EDIT4: Taking a break to finish up and head home from the hospital. I will continue answering questions later on this afternoon and evening, although I'm told I'm going to be pretty tired for the rest of the day. Thanks to others who have provided info on this procedure.

Please go to www.bethematch.org and sign up to donate. All it takes is a couple of minutes to fill out your information, then you receive some cheek swabs in the mail. After you send them back, you're on the registry.

Only about 1 in 540 people are selected to donate once they've signed up. About 80% of those give through a PBSC donation, like I did. This involves 5 days of injections to stimulate your bones to release stem cells into the bloodstream. The injections cause very mild pain in bones like your hips -- like having the flu for a few days for most people, for me, it was even easier. On the fifth day, the donor visits the hospital to undergo apheresis, a procedure where they run your blood through a machine and remove stem cells. It's super easy. The worst part about it is that it's boring (for me, it lasted about 4 hours, but can last even longer)... but if you're doing a reddit AMA, it goes by very quickly. :)

Please sign up!

EDIT3: Almost done here. Apparently, my blood is packed with stem cells. I will continue answering questions throughout the day... and once they take these IVs out I can type with both hands.

Don't forget to sign up: www.BeTheMatch.org

EDIT2: Thanks to Lyralou for pointing out that registries are desperately in need of donors of color. Sign up! http://www.reddit.com/r/IAmA/comments/1mklrw/i_am_donating_bone_marrow_right_now_ama/cca5i6h

From StvYzerman: "As many have said, we desperately need more minorities on the registry. A caucasian patient has about a 70% or greater chance of finding a match, while an African-American has only a 30% chance or less. Other minorities have even worse numbers."

EDIT: Do I look like I'm in pain? http://i.imgur.com/[removed]


I'm at the Nat'l Institutes of Health undergoing an apheresis procedure to remove stem cells as part of a bone marrow donation to an anonymous patient suffering from leukemia (a PBSC donation).

I highly recommend signing up for the Bone Marrow Donor Registry at www.bethematch.org. Save a life!

AMA! (I'm typing with only my left hand so be patient.)

http://i.imgur.com/xa6esda.jpg

Mods, I'll send proof through PM.

To sign up in other countries (thank, u/DonateYourMarrow):

Germany

Sweden

United Kingdom

Another UK

Ireland

Brazil

Italy

Denmark

EDIT: Correct link here: http://www.blivdonor.dk/index.php/knoglemarv (thanks, Lazin)

Canada

Norway

Another Canadian

France

Finland

Map of Spanish Donation Centers

Active Duty US Military

Netherlands

Czech's

Greece

Chinese-Canadians

Another American

Belgium

South Africa

Switzerland

India

Australia

Japan

For the Jews

www.deletebloodcancer.org (from u/KnightofCamelot)

from kzilla03: I actually work for an organization in Southern California that does recruitment in minority communities. If you have room for a few more in California on your list the org I work for is called A3M (Asians for Miracle Marrow Matches www.a3mhope.org) and a similar org in Northern California called AADP (Asian American Donor Program www.aadp.org). Although Asian is in both our names, we focus on registering any minorities as it helps diversify the registry.

Comments: 1264 • Responses: 41  • Date: 

Pots_And_Pans1290 karma

Once your bones are hollow, please follow up with an AMA about your life as a bird.

rhcpds71292 karma

CACAW!

edit: Of course this is now the top comment. :) Have to hijack it with info.

KimberlyInOhio373 karma

I've been on the registry since the 90s and haven't been called. How long were you registered before you were called?

rhcpds7334 karma

Less than 2 yrs.

KimberlyInOhio193 karma

Thank you for volunteering to donate marrow!

rhcpds7146 karma

To you, too!

brickonwheels306 karma

I want to mention if it hasn't already been said below, but donating marrow through an apheresis procedure is nearly painless and does not involve a giant needle as did procedures previous to this. I donated years ago and aside from some discomfort of having to sit in a chair for a number of hours, saving a life couldn't be easier.

rhcpds7111 karma

Agreed!

dunnowhatnametouse275 karma

A good friend of mine has aplastic anemia and requires bone marrow, but they can't find him a match. Thank you for what you are doing.

rhcpds7182 karma

Good luck to your friend. Thx for the message.

dunnowhatnametouse71 karma

<3 do you know some one in need, or are you just big hearted and awesome?

rhcpds7150 karma

Have known two people saved by these procedures. But this donation is to a stranger.

dunnowhatnametouse71 karma

I hope that this AMA can provide more people with the guts to do it too.

rhcpds749 karma

Me too!

historicalreference265 karma

I don't have any questions - just wanted to say thanks.

My wife is alive today because someone like you went to the trouble to make a gift of bone marrow.

It's been 13 years since her transplant. My son - approaching his 15th birthday - has grown up knowing his mother because someone did exactly what you're doing right now. I have my wife, her parents still have a daughter, her siblings a sister, her many nieces and nephews an aunt, and so on.

Thank you.

The word hero gets tossed around a lot these days. So much so that the word's meaning has eroded somewhat over time. In the truest sense of the word, you and people like you are heroes. What might feel like a simple sacrifice for you may literally be life for someone else.

Well done.

rhcpds788 karma

Wow, thanks. People like your wife give me the courage.

Hung_Like_A_BlackGuy120 karma

Hey man, good on you!

I just donated back in June

I ended up sitting for a little over 6 hours, how long are you supposed to be hooked up?

rhcpds7114 karma

3.5 hrs total -- I just found out!

rhcpds766 karma

They don't know until about 2 hrs in. Everyone is different.

Thx for the support.

grant0117 karma

Please check your inbox (the envelope icon at the top right of this page) - we need better proof than what you've provided. Thank you! - Mods

rhcpds7124 karma

Sent.

TigrGoRawr85 karma

I've heard that the procedure is a pretty painful thing to go through, i was wondering how you deal with the pain and also thank you so much for being helping those who need it. I'm on donor registers and we definitely need more people like you!

Edit- To everyone replying with their experiences, i am now looking at whether i am eligible for donation! :D

rhcpds7142 karma

A PBSC donation is not very painful. If you're reluctant, be comforted by the fact that only about 1 in 540 of those who sign up actually end up donating, and about 80% of the time it's through a PBSC (peripheral blood stem cell) donation, which is non-invasive and relatively easy. That means that those who sign up only have about a 0.037% (about 1 in 2700) chance of donating bone marrow through a surgical procedure (the odds of getting struck by lightning in your lifetime, 1 in 3000, are only slightly less), and a 0.15% (1 in 670) chance of giving through a PBSC donation. Do it!

mattysal76 karma

Congrats and thanks for what you're doing! I am also a match and have my physical exam coming up in the next couple weeks. I believe my donation will happen at the beginning of next month. I just found out yesterday that since I have a mild case of psoriasis, I can't donate via the PBSC method... I have to do the surgical marrow donation. However, I'm still moving forward with the process. A few days of pain and discomfort is worth it to be able to save someone else's life.

I have been on the registry for 10+ years. Those of you who want to donate but haven't been a match yet, be patient! Your day may come when you least expect it!

For those who aren't on the registry (especially men... only 28% of the registry is men, and many refuse to donate when they are a match), PLEASE consider joining... you could save someone's life!

http://bethematch.org/Join/Join_the_Registry.aspx

rhcpds730 karma

Good luck! The surgical procedure is a bit scarier, but so worth it. Thanks for doing it.

IAlreadyAteMyBanana47 karma

Finally joined Reddit after 2 years lurking to respond here. I was just called by Be The Match registry yesterday as a possible match to someone. I'm going in to get blood drawn soon to confirm that I'm a good match and start the donation process if I am selected.

Thank you for doing this AMA! You've taught me a lot and really taken all of my apprehension away. I've told myself that whatever I go through, it's nothing compared to the person I could help. But reading your responses has really helped me as well.

I've been on the registry for roughly 2 years like you, and joined because a close friend had Leukemia (and has since beaten it through a marrow donation). I'm glad to hear your procedure is going well and thanks again!

rhcpds717 karma

Embrace the experience. It's truly amazing.

unusualtomato43 karma

My current roommate was diagnosed with leukemia two years ago and it was a person just like you that saved his life. He ended up meeting his donor last year, very cool experience.

rhcpds728 karma

So glad to hear that.

I do hope to meet the recipient.

Breheart33 karma

Just wanted to say thank you to the OP and everyone else signing up, this is huge. My boyfriend is going through treatment for Hodgkin's Lymphoma which is a blood cancer of the immune system, which includes the lymph nodes and bone marrow. He is going through chemo and radiation, but in the future if things don't clear up this first round he may need a bone marrow transplant in the future. Through our support groups it has become clear to me how common these procedures are for blood cancer patients, leukemia, lymphoma and more. Thank you for being a life saver!

rhcpds720 karma

A friend's brother had this and had a similar experience. After exhausting a lot of other treatment options he got a transplant. Has been in remission for 2+ years. My best to your boyfriend. Stay strong.

RajonR928 karma

Can you please explain the process?

rhcpds747 karma

A PBSC donation requires 5 days of injections of a drug called Filgrastim to stimulate stem cell production in your bones and their release into the bloodstream. On day 5, you undergo apheresis (what I'm doing now) which flows your blood through a machine to remove the stem cells.

http://bethematch.org/Registry_Members/Donation/Steps_of_Donation.aspx

shat9328 karma

Thanks for doing this! I was matched with a recipient from the Canadian registry (OneMatch) and donated this past July. It was a great experience, and I urge everyone to sign up for their national registry. My question though is how exactly are you typing this?? I couldn't even move my left arm the needle was so huge!

rhcpds719 karma

Right arm is immobilized, but the needle in my left is placed in a way that I can move it.

kummajainen26 karma

I thought they dug out the bonemarrow from your bones with a spoon.

rhcpds712 karma

Haha, nope.

MIOFTW20 karma

how long does it take? Does it hurt ? Do you get paid or is it like donating blood ?

rhcpds719 karma

No payment. Hasn't hurt me much at all -- minor aches for a few days.

5 days of injections, a full day of a procedure called apheresis on day 5.

See my other comment on this: http://www.reddit.com/r/IAmA/comments/1mklrw/i_am_donating_bone_marrow_right_now_ama/cca3jcw

mastersun14 karma

[deleted]

rhcpds718 karma

About 80% of donations are completely non-surgical, from what I've read. Look up PBSC donation.

amnicols14 karma

Thank you for your generous and painful donation! You never know which of us may need that...I am sure the anonymous patient is truly grateful for your sacrifice, as most of us are.

rhcpds729 karma

Not too painful, actually. Some minor bone pain in my hips, back and head for a few days -- no worse than the flu. Now the apheresis is mostly just boring. :)

Most donations are now done in a non-invasive manner. It's a very common misconception that being a donor will necessarily involve tons of pain.

ekaceerf13 karma

What happens if you have to go to the bathroom while you are sitting there?

rhcpds715 karma

I pee in a "urinal" which is basically a bottle.

ManicParroT11 karma

Has this cost you any money?

Will you get to find out anything about the recipient?

rhcpds730 karma

No money. All covered by recipient's insurance.

I know his age, country, and illness. After a year, if we both consent, we can meet. But no identifying info will be shared before then.

laydownlarry9 karma

how is the last link "for the jews"?

rhcpds78 karma

I copy/pasted from another AMA. The registry is often short of people of certain ethnicities, so I bet there are sites/orgs that specifically target donors of certain backgrounds.

Unheard8 karma

My 2 year anniversary of being on the Be the Match donor list is this month and I just recommitted to it.

I joined in honor of my sister who we lost to Hodgkin's Lymphoma. I highly recommend people to join as well.

rhcpds79 karma

So sorry for your loss.

MajorPlayer878 karma

[deleted]

rhcpds78 karma

Best is knowing I'm giving someone their best chance at survival.

There hasn't been anything too terrible about it. I barely felt ill at all. Just very minor aches in my hip bones and a mild headache.

TruGabu7 karma

what colour are the walls?

rhcpds79 karma

Haha. White!

chornu7 karma

Hey, good on you! I signed up about a year ago to be a donor. Thanks for spreading the word on signing up!

rhcpds710 karma

Lots of people looking for a match!

icepick3146 karma

I was contacted as possible donor match earlier this year and told I may or may not be exact match they're looking for and advised if I don't get any more contacts, I was not exact match they're looking for.

After a month, I was not contacted again and did not donate.

Good for you to volunteer for bone marrow donation.

Would you still have gone through if you had to do marrow donation instead of PBSC donation?

rhcpds713 karma

I would have been a bit nervous, but yes. Hard to say no to saving a life.

hyperFresh6 karma

Does it hurt? Can you describe what they're doing to you?

rhcpds712 karma

IVs in both arms. Taking blood out one arm, running it through a machine to get stem cells, putting it back in the other arm. It's called apheresis.

TheSanctified4 karma

I thought bone marrow transplants involved a dangerous/painful surgical procedure. I assume this is just to extract stem cells?

rhcpds77 karma

Bone marrow transplants are also to get stem cells -- that's where they're produced. Most of the time these days they can get those cells non-surgically through a nearly painless PBSC donation. Basically they stimulate your bones to release the stem cells from the marrow into the blood stream, then collect them from the blood.

SnowBean4 karma

How long was the process when you were actually chosen? I've recently joined the registry (thank you for joining by the way!) and was wondering how much of your time was actually given to this process, and what tests you had to go through

rhcpds74 karma

One quick workup after the first call to take a blood sample. Then a morning's worth of tests after I was determined to be the best match -- EKG, chest x-ray, blood tests, etc.

Then 5 days before the apheresis, 30 min. each day to receive injections.

hukech4 karma

How did you hear that you got a match? How did you react? Did a hospital call you?

rhcpds76 karma

I got a phone call late one night from someone at the registry. It was exciting.

fatmama9234 karma

Do you have to pay to be added to the registry?

rhcpds76 karma

Not that I remember.

Go to bethematch.org. Fill out basic info. They'll send you cheek swabs in the mail. Send them back and you're done.

cr1ggles4 karma

hey OP. nice work. Do you know how long does it take to recover from a donation? is it similar to a standard blood donation?

rhcpds79 karma

Yep. A few days for the PBSC donation. Back to work tomorrow.

Justthetipok3 karma

I saw the story a while back about a D1 athlete who gave up his career to donate. How long is it suppose to take until you return to prior level of function? Also if you don't mind me asking would you consider yourself a very active person?

rhcpds77 karma

Not very active.

A PBSC donation only requires a few days for recovery. Modern medicine is amazing. These days, bone marrow donations, which are actually stem cell donations, are non-surgical about 80% of the time.

Tronosaurus2 karma

I've heard bone marrow donation is painful as balls. How has the experience been for you?

rhcpds74 karma

See my other comments. Not painful at all.

HIGHerElevation2 karma

Have you been able to sleep during the procedure? I donated marrow from my hip bone and "T cells" through peripheral apheresis. I slept through most of the apheresis procedure. The only thing that woke me up was when I was too hot because the blood warmer on the return IV was up too high. I hope your recipient does well and that you have a speedy recovery!

rhcpds78 karma

Hard to sleep through an AMA!

hamstock2 karma

I'm so glad everyone on this thread is either already registered or seems positive about it. Upvotes for all and good on you OP.

Do you wish to meet the person you're donating to next year?

rhcpds74 karma

Definitely.

Pikistikman2 karma

Should you be redditing whilst giving marrow?

rhcpds73 karma

What better way to pass the time?