posted by lleachie at 3:47 PM on June 18, 2009
PS: I'll donate my pint for you as well, DNAB, if you're okay with having a (theoretical) breeder as a surrogate :) (I almost said, "I will if you marry me first", but as I already have one spouse in real life and three on Metafilter and that developing meme is in another notestring on the grey...naaah.)
posted by lleachie at 3:52 PM on June 18, 2009
posted by lleachie at 3:52 PM on June 18, 2009
I signed up years and years ago, as part of a drive while I was in college. This is a good reminder to update my contact information, though.
posted by craichead at 3:53 PM on June 18, 2009
posted by craichead at 3:53 PM on June 18, 2009
At the risk of provoking scblackman into taking out a restraining order against me
Not that this isn't a noble cause, but I want to stress that reprinting people's email or MeMail without the explicit okay is generally speaking a bannable offense. Would you please check with scblackman that this is okay with him?
posted by jessamyn (staff) at 3:53 PM on June 18, 2009
Not that this isn't a noble cause, but I want to stress that reprinting people's email or MeMail without the explicit okay is generally speaking a bannable offense. Would you please check with scblackman that this is okay with him?
posted by jessamyn (staff) at 3:53 PM on June 18, 2009
lleachie, you're certainly correct that they don't exclude SSRIs, but since I would have just been going on them at the time of donation, and donation can be rather emotionally trying, and SSRIs supposedly take a few months to make sure they're working, my contact at Onematch deferred me (rightly), and in the intermission, someone else was found. So not the meds, but the change in such.
posted by Lemurrhea at 3:53 PM on June 18, 2009
posted by Lemurrhea at 3:53 PM on June 18, 2009
Thank you in advance. I am a strong believer that things happen for a reason. If I have relapsed, or this is just a scare (Please, God, let it be the latter), I know it has helped to compell people to make a life-affecting decision for others who are battling this horrible disease.
Wow. I sound like a Hallmark movie endcap. But I am no less sincere. Thank you.
posted by litterateur at 3:54 PM on June 18, 2009 [1 favorite]
Wow. I sound like a Hallmark movie endcap. But I am no less sincere. Thank you.
posted by litterateur at 3:54 PM on June 18, 2009 [1 favorite]
FWIW, jessamyn, that was actually a quote from a comment scblackman make in the AskMe thread. Quoting from other parts of the site that are public is presumably kosher, right?
posted by booknerd at 4:03 PM on June 18, 2009
posted by booknerd at 4:03 PM on June 18, 2009
Oh, thanks for clarifying, Lemurrhea. I was afraid for a minute that I might have missed something somewhere. I could see why that was not something you were willing to do at that time, especially when I remember one or two of the disasters I encountered when my SSRI would finally quit working and the doc and I had to trial-and-error a new one. I think donating when I was getting paranoid delusions on the Celexa might have been, oh, a bad idea?
posted by lleachie at 4:04 PM on June 18, 2009
posted by lleachie at 4:04 PM on June 18, 2009
I can't donate marrow due to a medical condition, but I'll give virtual bone marrow and lots of hugs to anyone who wants 'em!
posted by grapefruitmoon at 4:23 PM on June 18, 2009
posted by grapefruitmoon at 4:23 PM on June 18, 2009
FWIW, jessamyn, that was actually a quote from a comment scblackman make in the AskMe thread.
Ack sorry, too much chlorine in my eyes. Carry on.
posted by jessamyn (staff) at 4:29 PM on June 18, 2009
Ack sorry, too much chlorine in my eyes. Carry on.
posted by jessamyn (staff) at 4:29 PM on June 18, 2009
Wow! Great back-and-forth on this. Basically, after reading litterateur's AskMe and thread that followed, it made sense to try to leverage MeFi in some small way to at least spread the word. Since people may miss this MeTa or the AskMe thread that lead to it, I was thinking that it would be pretty simple to do a little "MeFite Marrow" resource page that had 1.) a blurb why you should register for the registry and what it has to do with MeFi; 2.) links to US and international marrow registries; 3.) a box you can fill in when you've registered (or if you're already registered), so that we can see how many folks sign up, and then throw it up there as a little incentivizer. Nothing fancy. Just a way to throw a few dozen or few hundred more haplotyhpes into the pool of prospective donors.
As for some of the comments here (and I speak to these as a pediatric oncologist who has done some transplant along the way):
- Registering is easy. It used to be a blood draw, now it's just as often a cheek swab to do molecular typing
- Yes, in some places you have to pay. It does cost $$ to run the test. It's ridiculous that the system is set up like this, but the National Marrow Donor Program is a not-for-profit, non-government entity, and eventually someone has to keep the PCR machines going. A former patient's dad successfully lobbied the state of Vermont (either that or New Hampshire .... can't remember) to cover marrow testing. But for the rest of the states, it can occasionally cost money. The link to the NMDP drive that jessamyn mentioned was great, and I'd encourage people to sign up ASAP.
- Yes, there are certain restrictions, but once you think about it, it makes sense. You put these hematopoietic (blood-forming) stem cells into profoundly immunosuppressed people. So you really need to be in pretty good health (from an infectious disease perspective) to be a donor.
- Donating is not mandatory if you're on the registry. If you're not up to it, or have a change of heart, that's up to you.
- Donating is not easy. You may get called if your name/type comes up in an initial screen. At that point you'd be called and asked to provide blood for additional testing. If you're selected after that you'd need to undergo a pretty extensive medical evaluation (paid for, of course, by the NMDP, and ultimately the recipient). Depending on what disease the recipient has, you may be asked to give real marrow (obtained under anesthesia from the hip bone). The amount taken depends on the size of the recipient. Yes, sometimes it can be up to 1 liter. You make it back pretty easily. Other people can make due with PBMCs (peripheral blood mononuclear cells), which are basically blood stem cells that are forced into circulation under the influence of injections of the growth factor G-CSF (granulocyte-colony stimulating factor) and collected by an apheresis machine which separates the PBMCs from the rest of the blood in a process similar to donating platelets.
- Yes, sometimes you can meet the recipient ... rules vary based on country. One of my transplant patients met their donor face-to-face (he was, at the time, 2 years old). The parents of one of my patients who didn't survive connected with her donor to reassure them that their daughter's leukemia was cured by the transplant and that she succumbed, instead, to unusual complications from transplant. In both cases, all parties, I'm told, found this type of connection to be extremely gratifying.
In any case (if you're still reading this), it doesn't have to be a big deal. I'd be happy to help if there was someone with the computer skills necessary to whip up a quick site. We could build it up with a little marr-o-meter (get it? Marrow Meter!) to show how many MeFites register. Anyhow, interested people can MeMail me at their leisure, or directly e-mail me at the address in my profile.
posted by scblackman at 4:48 PM on June 18, 2009 [5 favorites]
As for some of the comments here (and I speak to these as a pediatric oncologist who has done some transplant along the way):
- Registering is easy. It used to be a blood draw, now it's just as often a cheek swab to do molecular typing
- Yes, in some places you have to pay. It does cost $$ to run the test. It's ridiculous that the system is set up like this, but the National Marrow Donor Program is a not-for-profit, non-government entity, and eventually someone has to keep the PCR machines going. A former patient's dad successfully lobbied the state of Vermont (either that or New Hampshire .... can't remember) to cover marrow testing. But for the rest of the states, it can occasionally cost money. The link to the NMDP drive that jessamyn mentioned was great, and I'd encourage people to sign up ASAP.
- Yes, there are certain restrictions, but once you think about it, it makes sense. You put these hematopoietic (blood-forming) stem cells into profoundly immunosuppressed people. So you really need to be in pretty good health (from an infectious disease perspective) to be a donor.
- Donating is not mandatory if you're on the registry. If you're not up to it, or have a change of heart, that's up to you.
- Donating is not easy. You may get called if your name/type comes up in an initial screen. At that point you'd be called and asked to provide blood for additional testing. If you're selected after that you'd need to undergo a pretty extensive medical evaluation (paid for, of course, by the NMDP, and ultimately the recipient). Depending on what disease the recipient has, you may be asked to give real marrow (obtained under anesthesia from the hip bone). The amount taken depends on the size of the recipient. Yes, sometimes it can be up to 1 liter. You make it back pretty easily. Other people can make due with PBMCs (peripheral blood mononuclear cells), which are basically blood stem cells that are forced into circulation under the influence of injections of the growth factor G-CSF (granulocyte-colony stimulating factor) and collected by an apheresis machine which separates the PBMCs from the rest of the blood in a process similar to donating platelets.
- Yes, sometimes you can meet the recipient ... rules vary based on country. One of my transplant patients met their donor face-to-face (he was, at the time, 2 years old). The parents of one of my patients who didn't survive connected with her donor to reassure them that their daughter's leukemia was cured by the transplant and that she succumbed, instead, to unusual complications from transplant. In both cases, all parties, I'm told, found this type of connection to be extremely gratifying.
In any case (if you're still reading this), it doesn't have to be a big deal. I'd be happy to help if there was someone with the computer skills necessary to whip up a quick site. We could build it up with a little marr-o-meter (get it? Marrow Meter!) to show how many MeFites register. Anyhow, interested people can MeMail me at their leisure, or directly e-mail me at the address in my profile.
posted by scblackman at 4:48 PM on June 18, 2009 [5 favorites]
Thanks for the clarification on the fees, scblackman, that confused me. It was free for me in Texas a few years ago, and I don't see any information on the website of the clinic I went to (in Houston) indicating that that has changed.
I recently updated my contact info, so I'm good to go.
posted by bwanabetty at 4:55 PM on June 18, 2009
I recently updated my contact info, so I'm good to go.
posted by bwanabetty at 4:55 PM on June 18, 2009
Er, the blood donation center I went to to get on the national marrow registry, that is.
posted by bwanabetty at 4:57 PM on June 18, 2009
posted by bwanabetty at 4:57 PM on June 18, 2009
PS: I'll donate my pint for you as well, DNAB, if you're okay with having a (theoretical) breeder as a surrogate :)
Absofuckinglutely. Discrimination is vile, and I tend to punch idiot fags who call heterosexuals 'breeders'. It's just as disgusting as being called 'faggot' by some homophobe. (I know you were using it in a self-mocking manner, so no worries there. I won't punch you :)
posted by dirtynumbangelboy at 5:02 PM on June 18, 2009
Absofuckinglutely. Discrimination is vile, and I tend to punch idiot fags who call heterosexuals 'breeders'. It's just as disgusting as being called 'faggot' by some homophobe. (I know you were using it in a self-mocking manner, so no worries there. I won't punch you :)
posted by dirtynumbangelboy at 5:02 PM on June 18, 2009
Ah. Here we go. It was New Hampshire.
It was going to drive me nuts if I couldn't remember that kid's name.
Oh ... and while I'm at it (thinking about childhood cancer and all of that). I recognize that it entirely tangential, but I just saw this incredibly awesome story about how Pixar flew an employee and a DVD copy of the movie Up to the home of a child with a rare tumor who didn't want to die until she saw the film. It reminded me of Astro Zombie's similarly Amazing Pixar story from last year.
posted by scblackman at 5:06 PM on June 18, 2009
It was going to drive me nuts if I couldn't remember that kid's name.
Oh ... and while I'm at it (thinking about childhood cancer and all of that). I recognize that it entirely tangential, but I just saw this incredibly awesome story about how Pixar flew an employee and a DVD copy of the movie Up to the home of a child with a rare tumor who didn't want to die until she saw the film. It reminded me of Astro Zombie's similarly Amazing Pixar story from last year.
posted by scblackman at 5:06 PM on June 18, 2009
Damn, I joined two months ago and had to pay the $52. I wish they had said they'd be having a free drive.
posted by Rhomboid at 5:10 PM on June 18, 2009
posted by Rhomboid at 5:10 PM on June 18, 2009
Well now that I realize my free registration was probably because of fundraising somewhere, I am going to make a $$ donation anyway.
posted by bwanabetty at 5:21 PM on June 18, 2009
posted by bwanabetty at 5:21 PM on June 18, 2009
I'm curious about the procedure and the pain involved. I hear bad things.
I was a marrow match 3 years ago and ended up donating using the peripheral blood stem cell technique metaBugs and scblackman refer to above. As far as pain goes, it was no big deal: Given a choice between doing that again and getting a cold, I'd choose the donation. But as noted above there is a lot of testing done beforehand that takes some time. (It helps to think about it as a pretty thorough physical on somebody else's dime.) All the way through the process until they start to inject you with the growth factor (in my case filgrastim) you are reassured that if you want to back out you can.
Someone I work with did a donation where they took bone marrow out of her hip or pelvis with a needle, and she says that also wasn't a big deal.
So much for anecdotes. Here is marrow.org's FAQ page about donating, including questions about pain and risks.
posted by Killick at 5:25 PM on June 18, 2009 [1 favorite]
I was a marrow match 3 years ago and ended up donating using the peripheral blood stem cell technique metaBugs and scblackman refer to above. As far as pain goes, it was no big deal: Given a choice between doing that again and getting a cold, I'd choose the donation. But as noted above there is a lot of testing done beforehand that takes some time. (It helps to think about it as a pretty thorough physical on somebody else's dime.) All the way through the process until they start to inject you with the growth factor (in my case filgrastim) you are reassured that if you want to back out you can.
Someone I work with did a donation where they took bone marrow out of her hip or pelvis with a needle, and she says that also wasn't a big deal.
So much for anecdotes. Here is marrow.org's FAQ page about donating, including questions about pain and risks.
posted by Killick at 5:25 PM on June 18, 2009 [1 favorite]
I'm excluded because I have idiopathic thrombocytopenia purpura. But I will link to the donor registry on my facebook page and encourage people to sign up.
posted by not that girl at 5:47 PM on June 18, 2009
posted by not that girl at 5:47 PM on June 18, 2009
I tend to punch idiot fags who call heterosexuals 'breeders'.
Ha. I tend to think it's an awesome poke in the eye to folks who see an essential legal difference between us. :P
posted by mediareport at 6:27 PM on June 18, 2009
Ha. I tend to think it's an awesome poke in the eye to folks who see an essential legal difference between us. :P
posted by mediareport at 6:27 PM on June 18, 2009
I'm one of those people who has been meaning to sign up for the longest time, but never have, until . . . . TODAY! thanks to this post and the link so helpfully included. Thank you.
posted by littlecatfeet at 6:28 PM on June 18, 2009
posted by littlecatfeet at 6:28 PM on June 18, 2009
I just signed up, it took less than 10 minutes. Thanks for the info!
posted by HopperFan at 6:45 PM on June 18, 2009
posted by HopperFan at 6:45 PM on June 18, 2009
Previously. This is good. Virtually all of the salient points about the value of having your marrow in your countries bone marrow registry have been made. That said, registering to donate marrow - and then actually donating if you're ever a match - can profoundly impact somebody's life. Even if they remove it from you the old fashioned way (through the pelvis), the small discomfort is more than balanced out by the knowledge that your small inconvenience quite literally saved somebody's life.
This is my favorite charitable cause, as you may have surmised, and I'm grateful to metaBugs, scblackman and Metafilter in general for encouraging a renewed push for registration. Thank you!
posted by Joey Michaels at 6:47 PM on June 18, 2009
This is my favorite charitable cause, as you may have surmised, and I'm grateful to metaBugs, scblackman and Metafilter in general for encouraging a renewed push for registration. Thank you!
posted by Joey Michaels at 6:47 PM on June 18, 2009
I'm curious about the procedure and the pain involved. I hear bad things.
I signed up yesterday, and I too had heard bad things about the pain. But I read around a lot yesterday and it seemed totally unfounded - either it's like an extended blood donation, or they knock you out and you wake up later with a sore lower back and some nausea, maybe.
And anyway, it's a small amount of pain to help someone who is possibly really suffering much worse.
posted by Solon and Thanks at 6:47 PM on June 18, 2009
I signed up yesterday, and I too had heard bad things about the pain. But I read around a lot yesterday and it seemed totally unfounded - either it's like an extended blood donation, or they knock you out and you wake up later with a sore lower back and some nausea, maybe.
And anyway, it's a small amount of pain to help someone who is possibly really suffering much worse.
posted by Solon and Thanks at 6:47 PM on June 18, 2009
I had a med student. It could have been much worse, I suppose, but as far as I'm concerned, he didn't pass. That said, I'll do it again if they call me.
People I've cared for after the procedure are generally a little uncomfortable and very happy.
posted by reflecked at 6:54 PM on June 18, 2009
People I've cared for after the procedure are generally a little uncomfortable and very happy.
posted by reflecked at 6:54 PM on June 18, 2009
not to gay men: I just tried to join and was disqualified because I'm a man who has had sex with another man in the past five years.
So, there's that.
posted by roger ackroyd at 7:04 PM on June 18, 2009
So, there's that.
posted by roger ackroyd at 7:04 PM on June 18, 2009
I signed up last week, finally! Even though I've worked in Blood and Marrow Transplant for 8 years, they've actually *loosened* the restrictions in my case. Asthma was formerly a reason for deferrment, but now it's okay as long as you haven't been hospitalized for it.
I just want to reiterate that they don't ask about your sexual history on the initial questionnaire for the donor registry. (on preview, roger ackroyd: were you trying to donate blood at the same time? if you sign up through bethematch.org I think you can bypass those questions altogether.) And please don't let your fear of being denied/rejected/deferred keep you from getting on the registry. If you are relatively healthy and don't have a history of cancer and end up matching someone, they will want you as a donor. Just this past week I overheard a doctor choosing a donor who had celiac disease, even though it's an autoimmune disorder, because that donor was better than the other potential donor who had some other, worse disorder that would be more likely to harm the recipient.
And, so you're all aware, as of December 2007, all Blood, Cord Blood, and Bone Marrow transplants in the United States go into a database for outcomes and quality research. That's what I do, and I can translate all the acronyms to prove it. So for those of you that end up having to pay to join the registry, you can think of your money as going towards supporting a MeFite for science!
posted by sarahnade at 7:12 PM on June 18, 2009
I just want to reiterate that they don't ask about your sexual history on the initial questionnaire for the donor registry. (on preview, roger ackroyd: were you trying to donate blood at the same time? if you sign up through bethematch.org I think you can bypass those questions altogether.) And please don't let your fear of being denied/rejected/deferred keep you from getting on the registry. If you are relatively healthy and don't have a history of cancer and end up matching someone, they will want you as a donor. Just this past week I overheard a doctor choosing a donor who had celiac disease, even though it's an autoimmune disorder, because that donor was better than the other potential donor who had some other, worse disorder that would be more likely to harm the recipient.
And, so you're all aware, as of December 2007, all Blood, Cord Blood, and Bone Marrow transplants in the United States go into a database for outcomes and quality research. That's what I do, and I can translate all the acronyms to prove it. So for those of you that end up having to pay to join the registry, you can think of your money as going towards supporting a MeFite for science!
posted by sarahnade at 7:12 PM on June 18, 2009
Just finished the online process. Thanks for the nudge, I've been meaning to do this forever. Fine, so maybe it'll hurt if they need me - who cares? Life > pain.
posted by Tomorrowful at 7:23 PM on June 18, 2009
posted by Tomorrowful at 7:23 PM on June 18, 2009
sarahnade, the sexual history question at marrow.org is only activated for men. maybe that's why you didn't get it?
posted by roger ackroyd at 7:55 PM on June 18, 2009
posted by roger ackroyd at 7:55 PM on June 18, 2009
Note that females who engage in lesbian sex have always been allowed to donate blood and tissue in the US. So to say that "any MeFi members of the Pink Mafia are not allowed to donate any blood or tissue products, period" is, well, wrong.
About 50%, then.
posted by Blazecock Pileon at 8:18 PM on June 18, 2009
About 50%, then.
posted by Blazecock Pileon at 8:18 PM on June 18, 2009
What a great idea. I'm in, baby! This calls for a round of marriages!
posted by Mister_A at 8:18 PM on June 18, 2009
posted by Mister_A at 8:18 PM on June 18, 2009
I'm not allowed to donate blood because of recent travel. Should I bother signing up for the US bone marrow registry?
posted by lullaby at 8:24 PM on June 18, 2009
posted by lullaby at 8:24 PM on June 18, 2009
On behalf of DNAB, the pink mafia, litterateur and Colby, I'm in. HTH.
posted by Space Kitty at 8:36 PM on June 18, 2009
posted by Space Kitty at 8:36 PM on June 18, 2009
Lullaby, from what I know (Cdn, but probably applies), you still should sign up. For one, you won't be ineligible due to travel forever and it can take a while to go through the signup (especially if you're like me and screw up the swab). But more importantly, if you're a match, and there's nobody better, they'll figure out a way to get at your sweet sweet marrow even if you've been in infectious zones.
posted by Lemurrhea at 8:37 PM on June 18, 2009
posted by Lemurrhea at 8:37 PM on June 18, 2009
Just registered, and I'd be glad to answer the call if asked. Thanks for the info.
posted by deezil at 9:00 PM on June 18, 2009
posted by deezil at 9:00 PM on June 18, 2009
Thanks for the links, folks. I've signed up and should get my kit in a week. :)
posted by LOLAttorney2009 at 9:29 PM on June 18, 2009
posted by LOLAttorney2009 at 9:29 PM on June 18, 2009
For what it's worth, I work at the National Marrow Donor Program, and am responsible for the online registration site. Thanks for registering everyone! This latest effort has been very successful, and if you miss this weekend's end of the Marrowthon, please check back at the beginning of July, when we should be providing funded registration again (i.e., free). We especially need people of minority descent, so spread the word. As Killick said above, the donation process is not the biggest of deals, and there are really only a few times when you can be asked to save a person's life. We do a lot of patient-directed outreach, I'm sure that litterateur could find someone to talk to at 1 (888) 999-6743, our office of Patient Advocacy. I'll cross-post this into the original thread.
Thanks again for helping.
posted by Read at 9:54 PM on June 18, 2009 [4 favorites]
Thanks again for helping.
posted by Read at 9:54 PM on June 18, 2009 [4 favorites]
I'm in.
Lullaby, the FAQ on the site says that there are no travel restrictions to join the registry, and essentially that they'll evaluate travel more carefully in the event that you're matched.
posted by LittleMissCranky at 9:56 PM on June 18, 2009
Lullaby, the FAQ on the site says that there are no travel restrictions to join the registry, and essentially that they'll evaluate travel more carefully in the event that you're matched.
posted by LittleMissCranky at 9:56 PM on June 18, 2009
Thanks, Read, for your informed input! I am full-blooded Korean as far as I know (adopted and an only child), so I am certainly aware of how difficult this might become if I have, indeed, relapsed.
Thank you for the phone number. It's going into my cellphone as we speak. My oncologist still doesn't know anything, but he is talking with bone marrow transplant doctors in the Denver area over the next few days.
I am so touched by the outpouring I've seen so far on this thread, and in my original AskMe. You guys rock. It's generosity like this that has done immense things for my recovery. You have no idea how the kindness of strangers uplifts the spirits of the downtrodden.
posted by litterateur at 10:08 PM on June 18, 2009 [1 favorite]
Thank you for the phone number. It's going into my cellphone as we speak. My oncologist still doesn't know anything, but he is talking with bone marrow transplant doctors in the Denver area over the next few days.
I am so touched by the outpouring I've seen so far on this thread, and in my original AskMe. You guys rock. It's generosity like this that has done immense things for my recovery. You have no idea how the kindness of strangers uplifts the spirits of the downtrodden.
posted by litterateur at 10:08 PM on June 18, 2009 [1 favorite]
I registered. Between this and the Kiva membership drive, MetaFilter is making me feel all kinds of warm fuzzies lately.
posted by ecrivain at 10:22 PM on June 18, 2009
posted by ecrivain at 10:22 PM on June 18, 2009
FUCK.
Is there somewhere I can send money, as I am apparently not allowed to donate?
Sometimes being diabetic is more annoying than at other times. Fuck this stupid disease right in its stupid ear.
posted by scrump at 12:14 AM on June 19, 2009
Is there somewhere I can send money, as I am apparently not allowed to donate?
Sometimes being diabetic is more annoying than at other times. Fuck this stupid disease right in its stupid ear.
posted by scrump at 12:14 AM on June 19, 2009
Wow, over fifteen new signups and a couple of promised donations already? You folks are amazing.
I still think that scblackman's idea -- a small site where we can encourage people to register and tick themselves off when they're done -- is great. It'll give us something to put in the sidebar and get attention from far more people than this post will.
The UK is different from the USA: while the USA just wants a cheek swab that can be sent through the mail, the UK wants to take a tiny blood sample. The current list of upcoming recruitment clinics is here [pdf link]. I've left a message with the lady who organises the London registration clinics to ask roughly how many people we'd need to get one of their nurses to come along. If that's not possible, there are still occasional public clinics that we could encourage MeFites to attend.
If there's really no-one with some basic Web skills to help, we could an existing service like Pledge Bank. The downside of their system is that all the pledges take the form "I'll do [promise], but only if [number] people join me to do the same". I don't really like the idea of putting that rider on it, but what do you guys think?
jessamyn - Not that this isn't a noble cause...
I can see why you thought that, I should've been more clear about where I was quoting from. Sorry for the confusion! Of course I'd never publicly publish an email or PM without the sender's explicit permission.
posted by metaBugs at 5:00 AM on June 19, 2009
I still think that scblackman's idea -- a small site where we can encourage people to register and tick themselves off when they're done -- is great. It'll give us something to put in the sidebar and get attention from far more people than this post will.
The UK is different from the USA: while the USA just wants a cheek swab that can be sent through the mail, the UK wants to take a tiny blood sample. The current list of upcoming recruitment clinics is here [pdf link]. I've left a message with the lady who organises the London registration clinics to ask roughly how many people we'd need to get one of their nurses to come along. If that's not possible, there are still occasional public clinics that we could encourage MeFites to attend.
If there's really no-one with some basic Web skills to help, we could an existing service like Pledge Bank. The downside of their system is that all the pledges take the form "I'll do [promise], but only if [number] people join me to do the same". I don't really like the idea of putting that rider on it, but what do you guys think?
jessamyn - Not that this isn't a noble cause...
I can see why you thought that, I should've been more clear about where I was quoting from. Sorry for the confusion! Of course I'd never publicly publish an email or PM without the sender's explicit permission.
posted by metaBugs at 5:00 AM on June 19, 2009
I'm a London Englander and would be happy to do this.
posted by Cantdosleepy at 5:19 AM on June 19, 2009
posted by Cantdosleepy at 5:19 AM on June 19, 2009
scrump, if you're in the US (or even if you're not, I guess), you can donate money to the Be The Match Foundation here. I just registered. I'm a little nervous about the needle in the bone part.
posted by bluefly at 5:24 AM on June 19, 2009
posted by bluefly at 5:24 AM on June 19, 2009
Under UK medical qualifications:
age 18 - 40 : health and circumstances permitting, you remain on the Register until your 60th birthday, so don't be put off joining if you are close to 40
I'm 41 (and in great health, thank you) but its not clear from that text if they want me or not...
Can anyone here clarify?
posted by vacapinta at 6:18 AM on June 19, 2009
age 18 - 40 : health and circumstances permitting, you remain on the Register until your 60th birthday, so don't be put off joining if you are close to 40
I'm 41 (and in great health, thank you) but its not clear from that text if they want me or not...
Can anyone here clarify?
posted by vacapinta at 6:18 AM on June 19, 2009
Lemurrhea & LittleMissCranky: thanks. I'm going to go sign up now.
posted by lullaby at 9:04 AM on June 19, 2009
posted by lullaby at 9:04 AM on June 19, 2009
I have been in the database for years starting when a friend's brother was diagnosed with leukemia. He did find a donor and is still alive today. I have yet to be called, but I can't think of anything better to do than save someone else's life and the pain be damned. Everybody should be in this thing. The FDA should lighten up on gay men too. Who facing leukemia would not be willing to take the risk if the donor tested free of disease? The risk of leukemia seems quite a bit higher.
posted by caddis at 9:06 AM on June 19, 2009
posted by caddis at 9:06 AM on June 19, 2009
I signed up eons ago in the early 90's (it was free when I did it - wonder when that changed) but I should also check and make sure they have my current address.
posted by Julnyes at 9:11 AM on June 19, 2009
posted by Julnyes at 9:11 AM on June 19, 2009
I've just signed up. If you're a British expat in the US note that they don't disqualify you for potential CJD like those picky blood donation peeps. I called the 1-800 number to confirm. Yay!
posted by IanMorr at 9:58 AM on June 19, 2009
posted by IanMorr at 9:58 AM on June 19, 2009
I just signed up for this! Thanks for pointing us to this, scblackman & metaBugs!
Confidential to internet spouses - Sorry, but I listed the guy I sleep next to as my spouse on the registration form. Maybe next time!
posted by chiababe at 9:58 AM on June 19, 2009
Confidential to internet spouses - Sorry, but I listed the guy I sleep next to as my spouse on the registration form. Maybe next time!
posted by chiababe at 9:58 AM on June 19, 2009
It wasn't free in the 90's as far as I know, but often when someone organizes a drive they pick up the tab for the tissue typing for everyone.
posted by caddis at 10:04 AM on June 19, 2009
posted by caddis at 10:04 AM on June 19, 2009
I got most of the way through signing up, but the server started to crap out, so I'll try again a bit later.
My dad has given on numerous occasions, and I've always been super-proud of him for doing so. Thanks for giving me the opportunity to step up and do it myself.
posted by SpiffyRob at 10:14 AM on June 19, 2009
My dad has given on numerous occasions, and I've always been super-proud of him for doing so. Thanks for giving me the opportunity to step up and do it myself.
posted by SpiffyRob at 10:14 AM on June 19, 2009
I just registered. Been meaning to do this for years, thanks for the heads up!
posted by metasav at 11:07 AM on June 19, 2009
posted by metasav at 11:07 AM on June 19, 2009
Huh. If you try to enter contact-person info for someone outside the United States, even though the form lists that country, it chokes on the State field.
posted by tangerine at 12:10 PM on June 19, 2009
posted by tangerine at 12:10 PM on June 19, 2009
Thanks for suggesting this, I had been intending to do this for a long time. I signed up today.
posted by arnicae at 2:28 PM on June 19, 2009
posted by arnicae at 2:28 PM on June 19, 2009
I cannot register because of my asthma, but since I just got back from my Aunt Helen's funeral (she died of leukemia Monday), I will pay for another MeFite's bone marrow donation should they decide to do so and must pay to register and cannot afford it. Yes, even if you live outside the US... Anyone interested, please MeMail me.
I also donated money to the program. This is excellent timing for me, personally, and I appreciate the link and the opportunity.
posted by Unicorn on the cob at 5:24 PM on June 19, 2009
I also donated money to the program. This is excellent timing for me, personally, and I appreciate the link and the opportunity.
posted by Unicorn on the cob at 5:24 PM on June 19, 2009
Litterateur, I prayed for you today. May you live long and continue writing beautifully!
posted by Unicorn on the cob at 5:31 PM on June 19, 2009
posted by Unicorn on the cob at 5:31 PM on June 19, 2009
Scrump and others who wish to donate anonymously or in honor of someone else: direct donation link for USians here
posted by Unicorn on the cob at 5:33 PM on June 19, 2009
posted by Unicorn on the cob at 5:33 PM on June 19, 2009
I signed up today. Thanks for the link to the free donation drive; I wouldn't have been able to afford to pay to sign up, but I'm happy to give if I'm ever a match.
posted by twiggy32 at 10:31 PM on June 19, 2009
posted by twiggy32 at 10:31 PM on June 19, 2009
I just signed up, too -- thanks so much for bringing this to everyone's attention.
posted by cider at 7:28 AM on June 20, 2009
posted by cider at 7:28 AM on June 20, 2009
Done. Thanks so much for reminding me about the registry and letting me know about the free sign-up.
posted by EmilyClimbs at 10:42 AM on June 20, 2009
posted by EmilyClimbs at 10:42 AM on June 20, 2009
If anyone cares, I've just posted a long update to my CaringBridge site. Thanks again, everyone, for your thoughts and prayers! And for giving of yourselves unselfishly.
posted by litterateur at 11:25 AM on June 23, 2009
posted by litterateur at 11:25 AM on June 23, 2009
I did my swabs today and I'm happy to report that it didn't hurt a bit.
Glad I can do something to help since I'm banned from giving blood for life: apparently Brits are not accepted for blood donation in US or Canada since we may have mad-cow disease, thanks Mr Gummer!
posted by arcticseal at 2:16 PM on June 27, 2009
Glad I can do something to help since I'm banned from giving blood for life: apparently Brits are not accepted for blood donation in US or Canada since we may have mad-cow disease, thanks Mr Gummer!
posted by arcticseal at 2:16 PM on June 27, 2009
I'm already in the bone marrow database through GiftOfLife.org. Fun fact: if you donated through them and if you call them up and ask them, they will tell you your HLA types over the phone. Wikipedia informs me that my HLA types are associated with Middle East populations (one of them is found in 30% of people in Gaza) and associated with gluten intolerance. I am, in fact, a Jew with celiac disease. So, uh, yay HLA.
posted by Asparagirl at 9:58 PM on June 27, 2009
posted by Asparagirl at 9:58 PM on June 27, 2009
I did my swabs today. Super simple and they give you a BIOHAZARD sticker to put on your swab envelope. Fun!
posted by jessamyn (staff) at 3:26 PM on June 30, 2009
posted by jessamyn (staff) at 3:26 PM on June 30, 2009
I'm not sure if anyone's still watching this, but I've thrown together a little for the metafilter marrow donation drive: http://metafilter-marrow-drive.wikispaces.com/
I'd be really grateful if you great folks could have a look and make or suggest improvements, before trying to unleash it on the wider MeFi community to get more visibility and, hopefully, more sign-ups. Add your stories, knowledge, etc. I tend to be very verbose, so its current form might need editing down a bit!
If you've signed up or have started to sign up as a result of this thread, I'd be really grateful if you could try adding yourself to the "big list of donors" and give me an idea how straightforward you found it.
If you're interested in attending a clinic/registration event please try adding your city to the list.
I know a wiki isn't ideal, but it's all I have the skills to produce. If you can build something better (or suggest an easy kit to do it) that'd be great!
Thanks, you're awesome!
posted by metaBugs at 7:30 AM on July 7, 2009
I'd be really grateful if you great folks could have a look and make or suggest improvements, before trying to unleash it on the wider MeFi community to get more visibility and, hopefully, more sign-ups. Add your stories, knowledge, etc. I tend to be very verbose, so its current form might need editing down a bit!
If you've signed up or have started to sign up as a result of this thread, I'd be really grateful if you could try adding yourself to the "big list of donors" and give me an idea how straightforward you found it.
If you're interested in attending a clinic/registration event please try adding your city to the list.
I know a wiki isn't ideal, but it's all I have the skills to produce. If you can build something better (or suggest an easy kit to do it) that'd be great!
Thanks, you're awesome!
posted by metaBugs at 7:30 AM on July 7, 2009
I added myself, I think the page is a little confusing and I wasn't totally clear what the difference was between "I've signed up" and "I've registered" Maybe a little less wordy and a little more clear? Right now I've added myself to some subpage but the main page still says zero. I'll mess around with this a little bit myself and encourage others to do the same.
posted by jessamyn (staff) at 7:45 AM on July 7, 2009
posted by jessamyn (staff) at 7:45 AM on July 7, 2009
jessamyn - I'll mess around with this a little bit myself and encourage others to do the same.
That would be great, thanks! I tend to be far too verbose and I scrawled that at the same time as finishing another huge piece of writing. I knew it'd need some heavy editing; I'm much more used to detail-heavy technical writing than creating stuff for public consumption. I'll have a crack at it, but I'd love to see what a few fresh (and more talented!) minds can do. The goal here is to get a good site rather than launch my writing career, so I'll be equally delighted if someone just decides to replace chunks or even redo the entire thing from scratch.
Unfortunately I can't see any way to make the total on the main page automatically update to reflect the contents of the sign-up table; there's just not that much power in the markup language. I think the paragraph that you found confusing is my request for users to update the main page's total manually. I'll have another look at it tonight.
posted by metaBugs at 9:58 AM on July 8, 2009
That would be great, thanks! I tend to be far too verbose and I scrawled that at the same time as finishing another huge piece of writing. I knew it'd need some heavy editing; I'm much more used to detail-heavy technical writing than creating stuff for public consumption. I'll have a crack at it, but I'd love to see what a few fresh (and more talented!) minds can do. The goal here is to get a good site rather than launch my writing career, so I'll be equally delighted if someone just decides to replace chunks or even redo the entire thing from scratch.
Unfortunately I can't see any way to make the total on the main page automatically update to reflect the contents of the sign-up table; there's just not that much power in the markup language. I think the paragraph that you found confusing is my request for users to update the main page's total manually. I'll have another look at it tonight.
posted by metaBugs at 9:58 AM on July 8, 2009
This is very interesting. Whether it's true or not, I associate anything involving bone marrow with extreme pain (thanks to Dr. House, who I hear tends to favor sadistic methods even when an analgesic would be just fine), but I can't, in good conscience, let that stop me from registering.
Also, this may be selfish, but as a mild hypochondriac and science nerd, the idea of getting all these tests done sounds like something really good to know. In the utilitarian sense, I potentially benefit someone with the same bone marrow type, and I also get to know more about my body.
Upthread, someone mentioned they almost joined, but didn't because they were considering starting an SSRI. Do SSRIs make you invalid to donate?
posted by mccarty.tim at 8:50 AM on December 4, 2009
Also, this may be selfish, but as a mild hypochondriac and science nerd, the idea of getting all these tests done sounds like something really good to know. In the utilitarian sense, I potentially benefit someone with the same bone marrow type, and I also get to know more about my body.
Upthread, someone mentioned they almost joined, but didn't because they were considering starting an SSRI. Do SSRIs make you invalid to donate?
posted by mccarty.tim at 8:50 AM on December 4, 2009
You would think the insurance companies would run these registries for free. After all, isn't it cheaper to give someone a bone marrow transplant than to keep them in the hospital on transfusions until they happen to find a match?
I mean, I know we're all HURF DURF HMO RATIONER here, but the fact that they aren't stepping up to the plate here is either nonsense or criminal incompetence. I guess if they're Machiavellian, they could assume that if they don't donate, then private citizens and government will donate to fill the need, thus subsidizing their business, which is a pretty disgusting attitude from an industry that's supposed to keep people healthy (in right winger's fevered dreams). This is a matter of life and death.
posted by mccarty.tim at 9:13 AM on December 4, 2009
I mean, I know we're all HURF DURF HMO RATIONER here, but the fact that they aren't stepping up to the plate here is either nonsense or criminal incompetence. I guess if they're Machiavellian, they could assume that if they don't donate, then private citizens and government will donate to fill the need, thus subsidizing their business, which is a pretty disgusting attitude from an industry that's supposed to keep people healthy (in right winger's fevered dreams). This is a matter of life and death.
posted by mccarty.tim at 9:13 AM on December 4, 2009
This thread was started in response to an AskMe thread by litterateur, who posted a question about her leukaemia treatment. Later in the conversation she posted a link to her caringbridge site/blog, which I looked in on occasionally. I'm very sorry to pass on the news from her site that her treatment was unsuccessful, and that she passed away a few weeks ago.
Reading back through this thread, she inspired many Mefites to sign up to their local bone marrow registries. By doing this, she has played an important part in offering a treatment and potential cure to future sufferers. While I didn't know litteratuer outside a few exchanges on Metafilter, I lost a close relative to the same disease. I'm touched by this and deeply grateful to her and to all of you who've singed up, for being willing to offer a chance to future patients. IMO this thread is one of metafilter's finer moments; thanks guys 'n girls.
posted by metaBugs at 11:59 AM on December 4, 2009
Reading back through this thread, she inspired many Mefites to sign up to their local bone marrow registries. By doing this, she has played an important part in offering a treatment and potential cure to future sufferers. While I didn't know litteratuer outside a few exchanges on Metafilter, I lost a close relative to the same disease. I'm touched by this and deeply grateful to her and to all of you who've singed up, for being willing to offer a chance to future patients. IMO this thread is one of metafilter's finer moments; thanks guys 'n girls.
posted by metaBugs at 11:59 AM on December 4, 2009
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posted by dirtynumbangelboy at 2:53 PM on June 18, 2009