10 ms·

Saving a Life is Easy, But I Didn't

390 points by randfish 15y ago

dholowiski 15y ago
Shit. Can anyone post the links for other countries (like Canada) to donate? I'm signing up tomorrow. If you want to really affect someone else's life, this is a way better way than building some web-app.
- azov 15y ago
  That's what the developer of marrow.org might have thought. And then: > I fussed around with the website to update my contact data If someone did a better job designing or testing the UI on that web app, who knows how many extra lives may have been saved. When I think about it, I've worked on at least three projects where bugs or usability issues could potentially have a direct impact on someone's life. Yet we didn't reflect on it much in the course of our day-to-day routine. Being a donor is a bold action, but don't underestimate the impact of your development work as well.
  - IgorPartola 15y ago
    At one point I worked on reviewing the code for an emergency alert system for a university. Our group made it really simple not notify 60k people of all sorts of emergencies, through a really simple UI. We had it calling, texting, emailing, updating Facebook and Twitter and displaying messages on TV screens. We also had an equally important test system so the campus police could test their familiarity with the procedures daily. This is the kind of app that saves lives; hence the line-by-line code reviews of every single change to the application, and backup procedures for backup procedures in case something breaks. It is true, not every day you get to work on something like that. However, when you do, it always makes the hair on the back of your head stand up each time you find a bug.
- deleted 15y ago
  [deleted]
nknight 15y ago
Ouch. To the extent it's still relevant in the modern world, our postal system really needs to work a little more like the phone system. I can be pretty much anywhere in the US (or really, the world, if I want to pay international roaming fees), someone can dial my well-known phone number, and my phone will ring. For ordinary first class mail, I should be able to generate unique ID numbers on the USPS's website, and associate them with any physical US address I wish at any time. Then I can keep one or more postal IDs pointed at the location(s) I actually receive mail at, and the scanners (virtually all mail is routed by optical scanners now, even hand-addressed envelopes) can just read the ID number and stamp on the current physical address.
- there 15y ago
  according to the story, the post office did better than any phone provider would. he moved to a new location, maybe years later, and a piece of mail still followed him to his new address. i'm sure the registry gets notified of forwarding address changes for people on their lists, so they could in theory keep up with you even if you moved a bunch of times (as long as you forwarded from at least your last address). if you get a new phone number, your old one probably won't forward to you, and once someone else has that new number, you will never get forwarded calls. at least with a mailing address, new people can occupy that same old address but any mail to it will still forward based on your name.
  - nknight 15y ago
    I seriously doubt the post office had much to do with tracking him down. My repeated experience with the USPS is that they pay absolutely no attention to mail forwarding requests, ever. It's far more likely that someone at the matching network did some googling. And I don't need a new phone number, that's kind of the point. I can switch providers and still keep my number. I can move to the other side of the country and keep my number. That's what I want out of the post office.
    - sixtofour 15y ago
      I've wanted that for years from the post office: one address, your stuff follows you wherever, you never change your "address" you just update your location with the post office. I explained the idea to my first wife in the late seventies, and she thought I was solving a non-problem.
danshapiro 15y ago
Canada http://www.onematch.ca/ http://www.onematch.ca/ http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/E_ubmdrPKG-intro?OpenDocument&CloseMenu http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.n... The first site is supposed to be more current, but isn't rendering properly for me on Firefox. On the second site, Scroll to the bottom for the button to start the process. UK http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan It appears that you opt-in when you donate blood. I don't see mention of an at-home swab program. Germany http://www.stammzellspenderdatei.de/ http://www.stammzellspenderdatei.de/ https://www.dkms.de/ https://www.dkms.de/ Others http://marrowdrives.org/bone_marrow_donor_programs.html http://marrowdrives.org/bone_marrow_donor_programs.html (Scroll down to see the partner organizations in many countries)
- coffeejunk 15y ago
  Also for Germany: https://www.dkms.de/ https://www.dkms.de/
  - danshapiro 15y ago
    Thanks, updated.
- sequence7 15y ago
  UK at home swab program: http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...
  - hellweaver666 15y ago
    I signed up with Anthony Nolan earlier this year and the registration procedure is really easy, fill in a form, spit in a tube, post it back (free of charge). Done. Takes like five minutes of your life. Could save someone else's.
- a_m0d 15y ago
  Australia - http://www.abmdr.org.au/dynamic_menus.php?id=1&subid=1&menuid=17&mainid=1&ssid=1 http://www.abmdr.org.au/dynamic_menus.php?id=1&subid=1&#... Or sign up at the Red Cross centre when you're in there to donate blood - they'll take an extra blood sample for testing purposes.
timr 15y ago
"At the time, the only way to donate marrow was to basically have someone drill holes in your bones and drain your skeleton, which kind of terrified me. Nowadays, of course, most donations require nothing more than sitting still for a few hours with an IV watching television." That actually isn't really true. Marrow donations still require anesthesia and a surgical procedure. In the interest of providing full information: http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#process http://marrow.org/Registry_Members/Donation/Donation_FAQs.as... http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#different http://marrow.org/Registry_Members/Donation/Donation_FAQs.as... (Edit: c'mon folks...why in the world would you vote this down? It's important information to know if you're going to be a donor.)
- danshapiro 15y ago
  From your second link: PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm. Speaking to the marrow.org representative, she said that these days it's about 75% PBSC (sitting in a chair watching TV), 25% outpatient surgery (which is easier now than it was 16 years ago, but still daunting).
  - timr 15y ago
    Yes...you're quoting from the section to which I linked, and that's why I linked to it. I'm not trying to hide anything. I'm also not trying to disagree that people should donate...it's just that you really do have to have a surgical procedure if you're donating marrow. Moreover, PBSC involves a five-day injection drug regimen (filgrastim) that you need to undergo before you get to sit in the chair (http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#pbsc_process http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...). Either way, it's a far more involved procedure than (say) donating plasma -- which is how your post made it sound. The FAQ also says that PBSC donation is considered "investigational" (http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#investigational http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...), though who knows what that means. I just think people should be able to read the answers so that they know what they're doing.
andreipop 15y ago
Thanks for sharing a touching story - a bit of quick digging came up with the new Canadian equivalent: http://www.onematch.ca/ http://www.onematch.ca/
- danshapiro 15y ago
  Thanks. Updated the links post.
heimidal 15y ago
This inspired me to register, but once again I was thwarted by the US' arcane rule banning gay men from donating. The rule applies despite the fact that I've been monogamous for ages and am tested for everything under the sun twice a year. A college frat boy who has had unprotected sex with a different girl every week for the past semester can give blood/marrow, but monogamous, healthy gay men can't. I don't get it.
- tomjen3 15y ago
  It is the same shit for blood donations in Denmark. They got pretty unpopular when they asked for more donors because they feared a shortage but then turned away the gay men. And no, it is not for health issues because they don't turn away gay women. Of course you could register if you want to and then if called upon show up eagerly with your partner for moral support. Then flat out ask if they are going to kill their own patients just to pretend that it is still the fifties. Of course don't do it if they can't get a donor in time.
  - JVirissimo 15y ago
    The assumption that gay women have the same risk profile as gay men seems very weak. Almost any group of women will, on average, engage in less risky behavior than an analogous group of men.
  - heimidal 15y ago
    tomjen3: Gay women are the lowest risk demographic when it comes to HIV contraction, so I don't take issue with their inclusion. The problem, as I see it, is that most countries place an unreasonable bias against _all_ gay men rather than _some_ gay men. The appropriate way to handle donor screenings is to ask about sexual behavior in general, such as whether or not you are monogamous, how many partners in the past year/two years/five years, how often condoms are used, etc. Instead, we blatantly exclude all gay men but do not exclude other high risk demographics. For example, black women are eligible despite being an extremely high risk group compared to white women (1 in 58 vs 1 in 588, respectively). Unfortunately, the FDA is so afraid of alienating existing donors by asking them for a sexual history profile that they would rather stick to the status quo and continue excluding gays altogether.
quizbiz 15y ago
Why don't they collect email addresses?
- danshapiro 15y ago
  They do now. They didn't in 1995.
Alex3917 15y ago
Why not just put your email address on your blog, rather than messing around with their website?
qzio 15y ago
great that this(signing up as a donor) get some attention! We need more bone marrow donors!
sequence7 15y ago
If you're in the UK you can register with the Anthony Nolan trust as a donor. The whole process is incredibly simple, so please do. http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...
corroded 15y ago
http://marrow.org/Join/Join_in_Person/International_Donor_Centers.aspx http://marrow.org/Join/Join_in_Person/International_Donor_Ce... I'm quite surprised that there are no donor centers in other countries. Are there? Most of these(or all) are first world countries - it scares me to think the chances of people in third world countries if even the ones listed here have a hard time looking for donors.
ibelimb 15y ago
I signed up to be a donor, and I'm gonna try and convince my girlfriend to do the same. Thank you for bringing this to my attention!
bglusman 15y ago
I signed up for the program when I read that story, and just sent my cheek swabs in (4 of them!) this past weekend... seems like a no brainer if you actually want to make a difference in the world :-) I wonder if there's a decent solution on the forwarding thing with some kind of unique id as metadata on an address, so if something's important someone in possession of the old address can find you through the ID? Or maybe that's just not practical, as no one would use it/retain the info unneeded in the short term.
pgambling 15y ago
I've been telling myself I would register for awhile now. After reading this, I signed up right away. It only took a few minutes, just waiting on the collection kit.
davidu 15y ago
I knew it was coming, but that last line was brutal to read. Signed up!
cowpewter 15y ago
I was about to sign up, but I am disqualified due to my fibromyalgia, which they consider an auto-immune disorder. I didn't think the current research still considered it one - it's more a neurotransmitter imbalance than anything else.
daryn 15y ago
If any of you are in Seattle, and want to become registered marrow donors and potentially help save a life, there is a swabbing party tonight at the Rob Roy in Belltown. http://www.facebook.com/event.php?eid=174595119298897 http://www.facebook.com/event.php?eid=174595119298897
rmk 15y ago
Question: Can I go to a hospital near my house and donate to the registry?
dylanpyle 15y ago
A sincerely moving story. I'm already a registered donor, but this reminded me to update my address, which, like yours, was still a college dorm. If I were ever called up for a donation, I wouldn't hesitate for a moment.
alecbee 15y ago
Fantastic Story! I always love to see people helping each other. After a visit to India earlier in the year, to oversee development of software for my new biz, I was awestruck at the conditions people were living in. Seeing this made me want to do something to help, and therefore decided to contribute a portion of every dollar earned to build water wells in developing countries for clean water. I will definitely look into this as well to help...
bhickey 15y ago
Is it possible to donate under sedation?

390 points by randfish 15y ago

Shit. Can anyone post the links for other countries (like Canada) to donate? I'm signing up tomorrow. If you want to really affect someone else's life, this is a way better way than building some web-app.

azov 15y ago
That's what the developer of marrow.org might have thought. And then: > I fussed around with the website to update my contact data If someone did a better job designing or testing the UI on that web app, who knows how many extra lives may have been saved. When I think about it, I've worked on at least three projects where bugs or usability issues could potentially have a direct impact on someone's life. Yet we didn't reflect on it much in the course of our day-to-day routine. Being a donor is a bold action, but don't underestimate the impact of your development work as well.
- IgorPartola 15y ago
  At one point I worked on reviewing the code for an emergency alert system for a university. Our group made it really simple not notify 60k people of all sorts of emergencies, through a really simple UI. We had it calling, texting, emailing, updating Facebook and Twitter and displaying messages on TV screens. We also had an equally important test system so the campus police could test their familiarity with the procedures daily. This is the kind of app that saves lives; hence the line-by-line code reviews of every single change to the application, and backup procedures for backup procedures in case something breaks. It is true, not every day you get to work on something like that. However, when you do, it always makes the hair on the back of your head stand up each time you find a bug.
deleted 15y ago
[deleted]

nknight 15y ago

Ouch. To the extent it's still relevant in the modern world, our postal system really needs to work a little more like the phone system. I can be pretty much anywhere in the US (or really, the world, if I want to pay international roaming fees), someone can dial my well-known phone number, and my phone will ring. For ordinary first class mail, I should be able to generate unique ID numbers on the USPS's website, and associate them with any physical US address I wish at any time. Then I can keep one or more postal IDs pointed at the location(s) I actually receive mail at, and the scanners (virtually all mail is routed by optical scanners now, even hand-addressed envelopes) can just read the ID number and stamp on the current physical address.

there 15y ago
according to the story, the post office did better than any phone provider would. he moved to a new location, maybe years later, and a piece of mail still followed him to his new address. i'm sure the registry gets notified of forwarding address changes for people on their lists, so they could in theory keep up with you even if you moved a bunch of times (as long as you forwarded from at least your last address). if you get a new phone number, your old one probably won't forward to you, and once someone else has that new number, you will never get forwarded calls. at least with a mailing address, new people can occupy that same old address but any mail to it will still forward based on your name.
- nknight 15y ago
  I seriously doubt the post office had much to do with tracking him down. My repeated experience with the USPS is that they pay absolutely no attention to mail forwarding requests, ever. It's far more likely that someone at the matching network did some googling. And I don't need a new phone number, that's kind of the point. I can switch providers and still keep my number. I can move to the other side of the country and keep my number. That's what I want out of the post office.
  - sixtofour 15y ago
    I've wanted that for years from the post office: one address, your stuff follows you wherever, you never change your "address" you just update your location with the post office. I explained the idea to my first wife in the late seventies, and she thought I was solving a non-problem.

danshapiro 15y ago

Canada http://www.onematch.ca/ http://www.onematch.ca/ http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/E_ubmdrPKG-intro?OpenDocument&CloseMenu http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.n... The first site is supposed to be more current, but isn't rendering properly for me on Firefox. On the second site, Scroll to the bottom for the button to start the process. UK http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan It appears that you opt-in when you donate blood. I don't see mention of an at-home swab program. Germany http://www.stammzellspenderdatei.de/ http://www.stammzellspenderdatei.de/ https://www.dkms.de/ https://www.dkms.de/ Others http://marrowdrives.org/bone_marrow_donor_programs.html http://marrowdrives.org/bone_marrow_donor_programs.html (Scroll down to see the partner organizations in many countries)

coffeejunk 15y ago
Also for Germany: https://www.dkms.de/ https://www.dkms.de/
- danshapiro 15y ago
  Thanks, updated.
sequence7 15y ago
UK at home swab program: http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...
- hellweaver666 15y ago
  I signed up with Anthony Nolan earlier this year and the registration procedure is really easy, fill in a form, spit in a tube, post it back (free of charge). Done. Takes like five minutes of your life. Could save someone else's.
a_m0d 15y ago
Australia - http://www.abmdr.org.au/dynamic_menus.php?id=1&subid=1&menuid=17&mainid=1&ssid=1 http://www.abmdr.org.au/dynamic_menus.php?id=1&subid=1&#... Or sign up at the Red Cross centre when you're in there to donate blood - they'll take an extra blood sample for testing purposes.

timr 15y ago

"At the time, the only way to donate marrow was to basically have someone drill holes in your bones and drain your skeleton, which kind of terrified me. Nowadays, of course, most donations require nothing more than sitting still for a few hours with an IV watching television." That actually isn't really true. Marrow donations still require anesthesia and a surgical procedure. In the interest of providing full information: http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#process http://marrow.org/Registry_Members/Donation/Donation_FAQs.as... http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#different http://marrow.org/Registry_Members/Donation/Donation_FAQs.as... (Edit: c'mon folks...why in the world would you vote this down? It's important information to know if you're going to be a donor.)

danshapiro 15y ago
From your second link: PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm. Speaking to the marrow.org representative, she said that these days it's about 75% PBSC (sitting in a chair watching TV), 25% outpatient surgery (which is easier now than it was 16 years ago, but still daunting).
- timr 15y ago
  Yes...you're quoting from the section to which I linked, and that's why I linked to it. I'm not trying to hide anything. I'm also not trying to disagree that people should donate...it's just that you really do have to have a surgical procedure if you're donating marrow. Moreover, PBSC involves a five-day injection drug regimen (filgrastim) that you need to undergo before you get to sit in the chair (http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#pbsc_process http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...). Either way, it's a far more involved procedure than (say) donating plasma -- which is how your post made it sound. The FAQ also says that PBSC donation is considered "investigational" (http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx#investigational http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...), though who knows what that means. I just think people should be able to read the answers so that they know what they're doing.

andreipop 15y ago

Thanks for sharing a touching story - a bit of quick digging came up with the new Canadian equivalent: http://www.onematch.ca/ http://www.onematch.ca/

danshapiro 15y ago
Thanks. Updated the links post.

heimidal 15y ago

This inspired me to register, but once again I was thwarted by the US' arcane rule banning gay men from donating. The rule applies despite the fact that I've been monogamous for ages and am tested for everything under the sun twice a year. A college frat boy who has had unprotected sex with a different girl every week for the past semester can give blood/marrow, but monogamous, healthy gay men can't. I don't get it.

tomjen3 15y ago
It is the same shit for blood donations in Denmark. They got pretty unpopular when they asked for more donors because they feared a shortage but then turned away the gay men. And no, it is not for health issues because they don't turn away gay women. Of course you could register if you want to and then if called upon show up eagerly with your partner for moral support. Then flat out ask if they are going to kill their own patients just to pretend that it is still the fifties. Of course don't do it if they can't get a donor in time.
- JVirissimo 15y ago
  The assumption that gay women have the same risk profile as gay men seems very weak. Almost any group of women will, on average, engage in less risky behavior than an analogous group of men.
- heimidal 15y ago
  tomjen3: Gay women are the lowest risk demographic when it comes to HIV contraction, so I don't take issue with their inclusion. The problem, as I see it, is that most countries place an unreasonable bias against _all_ gay men rather than _some_ gay men. The appropriate way to handle donor screenings is to ask about sexual behavior in general, such as whether or not you are monogamous, how many partners in the past year/two years/five years, how often condoms are used, etc. Instead, we blatantly exclude all gay men but do not exclude other high risk demographics. For example, black women are eligible despite being an extremely high risk group compared to white women (1 in 58 vs 1 in 588, respectively). Unfortunately, the FDA is so afraid of alienating existing donors by asking them for a sexual history profile that they would rather stick to the status quo and continue excluding gays altogether.

quizbiz 15y ago

Why don't they collect email addresses?

danshapiro 15y ago
They do now. They didn't in 1995.

Alex3917 15y ago

Why not just put your email address on your blog, rather than messing around with their website?

qzio 15y ago

great that this(signing up as a donor) get some attention! We need more bone marrow donors!

sequence7 15y ago

If you're in the UK you can register with the Anthony Nolan trust as a donor. The whole process is incredibly simple, so please do. http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-application.aspx http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...

corroded 15y ago

http://marrow.org/Join/Join_in_Person/International_Donor_Centers.aspx http://marrow.org/Join/Join_in_Person/International_Donor_Ce... I'm quite surprised that there are no donor centers in other countries. Are there? Most of these(or all) are first world countries - it scares me to think the chances of people in third world countries if even the ones listed here have a hard time looking for donors.

ibelimb 15y ago

I signed up to be a donor, and I'm gonna try and convince my girlfriend to do the same. Thank you for bringing this to my attention!

bglusman 15y ago

I signed up for the program when I read that story, and just sent my cheek swabs in (4 of them!) this past weekend... seems like a no brainer if you actually want to make a difference in the world :-) I wonder if there's a decent solution on the forwarding thing with some kind of unique id as metadata on an address, so if something's important someone in possession of the old address can find you through the ID? Or maybe that's just not practical, as no one would use it/retain the info unneeded in the short term.

pgambling 15y ago

I've been telling myself I would register for awhile now. After reading this, I signed up right away. It only took a few minutes, just waiting on the collection kit.

davidu 15y ago

I knew it was coming, but that last line was brutal to read. Signed up!

cowpewter 15y ago

I was about to sign up, but I am disqualified due to my fibromyalgia, which they consider an auto-immune disorder. I didn't think the current research still considered it one - it's more a neurotransmitter imbalance than anything else.

daryn 15y ago

If any of you are in Seattle, and want to become registered marrow donors and potentially help save a life, there is a swabbing party tonight at the Rob Roy in Belltown. http://www.facebook.com/event.php?eid=174595119298897 http://www.facebook.com/event.php?eid=174595119298897

rmk 15y ago

Question: Can I go to a hospital near my house and donate to the registry?

dylanpyle 15y ago

A sincerely moving story. I'm already a registered donor, but this reminded me to update my address, which, like yours, was still a college dorm. If I were ever called up for a donation, I wouldn't hesitate for a moment.

alecbee 15y ago

Fantastic Story! I always love to see people helping each other. After a visit to India earlier in the year, to oversee development of software for my new biz, I was awestruck at the conditions people were living in. Seeing this made me want to do something to help, and therefore decided to contribute a portion of every dollar earned to build water wells in developing countries for clean water. I will definitely look into this as well to help...

bhickey 15y ago

Is it possible to donate under sedation?