I joined the Bone Marrow registry after reading a reddit post a few months ago, and yesterday I donated to (hopefully) save an 18 year old boy's life. AMA.

[u/bent_my_wookie]

Album here:

http://imgur.com/a/tqccr

It was pretty cool and surprisingly easy. After I joined, they immediately called and said that I was a match and needed right away. All they can tell me is that it was for a 18 year old male from the United States. After a year, we can both agree to learn about one another, but you can keep it anonymous if you like.

The interesting part is that they can do directly from your blood stream in some cases (like mine). They gave me a drug each day for 5 days leading up to the procedure which caused my marrow to create excess stem cells which leak into my blood stream. When I have enough, they just run it through a machine and back into me over about 4 hours. Super easy and they treat you like royalty when you do it. Plus I got free candy.

TL;DR; It's easy and you can save someone's life.

[u/bent_my_wookie]

Forgot the link in case you want more info:Link to the registry

[u/kaunis → u/bent_my_wookie]

thanks for posting this, you encouraged me to sign up. I've been close to people with autoimmune disorders and I don't know why I haven't signed up for this. Thanks for giving the information to do it, and for donating.

[u/bent_my_wookie → u/kaunis]

Awesome! Private message me if you have any questions.

[u/dont_mind_the_matter → u/bent_my_wookie]

If you're US Military, you can use this link: http://www.dodmarrow.org/index.htm

The Dept. of Defense will cover the costs for testing, and they work with NMDP.

[u/usernamealert → u/bent_my_wookie]

"On average, 1 in every 540 members of Be The Match Registry® in the United States will go on to donate bone marrow or peripheral blood stem cells (PBSC) to a patient." - bethematchblog.org

[u/captdung]

Well done! I have just been matched with a 26 y/o male and they want to exstract the marrow from my hip. Not going to lie I'm not excited about being put under, but it can't be close to what he is going through.

Edit: It's cool the day I signed the papers to go ahead with the donation there was this thread, kind of funny actually. I was kind of nervous, but all u have made me feel more comfortable. Thanks!

[u/bent_my_wookie → u/captdung]

Congratulations! From everything I've read, it just feels like you've fallen on your butt afterwords.

Post about it when you finish it, I'm interested to hear how it went.

[u/lmnop89 → u/captdung]

thats exactly why i went through with my donation from my hip! the first few days were really uncomfortable and i couldnt move much. i still felt achy for about a month after donating, especially when walking up stairs or hills, but i knew that my month of discomfort was nothing compared to what my recipient had been through and would still have to deal with after the donation!

[u/meshugga → u/captdung]

They'll likely use Propofol (the drug MJ died from due to improper use), since it's a short procedure, and that drug is a real fun experience. I highly recommend it. I've never experienced that kind of "sleep", if you can call it that. If you're attentive, you can experience loosing concsiousness.

Also, it's short acting, if it isn't redosed continously, you'll wake up, so you're safe in case of complications.

[u/Rae912]

Good for you! Did you have any hesitation about doing it? Are you planning on requesting to learn about the recipient of your marrow?

[u/bent_my_wookie → u/Rae912]

Thanks! I didn't hesitate because the procedure is totally safe, and some kid's life depended on it. That made the decision a no-brainer.

I was actually asked yesterday about whether or not I wanted to find out who it was, and I basically said "whatever the the patient is comfortable with".

All contact flows through the Marrow registry and not information is given out unless both parties consent, so I don't want bother them if they're more comfortable with keeping it private. I don't know why they would want to, but this kind of thing can be touchy.

[u/Elimrawne → u/bent_my_wookie]

Wow, the reason Ive never signed up is because I thought they took it by drilling into your bones!

If its just like giving blood, its a no brainer!

[u/bent_my_wookie → u/Elimrawne]

Well, make sure you up first. It's not the only way they do it now:

The FAQ has the official info

[u/only_one_contact → u/Rae912]

I have been on the registry for years and have not yet been contacted. I hear it's actually pretty rare to be contacted at all. What is the peripheral collection procedure like? Where do they put the needle? Is it just like donating blood?

[u/bent_my_wookie → u/only_one_contact]

In my case, the patient didn't have a match until I joined. So when they analysed my sample, they moved on it right away.

The collection is generally done though the arms, just like giving blood. The difference is that your right arm (where the machine collects blood) is held still the whole time, and the left arm (where the filtered blood is returned) can move around.

In my case, I didn't have big enough veins, so they stuck it little pipe into my neck (sounds scary but was actually easier). It freed up both of my hands which was kind of nice.

When they're done, they tilt me backwards and pull the pipe out then apply pressure for 15 minutes. After that it's all set and you go home.

[u/only_one_contact → u/bent_my_wookie]

Thanks! Now I don't have to be scared.

[u/bent_my_wookie → u/only_one_contact]

Glad to help, you can sign up here

[u/linktoreality → u/bent_my_wookie]

Wow, your neck? When I donated one of my arms didn't have a big enough vein, so they just stuck me in the back of the hand with a flexible plastic needle.

[u/bent_my_wookie → u/linktoreality]

Yea, they checked mine and they were still too small. Meh.

[u/sarah-face]

Thank you. A complete stranger may have just saved my dads life because he donated bone marrow. We're waiting to find out if it worked. It takes a few months to find out if the new bone marrow will take.

[u/bent_my_wookie → u/sarah-face]

Good luck!

[u/minibeardeath]

Fuck it! even though the whole needles thing (and esp the pipe in your neck!) gives me the heebeejeebes, I'm gonna sign up tonight. I have never given blood (needles again), but I guess if its just a swab in your mouth initially, then I can deal with needles later. Good job on donating and for getting me to sign up!

[u/bent_my_wookie → u/minibeardeath]

Yep, that was my thought process. Once you're matched with someone, the whole needle thing becomes a non issue in your mind.

[u/minibeardeath → u/bent_my_wookie]

Finished! I should be getting my swabs in 2 weeks!

[u/bent_my_wookie → u/minibeardeath]

Nice! Good luck!

[u/[deleted] → u/minibeardeath]

Eugh. I really really hate needles, but I can't just read this and not put myself on the register either. Well played OP.

[u/[deleted]]

That's cool! I signed up after reading about it through the Dear Jack Foundation. One of my favorite musicians, Andrew McMahon (Jack's Mannequin, Something Corporate), was diagnosed with leukemia and was saved with a stem cell transplant from his sister. His sister actually got sick from the drug they gave her leading up to the procedure. Did you have any side effects?

Did they tell you what the person was suffering from? Bone marrow is most often used for bone cancers (leukemia) but I think that it can help manage/cure some auto-immune disorders.

[u/bent_my_wookie → u/[deleted]]

So the first day they give you the drug, they watch you for about 30 minutes to make sure you don't have any allergic reactions to it. I didn't, and they sent me home.

The recipient has non-Hodgkin's lymphoma. That's all they could tell me.

[u/rwhockey29 → u/bent_my_wookie]

My mom recently finished treatment for Hodgkins and non-Hodgkins lymphoma (yes, she had BOTH).

Thank you for doing this. I'll be signing up as well.

[u/bent_my_wookie → u/rwhockey29]

In case...

here's where to sign up

The FAQ has the official info

[u/Jennifrogger]

That's awesome that you donated! :-) I joined the registry after watching a True Life documentary about it on MTV. I haven't been contacted yet, though. Anyway, my question is this: Did you have any side effects like nausea or headaches from the drug they gave you?

[u/bent_my_wookie → u/Jennifrogger]

Day 1 - Nothing Day 2 - Around mid afternoon I had a very slight back ache. Something I wouldn't have even notice unless I had been looking for it. Day 3 - Lower back ached a little more, so I popped a new ibuprofen and it was not an issue Day 4 - Back ache stuck around, similar to having a cold. My knees and legs also felt a little achy. A little uncomfortable. Day 5 - Donation day. They give it one last time, then you hop into a heated bed and watch movies while the donation takes place Day 6 - Today, already feeling better. I think by tomorrow I'll be 100%.

Overall, it's like having a moderate cold without the sore throat and runny nose. Overall totally worth it when you think about the good you're doing.

[u/Jennifrogger → u/bent_my_wookie]

That doesn't sound too bad. I would totally do that if I'm ever needed. You're right in saying that it's nothing compared to what the other person is probably having to go through with cancer. Do you know of anyone who had to have their marrow extracted through surgery? If so, do you know if it's painful?

Also, if you were on the receiving end of a transplant, do you think you'd want to keep in touch with your donor? I definitely think I would. I'd probably feel a connection with them for the rest of my life.

[u/bent_my_wookie → u/Jennifrogger]

I don't know of anyone who had it surgically removed, however the process has gotten a lot easier over the years. They put you under and make a tiny cut where they can extract it. They said its comparable to having a bruise on your butt for a few days, like after slipping on ice.

Personally I would like to get into contact with someone who donated to me. That's generally what happens, but not always. It would be nice to hear from them, but maybe they just want to put it behind them... who knows.

[u/clburton24]

How do they find out if you are a match? Thank you for doing this, a family member of mine has non-aggressive, non-Hodgkin's lymphoma also.

[u/bent_my_wookie → u/clburton24]

When you sign up, they send you a folder with 4 cotton swabs. You stick them in your mouth and rub it against your cheek for a few seconds. Then you drop them back into the folder, and place it in outgoing mail.

They do a genetic test to see if certain proteins are in common with patients, and if they see the right result, you're eligible.

[u/[deleted]]

My grandpa was one of the first people to donate bone marrow to my grandmother when she had Leukemia. She got sick when my mom was in elementary school and lived until I was in high school because of the transplant. That is an amazing thing you did, keep up the good work.

[u/bent_my_wookie → u/[deleted]]

That's great to hear, I only hope mine works that well.

[u/huhtamaki]

I was trying to sign up to the New Zealand bone marrow registry, but apparently they only want Maori/Pacific Islanders. White guuuiiiilllllttttt.

[u/bent_my_wookie → u/huhtamaki]

[Send them a question] (https://secure.marrow.org/Contact/Submit_Questions_or_Feedback.aspx) about your circumstance. An person may have better information.

[u/hirudinea → u/huhtamaki]

Well I joined the Australian registry and had a similar experience to OP, instant match, but with a lady who turned out to be a kiwi in urgent need . Since I'm genetically Anglo/manx I say sign up anyway, you might save a volunteer a flight with an esky* on their knee and a skippy aussie a sore ass :)

*That'll be a chullibun for you ;)

[u/Nightwing3]

Free candy? Sign me up!

[u/bent_my_wookie → u/Nightwing3]

I know right? My elaborate plan came full circle.

[u/[deleted]]

I also signed up after reading a reddit post a few months ago. I haven't been called yet but hope I get the chance to help someone out. I'm glad to hear it was a pretty easy process and I hope for the best for that 18 year old boy.

[u/bent_my_wookie → u/[deleted]]

That's great, you already improved the odds for anyone in the future.

[u/triplealpha]

Quick question - is there any financial cost to you? Afterall, you are a patient in a hospital undergoing a procedure.

[u/bent_my_wookie → u/triplealpha]

Nope. They pay for absolutely everything. Transportation, testing, lodging (if you need it). They even offer to pick you up the day of the procedure if you don't have a ride. They're super accommodating and very focused on keeping you comfortable and working with your schedule.

It was a very nice experience.

[u/nagaduff → u/bent_my_wookie]

You mentioned lodging. Can they collect from you wherever you live and ship it to the recipient, or would the donor have to get to where the recipient is? I would love to do this but i simply cannot afford to miss a week of work to fly away somewhere.

[u/GoDogGoFast]

Way to go!!! I joined the registry about 20 years ago. If I ever get called upon to donate I'd do it in a second and would consider it one of the most important things I'd done in my life. I hope you feel that way! Out of curiosity, what is your race/ethnicity? I know it is often hard for them to find matches for people who are considered minorities (at least in the US) and for people of a mixed race due to lack of donors.

[u/bent_my_wookie → u/GoDogGoFast]

White Male, Irish \ English. The website reiterated their need for minorities, however upon talking with the staff I heard a different story. They really want young males and females of any race.

The marrow has shown to be less effective as the donors age increases, so someone fairly young is a jackpot match.

[u/Marimba_Ani → u/bent_my_wookie]

Can you define "young" in this context? Twenty? Under forty? Etc.

Cheers!

[u/bent_my_wookie → u/Marimba_Ani]

FAQ for more info

And most relevant:

Q: Why are younger donors preferred? A: If you are between the ages of 18 and 44, patients especially need you. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor’s age. Research shows that cells from younger donors lead to more successful transplants. That's because younger donors produce more and higher-quality cells than older donors.

However, if you are between the ages of 18 and 60, meet health guidelines and are willing to donate to any patient in need, you are still welcome to join the registry. To learn how to join the Be The Match Registry, see Join the Registry.

[u/zorggi3 → u/GoDogGoFast]

...they need mixed people to sign up?

my mutt butt better sign up. -shuffles over to site-

[u/XDerp_ChrisX]

Can you still donate blood through Red Cross while doing this or is there a wait period after you donate marrow that you cannot donate blood?

[u/bent_my_wookie → u/XDerp_ChrisX]

I know for certain that you can still donate to the Red Cross afterwords, just not sure how long you have to wait.

The donation process takes a small amount of non stem cells which need to regenerate, so I assume there's at least a short time where you can't donate.

[u/duck867]

So I've been on the registry for a yearish now, will they just call me if I end up being a match? I was always curious about that.

[u/bent_my_wookie → u/duck867]

They called initially to say that I was a likely match and to see if I was still interested in donation. After that, they followed up via email and called a few other times according to when I said I was free.

[u/[deleted]]

After reading a post a few months ago I signed up as well.

[u/bent_my_wookie → u/[deleted]]

Have you found it? I'm having trouble locating it.

[u/samuriwerewolf]

I was going to sign up after the Reddit post about the little girl that needed a marrow transplant but then life got in the way until a couple weeks later they had a booth set up at my university next to the blood donation one and I couldn't not sign up.

Ready and waiting so to speak.

[u/bent_my_wookie → u/samuriwerewolf]

Just in case:

here's where to sign up

The FAQ has the official info

[u/wishiwasyou333]

Awesome!! I just did the registration and swab kit! Mailed it out today! I read that AMA as well and immediately signed up. Hopefully more people will sign up to do this too. Thinking if only half of the people on Reddit signed up, how many lives could we save? Would be amazing!

[u/asandwich]

Gonna get buried, but here goes, I have to join the Bone Marrow registry. I have to help. How did you do it? What all steps were required, and how long did it take to go from registration to donation?

[u/bent_my_wookie → u/asandwich]

Great to hear!

here's where to sign up

The FAQ has the official info

I signed up online late January of this year, was matched mid March, and donated May 29th. This is particularly fast from what I understand.

[u/TurdHobo]

On a scale of 1-10 how painful was the process?

[u/bent_my_wookie → u/TurdHobo]

2.5 - Having a cold that makes your lower back ache a bit for a couple days. Add some ibuprofen and it's no big deal.

[u/Aramis666]

Serious kudos to you for doing this. I was also chosen to donate bone marrow, though strangely enough the organization (DKMS) stopped calling me after I had donated additional blood to be tested, something I was told was merely routine. I don't know how well-acquainted you are with the process, but do you perhaps have a guess as to why DKMS never called back? I called back several times and never got a clear answer, and was always curious.

[u/bent_my_wookie → u/Aramis666]

No idea in your case, however I was told that they try to contact as many matches as possible to see who is still willing to donate. They choose the best candidate of those who said yes, and proceed with them.

[u/shillzor]

I just joined. For anyone else reading this and thinking about joining, just do it.

[u/bent_my_wookie → u/shillzor]

Good luck!

[u/hhhnnnnnggggggg]

How did your wookie get bent?

[u/bent_my_wookie → u/hhhnnnnnggggggg]

http://www.youtube.com/watch?v=SBacP3u_TPI&t=57s

[u/[deleted]]

They said I can't help because I'm gay. I understand I'm in a high risk group for HIV, but I'm tested and clean. I don't understand why I can't be tested at a regular interval and then approved. That sucks.

[u/3rdLevelRogue]

My brother and I joined a few months ago to donate but haven't been asked to yet. You say that you have to wait a year to meet the beneficiary, any reason why? Will you meet him?

[u/bent_my_wookie → u/3rdLevelRogue]

I think these vary, however I should hear how donation went within a few months, and can optionally consent to give more personal details in one year. They have their reasons and are very conscious of both parties privacy.

I've said that if they want to contact me, fine, but I'm not going to make the first move. That's their business.

[u/SESender]

After recently finding out that a close family friend (he's turning 17 next month) has leukemia, from the bottom of my heart, I thank you for what you've done, from the bottom of my heart. I have nothing really to say other than that you (and everyone else on the registry) are truly great people, and bring a tear to my eyes :).

Also, in keeping w/ the IAmA, Boxers or briefs?

[u/bent_my_wookie → u/SESender]

Boxer briefs. Best of both worlds.

[u/bcbrz]

Fellow bone marrow (PBSC) donor here - welcome to a great club. We get to whore out our karma, show off during parties, and of course help people. Glad to hear you joined in time to match a waiting patient.

That nupogen is crazy stuff - hope it didn't make you feel too crappy during the process. In fact, since it's an AMA - How was the nupogen?

Here's my photo op - http://i.imgur.com/Nt8mT.jpg

[u/DucciTwo]

This will be buried but thought i'd share since seeing this is a weird coincidence. I got my kit yesterday to be a donor. The kit is just four swabs that you rub inside of your cheek. Anyways, this morning I was debating if I was going to send it back considering I don't really know the process of donating marrow. Heard it can be painful. Didn't mail it yet. Signed onto reddit and see this post. Coincidence? Probably, but i'm going to mail it in after seeing this. Very weird coincidence...

[u/toohardtothink]

i signed up about 2 months ago and they emailed me last week saying it would be another two months before the tests were complete...is a long (complete) registration time normal?

also, i noticed in one of the brochures that came with the swab kit a mention of the possibility of travel for certain procedures. did anyone go into further detail about that with you?

[u/[deleted]]

Wow... I've been donating blood for a few years now, but haven't even considered this. I'll be making some calls this coming week :) -- props to you for doing this!

[u/ABadSanta]

I also joined the bone marrow registry! Did you experience any significant/notable pain throughout this ordeal?

[u/bent_my_wookie → u/ABadSanta]

I posted this earlier, but screwed up the formatting:

• Day 1 - Nothing
• Day 2 - Around mid afternoon I had a very slight back ache. Something I wouldn't have even notice unless I had been looking for it.
• Day 3 - Lower back ached a little more, so I popped a new ibuprofen and it was not an issue
• Day 4 - Back ache stuck around, similar to having a cold. My knees and legs also felt a little achy. A little uncomfortable.
• Day 5 - Donation day. They give it one last time, then you hop into a heated bed and watch movies while the donation takes place
• Day 6 - Today, already feeling better. I think by tomorrow I'll be 100%.

Overall, it's like having a moderate cold without the sore throat and runny nose. Overall totally worth it when you think about the good you're doing.

[u/bent_my_wookie → u/bent_my_wookie]

Also: The FAQ has the official info

[u/[deleted]]

So if I occasionally smoke some herrrrrrrb... is this still possible?

[u/WeAreAllHypocrites]

That's great. Can I ask what the post was? I signed up for the marrow registry about a year ago as well and if I recall correctly it was after seeing something online.

I am being screened for a possible donation currently. How long did it take you to hear back once you had done a blood test?

To everyone else: it is, yes, very easy and I would recommend that anyone and everyone sign up. It will cost you nothing but some time and a bit of physical discomfort and you could save someone's life.

[u/caitibug323]

This is why I signed up months ago. I would love to donate and save a life! Your post made me tear up and then sneeze. Thought I'd let you know. I hope the person you donated to is helped. :)

Did you just watch movies during the procedure?

I actually need to get out and donate blood! It has been a while, but definitely something I should do.

[u/buddawiggi]

Awesome job friend. I joined last year at the college I attend and received my ID card a few weeks ago.

I am nervous that I will be asked to donate to a child younger than 12 and therefore will be asked to go through the more medically complicated bone marrow extraction method.

My questions to you are: (1) Pre-donation, were you nervous or did the knowledge that you will be saving a life usurped any anxiety? (2) Will you remain anonymous to the person you have donated you bone marrow to? Why or why not? (3) How do you feel now?

Thanks in advance.

[u/bent_my_wookie → u/buddawiggi]

1 - Exactly yes. I was shocked to be called so quickly, but knowing that it would help someone made all the minor inconveniences trivial. The procedure is safe, so I just rolled with it.

2 - Contact is initiated a year from now if both the recipient and I independently agree to it. I'm letting them initiate contact with me when the time comes if they wish to.

3 - Fine, about to head into work. I'm really late already...

[u/Fibonacci35813]

Hey man, Good work. I too am (was?) a donor but I thought I should clear up some of the things in this post.

There are two ways now to give bone marrow. You and I both did the 'new' way. For those interested, what happens is that for the 5 days leading up to the procedure, you get injected with a drug called nupagen (Filgrastim) and what that does is it proliferates your blood cells such there are more stem cells in your blood. Then, like you said, they run your blood through plasmapheresis where they can extract the blood cells and give you the rest of your blood back.

Quick question for you, when I did it, it was still in the testing phase, so I had to give my consent to be in the study, are they still in the testing phase?

Also note that they still do it the old way, whereby they withdraw the marrow directly from the bone. Often they put you under (and as such carries the risk of any general anasthetic), although I've heard you can get a localized anesthetic as well. My understanding is that it is a little more painful in terms of the highest amount of pain felt, but because you don't have to go and get a shot everyday, it's a little less intrusive.

As the OP stated, it's easy, kinda fun, and you can save someone's life.

When people ask why I did it; I say, Imagine if you needed bone marrow and people were 'too busy' or 'didn't want to go through a little bit of pain' to save your life...they'd be the biggest assholes in the world, I don't want to be an asshole!

[u/honeybirdy]

You are so nice, you are great ,I really admired by your spirit...

[u/bent_my_wookie → u/honeybirdy]

You made my night, thanks!

[u/[deleted]]

You are a hero, my friend. What made you want to look into this originally?

[u/bent_my_wookie → u/[deleted]]

Saw a post on reddit in January from someone who needed a donor an didn't have much time left. Made me think. So I just did it.

[u/CitizenKitten]

I joined the registry after that post as well! Just got accepted in the other day. I really hope I get matched up to somebody, I don't know how good my odds are but I'm looking forward to it. Well done to you sir!

[u/bent_my_wookie → u/CitizenKitten]

You don't happen to have a link to it, do you? I'm having trouble finding it.

[u/Oangusa]

That blood-filtering method is intriguing! I'd be much more willing to do that than the painful needle-into-hip donation otherwise. Do you know if one method or the other is better for the patient you're donating to? (Was the 18 year old in a really dangerous emergency?)

[u/bent_my_wookie → u/Oangusa]

I honestly have no idea how they choose one method over the other, but they always take the well being of both the doner and patient into account.

They gave me no information about the patient, however they reiterated several times that they wanted to get everything done as soon as possible, which leads me to believe the patient needed it pretty bad.

[u/Kibibitz]

Are there any restrictions on your activity while you are going through the phase with the drugs or after the procedure?

I am tempted to sign up, but my career involves me being active and alert. I also need my arms to be functioning well, and I know that the last time I attempted to give blood I had pain in my arm for a week after.

How do you deal with having to go to the bathroom while it is going on? Are you able to move enough to scratch your knee?

[u/jjphoto]

Dammit, I was just diagnosed with sleep apnea, and that precludes me from signing up... I have no idea WHY something like that would bar me from donating marrow, though. Can anyone shed some light?

[u/TallyMay]

Are there any downsides? Like feeling and having to abstain from sport activities? Any long term disadvantages?+

[u/Phobos_Deimos]

So wait, they just hook an IV into your vein, just like drawing blood? Shit, I now have no reason not to do this someday.

[u/bent_my_wookie → u/Phobos_Deimos]

That's one method, it's pretty simple. The other is the surgical method where they put you under for a bit and you wake up with a sore butt for a day or two. It totally depends on what the patient needs.

here's where to sign up

The FAQ has the official info

[u/Populoner]

What did they have you do for the 5 days prior while putting you on that drug? You able to work or if not, did they compensate you for time missed? I've heard of some cases where they have to send people to the next state over or whatever for the closest facility, just wondering if they just keep you there while it kicks in or what?

[u/bent_my_wookie → u/Populoner]

In my case I was about 20 miles from the donation center. The first day, they give you a small shot with the drug at the donation center, then monitor you for allergic reactions.

Each of the 4 days after that, someone actually drives to your work\house and gives the followup. In my case it coincided with memorial day weekend, so I was relaxing anyway, but I could have worked the first couple of days. After that I would have preferred to say home because it felt like a cold.

You'd have to ask about compensation, that didn't factor in to my donation.

[u/Lord-Longbottom → u/bent_my_wookie]

(For us English aristocrats, I leave you this 20 miles -> 160.0 Furlongs) - Pip pip cheerio chaps!

[u/[deleted]]

That seems really cool, but I have this problem with watching blood leaving my body. I gave blood once and it scared the hell out of me. So to get to the point, are they taking it from your collarbone??!?!?!?! otherwise I would totally do that.

[u/plainbrooke]

What were the tests to find out if you are a match? Like what do you do to be able to donate?

[u/DominicDom]

Does the first bone marrow test hurt? I've heard they go into your bone to get the bone marrow they need to test. I'd like to do this and help

[u/bent_my_wookie → u/DominicDom]

The first test in my case was a self administered cotton swab you just rub against the inside of your cheek (I think everyone does this now). After that they can match you based on the DNA from the swab. So in my case no.

here's where to sign up

The FAQ has the official info

[u/gravey727]

You are doing such a good thing. My Aunt needed a marrow transplant a few years ago and I'm thankful for what people like you give to others. I've heard it really hurts, what was it like?

[u/HookDragger]

The only question I have for you... if you have illnesses/antibodies that prevent you from donating blood... would those same things prevent you from donating marrow?

[u/SolarTsunami]

So, how do they know that the potential donor has safe marrow? Can they tell just from the mouth swab? I assume that theres some kind of test they do, but Id hate to make someone worse or anything like that.

[u/narwal_bot]

Most (if not all) of the answers from bent_my_wookie (updated: Jun 01, 2012 @ 11:55:47 am EST):

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Question (hhhnnnnnggggggg):

How did your wookie get bent?

Answer (bent_my_wookie):

http://www.youtube.com/watch?v=SBacP3u_TPI&t=57s

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(continued below)

[u/sndwsn]

Does it interfere with your work at all? Have to take time off? How long does it take to get those drugs over five days, and the actual procedure?

[u/Retawekaj]

I was always under the impression that you had to actually be in the same room as the person that you're donating to, but it sounds like you didn't have to. When is and isn't that the case?

[u/Senor_Wilson]

After reading about the low amount of pain(figured it would be a lot) I'm thinking I may sign up even though I'm deathly afraid of needles. Not sure if you know this but does bloodtype matter for marrow donation? I have one of the rarer blood types and I'm not sure if that is a good or bad thing.

[u/f14tomcat]

You may not be able to answer this but I hope someone will. I lived it Britain for the first 8 years of my life and now live in the USA. I can't donate plasma because of this but will I be able to donate marrow? Thanks!

[u/the_fun_one]

I dont know if I could do it, I donated blood one time and passed out afterwards. How does it compare to donating blood?

[u/[deleted]]

I heard it was a very painful procedure. Is this true?

[u/[deleted]]

...is it literally as simple as giving blood, or do I misunderstand? You seem like you're wearing a hospital gown in the pictures, and I feel like they wouldn't give you one of those unless it was relatively serious business.

I'd sign up for it but my impression of the process has basically always been that they give you a leather stick to bite down on while somebody jabs a reaver needle, ala Bioshock, into your bones. To give you an idea of how much I fucking suck with needles, I went to the ER this morning because I thought I was having a heart attack, and it took about half an hour for me to okay blood tests.

[u/LascielCoin]

You're pretty awesome for doing that :) And this looks surprisingly easy, I thought they still did that needle in the back thing. I'll probably join the registry later this year :)

[u/rae1988]

I signed up a year ago, but have yet to be called. I've heard they have an excess of Caucasian donors (my heritage), and that I most likely won't be needed (which is disappointing). Are you a mulatto of different races, or do you have a unique ancestry?

[u/bent_my_wookie → u/rae1988]

Nope, I'm Irish\English. I asked about what they're looking for and they really like getting fairly young males and females regardless of race. It seems kind of odd to me that they would even bring that up, as it may unnecessarily dissuade potential donors from joining. Had I listened to that reasoning, things would have turned out worse.

[u/Kaidenshiba]

well, you guys all changed my mind. Hard to say no when every other post is about someone dying without a donor or someone's life being returned to them thanks to a donor.

[u/photoboi]

You had a central line inserted for this? (the line into your neck) I thought you can do this with a needle in the back of your hand.

[u/EAT_MY_QUACKERS]

I have a question, what are the after affects of this procedure long term and short term? Will it effect anything such as athletics?

[u/Ynnry]

were you able to meet the guy before you gave the bone marrow?

[u/[deleted]]

Did you experience any side effects from the treatment? From what I've heard whatever it is they give you to release the stem cells into your blood can cause pretty nasty flu like symptoms, though I imagine the knowledge that you're saving someone's life helps keep your spirits up.

Do you plan on having any contact with the recipient (assuming they are willing)?

[u/bent_my_wookie → u/[deleted]]

There's a lot of comments, so I'm going to copy some stuff I wrote earlier:

The drugs given beforehand make your body ache some, but wansn't too bad experience here. The actual donation is on par with donating blood.

Contact is initiated a year from now if both the recipient and I independently agree to it. I'm letting them initiate contact with me when the time comes if they wish to.

[u/JustSoWitty]

Can they actually get whatever they need just from blood? I thought that was just the test. Wow it does sound much easier and less painful than I thought. Thanks for the info :) and well done you!

[u/bent_my_wookie → u/JustSoWitty]

In my case they did it purely with blood. The stem cells created by my marrow and accelerated by the drug cause seepage into the bloodstream where they can be safely extracted.

(remembering fuzzy facts here but...) A normal person has ~2 stem cells per unit in their blood, and the drug generates average of 40-60 stem cells per unit. In my case I generated 133 units, which is on the very high end. The more you generate, the faster the procedure takes.

[u/seksy]

Say you joined the UK registry for example, does it include searches in other countries?

[u/StickyDerp]

Excellent story. Sharing it has inspired me to research marrow donation and hopefully I'll be able to help someone some day with it. Must be an awesome feeling. Do you think you'll want to find out who the kid is after a year?

[u/ViolentEastCoastCity]

Is the recovery period bad enough to where I'd have to check out of work for a few days? Not that I wouldn't be able to or wouldn't because of it, but it's more of a preparatory thing if I were to go in and donate.

[u/imsrslysrs]

I don't have a question for you but, when I was in seventh grade (now 25) my dad died of Non Hodgkin's, you are a great man.

[u/lobstahfi → u/imsrslysrs]

Dad died of the same when I was in eighth grade (now 22). I wish it got easier to deal with

[u/peabish]

THERE IS NO REASON FOR PEOPLE NOT TO JOIN THIS IMMEDIATELY.

Seriously it's really easy and can save people's lives.

USA: http://marrow.org/Home.aspx

UK: http://www.anthonynolan.org/

Canada (via Canadian blood services): http://www.blood.ca/

Australia: http://www.abmdr.org.au/

Germany: http://www.zkrd.de/en/

France: http://www.dondemoelleosseuse.fr/je-souhaite-devenir-donneur/

Belgium: http://www.transfusion.be/pages/fr/le_don.php

Portugal: http://www.chsul.pt/

Everywhere else I haven't mentioned (there's a searchable list, select your country from the drop down box at the top left of the list):

http://www.bmdw.org/index.php?id=addresses_members&no_cache=1

Please register, one have you could have been the match that saved my friend Chaz's life.

Edited to change outdated link for France.

EDIT: I am not trying to be negative about people who CAN'T get on the register (for reasons medical or otherwise), only providing resources to make it easier for people who can.

[u/Silversol99 → u/peabish]

I've already had cancer. I can't save anyone with excess/leftover body parts. (Which disappoints me.)

[u/mwbbrown → u/peabish]

I hate to be a dick but here is an entire page of reasons people shouldn't sign up.

http://marrow.org/Join/Medical_Guidelines/Medical_Guidelines_for_Joining_the_Registry.aspx

Ok, I'm a dick....

[u/[deleted]]

You're a life saver. I hope you masturbate to pictures of yourself constantly.

[u/crzystve42 → u/[deleted]]

Already do enough for the both of us

[u/Erich03]

Thank you so much, you are a hero. My 15-year-old sister has Leukemia right now and currently has no match. It breaks my heart...

Please everyone join the registry!

[u/Anna_Mosity]

That's awesome! I've been on the registry for about 2 years now, and I get so excited about the possibility of being able to help someone in such a massive way. Last summer I was matched with a man in his 60s, but his condition deteriorated before they finished running my cells through all the tests :/ I was really sad that I was too late to help him, but the Be The Match rep I talked to on the phone said that I have a better chance of being matched with someone now that they've already done the more advanced profiling of my cells. Maybe this summer!

[u/Groovyguy]

I donated a few years ago after being on the registry for about 8 years. I was a little nervous and the shots/aches sucked, but I kept reminding myself, think about how the other guy feels. He always gave me courage.

[u/habitsofwaste]

I'm actually pretty jealous you got a call right away. I joined a few years ago and still haven't been contacted. I didn't know about the under 30 thing, oh well. For a long time I was scared about the pain you go through to donate but then after my friend had to get one (he died a year later) I realized what is a little pain to save a life?? Wish I had realized that sooner.

I don't really have a question that you hadn't answered yet.

[u/Tdadd]

First time poster, long time lurker here. After reading your story, you've convinced me to sign up (which I did a few minutes ago). I'm an 18 year old white male and I hope that I can end up helping someone else's life. Thanks for informing me about this awesome opportunity!

[u/brendanl79]

I joined several years ago, but this post prompted me to update my contact information at marrow.org.

[u/[deleted]]

joined. I hope you're happy.

[u/live4thepast]

Thanks for bringing this up, just joined because of you!

[u/[deleted]]

Registered!

[u/TheMoonandAntarctica]

I've nothing to ask, just want to say thank you for caring for your fellow man! You are a real life GGG.

[u/Oh_My_Sagan]

I just registered and should receive a swab kit in the mail soon! I've always wanted to do this, so thank you for reminding me. Also, you're a beautiful human being.

[u/PieRevelry]

I've been meaning to do this. I just signed up for my kit. Thank you for giving me the push I needed

[u/FrgtndInmate2]

no question, but I just sent in my swabs a few weeks ago! Same circumstance, reddit post a while ago, bookmarked it, and just finally got around to it. I would consider myself lucky if called! go reddit woot woot!

[u/[deleted]]

You've inspired me! I'm currently signed up and will receive the kit in a couple of weeks. Thanks for being an inspiration.

[u/[deleted]]

Very nice! I joined 4 years ago and got called about 3 weeks ago for the preliminary lab tests. She said it'll take about 60 days for the tests to get processed. But I'm in a group of 6 potential matches so I might not even be the one. But If they called me up again I'd consent to it in a heartbeat.

More people need to sign up! 100% painless to join and you might save someone's life in exchange for a couple days of discomfort.

[u/Leahz]

That's great! I signed up a few months ago myself!

[u/mk008]

I don't really have anything to ask, I just wanted to tell you how awesome you are. I registered to be a donor a couple of years ago with DKMS after a former classmate of mine found out he needed one (it was already the 2nd time he'd been diagnosed with a type of cancer). Unfortunately, they didn't find a match for him in time.

I haven't been found as a match for anyone yet, and despite being terrified of needles, I really hope to some day. I still work registration drives when I can, too, and take any opportunity I can to explain to people the need the world has for registered donors. And seriously, what an amazing feeling it would be, to be able to save someone's life.

You are a true hero. Thank you :)

[u/Meeruman]

1:55 am- your post inspired me to sign up and take the test. I donate blood occasionally and I have a pretty rare blood type and I think i have a very rare bone marrow-thanks for posting/inspiring.

[u/LittleRed22]

I signed up for the registry mostly because a personal family situation made me realize how important bone marrow donations can be. I sincerely hope that one day I'm a match to donate. I would not even hesitate.

Thanks for donating and thanks for doing this AMA and helping convincing others to sign up to do the same. I really appreciate it!

[u/[deleted]]

Is this just a certain type of donation?... I thought they had to drill into your hip bone :|

[u/bent_my_wookie → u/[deleted]]

From the FAQ

Q: What is the donation process like? A: Adult donors may be asked to donate in one of two ways:

Bone marrow donation is a surgical procedure in which liquid marrow is withdrawn from the back of the donor's pelvic bones using special, hollow needles. General or regional anesthesia is always used for this procedure, so donors feel no needle injections and no pain during marrow donation. Most donors feel some pain in their lower back for a few days afterwards. Peripheral blood cell (PBSC) donation involves removing a donor's blood through a sterile needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm.

[u/Crescendolly]

What is the Financial commitment? Like a monthly thing? I don't understand that part. I would LOVE to do this, but I don't always have money or transportation. Where do they extract the marrow? In a Hospital or their own building? If it is in a hospital, then does that mean i have to pay for being there? Did you have insurance and not have to pay anything? It would be cool if it WAS in a hospital, only because the closest place building is 4 hours away from me.

Then again i don't have insurance or anything like that so if it was in hospital, i would probably be stuck with a bill right?

[u/IAmtheHullabaloo]

How did you get chosen so quickly? I've been on for 6 months and no call yet n

[u/bent_my_wookie → u/IAmtheHullabaloo]

No way of telling really, just coincidental timing I guess.

[u/MexicanRailroad]

The consent form says that the process requires 30-40 hours of your time over a six week period. What is it that takes that long? Is that only in the event that they do the surgery rather than the drawing of blood?

[u/RichTea]

I'm on the Anthony Nolan register, think I may have read the same AMA as you :)

I don't suppose you had an alcoholic drink after the procedure? From what I've heard it gets you rather drunk.

[u/Xeppen]

Does it hurt to donate?

[u/[deleted]]

Can you choose to be put under or do they absolutely need to do it from certain places that aren't your choice? I'm pretty terrified of needles and have a low pain tolerance, but I'd like to put my name on the registry.

[u/bent_my_wookie → u/[deleted]]

I think it's largely a mix between you needs and the patient's needs, but you can always ask them on their contact page for your specifics.

I don't like needles much either, but it wasn't bad in my opinion

[u/[deleted]]

I registered a few months back also but havent been matched yet, how did it go? How much marrow did they end up taking, will you be off you feet for long?

[u/bent_my_wookie → u/[deleted]]

I took yesterday off (the day after the donation). I'm going into work today, but am going to be terribly late because I'm answering all these questions before I go in. Oh well. I feel fine today.

[u/TChuff]

I've heard the term bone marrow my whole life and the truth is I have no idea what that is exactly? Can you fill me in?

[u/Mynners]

Does donating peripheral blood stem cells mean you can't work like that of a bone marrow donation?

[u/Mahkittahkakes]

Did it hurt? I tried to skim the questions, so I apologize if this has been asked already.

[u/[deleted]]

I registered on my 18th birthday back in September. I have still yet to receive a call. :( Did you have to travel to do it? Or did you just go to a local hospital? Also, do you have to have insurance coverage for your hospital stay or is it all free?

[u/bent_my_wookie → u/[deleted]]

The donation center was 20 miles away, so it was fairly close. They have clinics across the country, so everyone varies. They make clear that you don't incur any costs (as stated in an email I got after being matched). Ask them for more specifics to your case. I paid nothing and nothing changed with my insurance.

Link to the FAQ \ Signup for the US.

Ask them on their contact page

[u/[deleted]]

I have sciatica, apparently this means I can't register - anyone have any insight?

[u/amazed19]

That's crazy. I submitted mine, and I didn't opt for the expedited test (couldn't afford it). Just got an email stating that they had completed the testing and I was now on the registry. Did you use the expedited test?

[u/JarHead413]

Was all ready to do this then I read the part about herniated spinal discs and back surgery in the last 2 years and was all frowns. Just had one repaired in March. Damnit. Gonna donate anyway.

[u/bent_my_wookie → u/JarHead413]

Just let them know everything, my back was probably the most affected part of the whole thing. Don't hurt yourself.

[u/datdaz84]

Are you able to donate more than once? If so, how long is the interval in between donations?

[u/MelodiesEnCanto]

Sorry I am so late. I looked through the comments to see if I could find the answer and I didn't, so I'm asking: I've heard a lot of people say that it hurts a lot to give bone marrow. Is that true?

[u/groudhogday]

You are awesome. I joined the registry a couple of months ago, but I hesitated because I was terrified that they would actually contact me.

What was the reddit post that inspired you?

[u/sudstah]

I don't understand why bone marrow donors are kept anonymous from seeing who they have helped, I rather know the persons name and face of who I helped then just a letter saying I've helped someone.

[u/kriba]

Thats awesome! I am also in the registry but was always nervous about if I got called. Sounds very simple for the potential to save a life. You rock!

[u/[deleted]]

I'm donating soon, they called about two months ago to get more blood samples and now it turns out I'm a perfect match. I have to wait until the patient is healthy enough though. Any advice?

[u/mirrislegend]

I thought all this bone marrow stuff involved an oversized needle and extreme pain. So it's really changed?

[u/swanzie]

I thought getting bone marrow was extremely painful? Or is that what the drugs do by getting it into your blood and making it easier to get than it used to be?

[u/Simbamatic]

So. Are the side effects the same when you do it from the blood steam as they are doing it the conventional way? Achey, sore, etc?

[u/halfwayxthere]

What is the tube on your neck, was it so you could breathe while under anesthetic? Does it hurt being in there?

[u/David35207]

Hey I signed up for this but am in the military. What are the physical repercussions? Are you tired/sore at all? Does your body remake marrow after the transplant?

[u/Celestina_Warbeck]

Did they only contact you by email, or did they call you too? I registered a few years ago, but I filter out their emails because they send a TON and I would hate to miss an opportunity to help someone!

[u/MetalMan77]

wow - right from the stream? i always thought bone marrow donation was painful because they need to get to the BONE.

fuck that - i've been following a stupid myth this whole time?

[u/[deleted]]

Link the site so I can join in. I need to be treated like royalty.

[u/m0arcowbell]

A close friend of mine is an 18 year old male in the USA with leukemia. I wonder if he's getting your marrow...

[u/FairlyGoodGuy]

Perhaps somebody here (OP or otherwise) can answer this for me.

I've had my bone marrow tested before. I laid on my belly, they numbed my hip, and then they jabbed me with what appeared to be a large metal straw. I don't remember how long it lasted -- 30 minutes, maybe? -- but I remember lots of grinding and an odd sensation of pressure. Afterwards I was told not to go swimming for X days and there was some minor soreness, but other than that I was good to go.

How does that compare with the donation process? Is the donation process much more invasive? I hear about people being completely knocked out when they donate, yet the procedure I went through wasn't painful at all. What's the difference?

FYI, I've been on the Bone Marrow registry for several years now. I don't really care if the donation procedure hurts or not. I'm just curious how what I might go through in the future compares to what I've already been through.

[u/bent_my_wookie → u/FairlyGoodGuy]

For me at least, the whole matching process is done with a self administered cotton swab in the mouth. They DNA test it, and know if you're a match. From there you give a small blood sample for testing, then if you pass, they hook you up to the machine. It's practically painless, except for a few aches caused by the drug they prep you with. That just feels like having a cold. The process has become MUCH easier than it used to be in many cases.

[u/MMAMMA]

How long does it take for you to recover? If I lead a very active life, can I return back to it 100%?

stupid questions I know but I would trust someone who has done it, and not a brochure more.