
Saving a Life is Easy, But I Didn't - randfish
http://www.danshapiro.com/blog/2011/11/saving-a-life-is-easy-but-i-didnt/
======
timr
_"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.as...](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)

(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
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).

~~~
Egregore
Is it safe from hygienic point of view? What are the chances of catching a
disease from previous donor during this procedure?

~~~
llimllib
> What are the chances of catching a disease from previous donor during this
> procedure?

Effectively zero, as onemoreact says.

The chance of becoming infected due to unsterile conditions or opportunistic
infections is higher than zero, however. This page is the best I've been able
to find so far:

<http://www.livingdonorsonline.org/marrow/marrow5.htm>

That page says you're taking about a 1 in 370 chance of serious complications:

> life-threatening complications for all marrow donors have been rare; there
> were 13 reported in 4,800 [0.27%, or one in 370] analyzed marrow donations.

edit: I found a small-n study that is very positive:

edit 2: I omitted the small-n study, because I found a much bigger one:

> The experience at a single institution in harvesting marrow for allogeneic
> transplantation on 1,270 occasions from 1,160 normal donors is presented in
> detail, together with an analysis of all the donor complications...
> Hospitalization time was three days or less for 99% of the procedures. Six
> donors had life-threatening complications; three of a cardiopulmonary and
> two of an infectious nature, and one cerebrovascular embolic episode.
> Significant operative site morbidity, usually transient neuropathies,
> occurred in ten procedures.

[http://bloodjournal.hematologylibrary.org/content/64/3/630.s...](http://bloodjournal.hematologylibrary.org/content/64/3/630.short)

tl;dr: marrow donation carries about a 1% chance of any complications at all,
and a .5% chance of life-threatening complications.

------
heimidal
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
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.

~~~
radu_floricica
I've seen the math in another discussion in another forum, and it's actually
sensible to turn away gay people. From their point of view the goal is to get
as many blood donations as possible, while minimizing the risk of disease.
They couldn't give a f*ck about anything else.

Couldn't find all the numbers I was looking for, but it turns out 61% of
infections in US are through male-to-male sexual contact. This probably
translates into over 60% of HIV carriers being male and gay.

Now, if I was a guy in a position to decide things, and I could reduce by more
then half the risk of HIV in transfused blood by reducing the donation pool by
7-10%... I'd do it in a heartbeat.

If you have some time you could try to calculate how many more people would
get HIV if gay people would donate blood. You could subtract the people who
wouldn't die because of the increase blood supply. But the result would still
be positive.

The point of the whole blood donation thing is not to be politically correct,
but to solve a problem. Making it politically correct, in this particular
case, would mean solving the problem worse, possibly significantly worse then
if we just let them do their jobs.

~~~
srl
Upvoted, even though you're wrong.

You seem to be saying, in essence: allowing gays to donate doubles the number
of instances of transfusing HIV while only increasing the number of lives
saved by 7-10% (or 20%, or 2% - it doesn't matter). But that's the wrong way
to look at it. Even if 10% of all transfusions from gays resulted in an
additional HIV infection (thanks to testing etc., I'd guess it'd be well below
1%), that still means that, for any given transfusion candidate, you have a
90% possibility of saving their life without transfusing HIV.

~~~
a_m0d
The problem is that the percentages are higher than that. The biggest problem
is that testing won't always pick up HIV and AIDS, because these diseases can
lie "dormant" for quite a while, but yet they are still in the blood
(undetectable) and will cause infections somewhere down the line.

------
danshapiro
Canada

<http://www.onematch.ca/>
[http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.n...](http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.nsf/page/E_ubmdrPKG-
intro?OpenDocument&CloseMenu)

 _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>

 _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/>

<https://www.dkms.de/>

Others

<http://marrowdrives.org/bone_marrow_donor_programs.html>

 _(Scroll down to see the partner organizations in many countries)_

~~~
sequence7
UK at home swab program:

[http://www.anthonynolan.org/What-you-can-do/save-a-
life/Onli...](http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-
application.aspx)

~~~
hellweaver666
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.

------
dholowiski
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
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
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.

------
daryn
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>

------
sequence7
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/Onli...](http://www.anthonynolan.org/What-you-can-do/save-a-life/Online-
application.aspx)

------
cowpewter
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.

------
dylanpyle
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.

------
bglusman
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.

------
andreipop
Thanks for sharing a touching story - a bit of quick digging came up with the
_new_ Canadian equivalent:

<http://www.onematch.ca/>

~~~
danshapiro
Thanks. Updated the links post.

------
alecbee
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...

------
corroded
[http://marrow.org/Join/Join_in_Person/International_Donor_Ce...](http://marrow.org/Join/Join_in_Person/International_Donor_Centers.aspx)

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.

------
pgambling
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.

------
ibelimb
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!

------
Alex3917
Why not just put your email address on your blog, rather than messing around
with their website?

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

------
davidu
I knew it was coming, but that last line was brutal to read.

Signed up!

------
bhickey
Is it possible to donate under sedation?

------
quizbiz
Why don't they collect email addresses?

~~~
danshapiro
They do now. They didn't in 1995.

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

------
nknight
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
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.

~~~
itsnotvalid
You have to pay for mail forwarding and in case for a address that old it
probably didn't really something worthwhile. But we have email addresses now.

~~~
thechut
I recently changed my address and USPS charged me $1 to file the online mail
forwarding form but I believe it's free if you go the post office or mail in
the form (requires stamp). They will forward all mail to the new address for
18 months. After that I believe you can get a year extension but that will
probably cost you another $1.

~~~
hogu
they claim thats there to verify you are really you who is trying to change
the address.

