Hey Reddit, I just finished donating stem cells to a leukemia patient I matched with through the National Bone Marrow Registry! AMA!

I have always wanted to register for this. Thanks for sharing. How was the procedure?

The procedure itself was this morning and it was pretty mellow. I had a needle in one arm and a plastic tube in another and my blood was just pumped out, filtered, and pumped back in. It took about 4 hours or so to finish.

I've been on the registry for years and not matched. I selfishly want to be matched and donate so that I can help someone in need in this relatively small way. I donate money and time to other charitable organizations also, but I have this overwhelming sense of jealousy that you were identified as a match.

I felt the same selfish desire to be matched and a selfish satisfaction when I finally got matched. And a subsequent selfish bummer when my planned donation fell through last time. In the end, we may think it's selfish, but our hearts are still in the right place. With a strong desire to help other people, no shame there. It's purely a genetic thing to be matched, so don't be down. Being on the registry and being willing to donate is about 99% of the moral footwork so to speak.

Wow not bad. Thanks for sharing!

no problem! my pleasure.

I wish I could be put under for this. I would sign up in a heartbeat.

Needles give me huge anxiety

There is a possibility to be put under for bone marrow extraction if that's what they need. But I would say there's no better way to get over the anxiety. Knowing you're saving a life could make all the difference. Also the people who did the injections( I believe they were nurses) we're amazing. Super supportive and incredibly nice I think they would be more than willing to help talk you through it all and help you out in general. I wouldn't let it stop you from volunteering to save a life. Trust me. It is worth it all.

First, thank you for doing this. I'm on a registry, too because I lost a friend who needed a donor and the donor backed out. What should I be doing now to make sure I'm ready if I'm called to be a donor?

First off, I'm terribly sorry to hear that. That breaks my heart. The best thing you can do is make sure you are healthy as can be. There's a bajillion questions they ask regarding health while you are a preliminary match to see if you could donate. Questions regarding travel outside the US, sexual history, health history, history with drugs, etc. I would say I lead a pretty squeaky clean normal life so I had no problems, but I think a lot of people could run into issues. One of them even asked about having a tattoo within the past 12 months. Now to be fair, I don't know which of these questions would ultimately disqualify you, but I only know that it was easiest not having to say yes to any of them. So in conclusion, like I said, you just gotta stay as healthy as you can. Hope this answers your question and helps.

Thank you so much for your advice and donation.

It is genuinely my pleasure! Anything else I can do to help or encourage you, just holler.

So sorry for the loss of your friend. Are matches very rare? Or is the issue that there are not enough volunteers on the donor list?

Thank you. I guess matches are rare, but I know little about what makes someone a good match. I thought that because of my genetics and my ethnic group's cultural attitude towards donation of one's body would mean I am more in demand (people are hesitant to donate even blood), but so far nothing. If it means that I'm not called to donate then I'd like to think it's because someone isn't sick. I'm here in case someone needs me though.

You have a perfect attitude. Thank you for your willingness to make a change :)

I am not positive, but IIRC, matches are rather rare and this is due in part to the fact that there are not enough people on the registry. The more people, the more likely a match can be found. That is why it is crucial to promote people joining the registry and consider donating.

totally, that's why I thought this was a great AMA

Thanks for the reply.

No problem, stranger. Thanks for stopping by the AMA. I appreciate the attention the issue has received.

How painful was this?

So before the stem cells can be withdrawn, for 4 days prior you receive a shot in each arm of a hormone called filgrastim. I won't lie, it burned pretty bad going in, but only for about 10 seconds. Symptoms over those days include fatigue, bone ache, bone pain, and general soreness. I walked around like a grandpa, but it was never overwhelming. I was given tylenol and ibuprofen for the first few days and by day 4 I was given some strong hydrocodone. The day of the procedure, I received 2 more shots, just like every other day and they hooked me up to the machine. So just a couple of needle pricks really, nothing painkillers can't manage.

Would you recommend taking time off work for something like this? Or is it bearable, just a little exhausting? I'd be worried that I wouldn't be able to take the necessary time off to prepare for the procedure.

Another great question. This definitely depends on your line of work. If you are on your feet or active, then yes you will need time off. I have spent a lot of time sitting and lying down these past few days preparing for the withdrawal. If you work from a desk, maybe you could be just fine, maybe a half day when donation time comes close. From what I hear, the people who donate through the civilian organization actually receive the hormone injections at home and continue life fairly normally and then just head to an apheresis center for donation day. Definitely doesn't take you out of the fight for long. I would say it is bearable, just exhausting like you said.

Wow thats pretty crazy. Good for you for doing a good thing for a stranger.

Honestly, I think it's the same thing anybody else would do for someone if given the opportunity. Anyone can save a life!

Well done for highlighting such a worthy cause and doing something amazing.

Anyone from the UK can check out the Anthony Nolan trust or for those over 30 years old the DKMS. Signing up is as easy as spitting in a tube and posting it back. Then if you are a match, you too could save a life.

OP what advice would you give to people? How do you feel about what you have done? Do you realise the impact you may have had on a whole family today?

Great question. I haven't grasped the gravity of what I did. I am only allowed very discreet details of the patient for up to a year after donation, in order to protect their identity and prevent people from withdrawing donations based on the recipient etc. I don't know much, but I certainly hope this patient gets what they need. There is a small chance they may need more after some time in which case, I would be more than happy to redonate. I feel great about what I've done, but I also firmly believe anyone would have done the same in my situation. I saved a life not by acting extraordinarily, but by being lucky enough to be asked to do something simple. Anyone else could do the same and I hope they will. My advice is to apply and tell everyone you know to apply as well. I've been spamming my social media because the more people are on the registry, the more likely someone is to have a match. There's never "enough" so to speak. Also huge thank you for pointing out where people in the UK could go. It's important to realize it's not a worldwide thing, so most of what I said applies mainly to US residents ya know? Very cool though, thanks again.

Youre awesome and humble. At the very least you've given a family hope. Look after yourself!

Thank you, kind stranger. I am humbled by your compliment.

how long can the donation be kept "fresh"? Is this something you can do pre-emptively?

To the best of my knowledge, donations can't be done pre-emptively and like most transplants are fairly time sensitive. In the past I was asked to donate marrow for another patient but was on deployment. By the time I had made it back stateside, I was told the patient no longer needed it. I have no idea if this means the patient died or if they had found other treatment, but I have heard that these donations are very time sensitive.

Wow, I'm glad someone thought to not tell you (and other potential donors) the details.

I'd be devastated to find out I could have saved a life if only I'd been home.

Yeah, I'm glad that most information was withheld. I can maintain a sliver of hope that perhaps the patient got better and didn't need my bone marrow.

Maybe they found another match as well.

It is possible, I am not sure of the protocol, but if I remember the details of the phone call correctly, the coordinator said that the patient's health took a "different turn". So I have no idea what it mean's, I'm just hoping they didn't need it and they got better perhaps.

Hi! I recently received an email from my local stem cell charity, Anthony Nolan, regarding donating stem cells. I had previously signed up to their donor list and they have now informed me that I am a potential match.

Do you have any advice for someone in my situation?

The best thing you can do is stay in good health as best as possible, don't do anything crazy, get any tattoos, or anything that could change your overall health. Comply with their requests with blood work and sit tight. Only one person can be the best match, so don't be bummed if it's not you. Most important thing is that the patient gets the life saving donation they need. If you are identified as the best match, strongly consider donating and complying with the timeline that works best for them. Work, school, anything else can take a brief step back while you step up to the plate. Almost nobody is going to penalize you for missing time if you're spending that time saving a life.

Do you plan to donate again or even do bone marrow? As a Leukaemia patient, I can’t thank people like you enough. I’m thankfully not at a stage where I need stem or bone marrow but I see people who are desperately in need and it scares me that I could be in that position one day. I know a lot of people who are on the list to donate and haven’t had the call yet.

I'm sorry to hear that you are a victim of Leukemia, but I assure you, like you said, there are plenty of people ready and willing to donate should you need it, myself included. Like I mentioned in another answer, I plan to donate until they don't let me any more. It takes very little effort on my part and is worth all the nausea and discomfort that the shots bring about. I'll donate whatever is needed.

First, I still have my mom because of a hero like you. She's five years in remission after a stem cell transplant. Second, You said you've returned back home to California. Did you have to travel to the location of the patient or just the hospital that would perform the procedure? Did the bone marrow registry handle the travel/lodging for all of the process?

I appreciate the bit about your mother. Being a donor, there is very little we get to hear about the recipient so we don't really know the impact we make so to speak. As far as travel goes, the DoD program allows you to make the donation almost anywhere you like and they will fly you there. That's specifically for stem cells. For actual marrow, I think there is less flexibility. The only stipulation for either of these is that you cannot give the donation at the same hospital that the patient receives it at. Apparently that is some legal issue. Now for the civilian equivalent, bethematch.org , I am not familiar since I have not used them, but I hear they don't fly you out to a place of your choosing, but instead do it at a location close to you. Not sure, like I said, but either way its a sweet deal!

Have you seen the Radiolab podcast episode about a marrow donor?

Did you get to meet the person you donated to?

I have not seen it, but I love radiolab and I'll be sure to check it out! I cannot have any direct contact with the donor for 1 year following the procedure. I believe it is to protect them from donor discrimination like for instance if they were a Nazi and then I decided I didn't want to donate. Makes sense.

I just want to say thanks not only for registering and donating, but doing this AMA, and being a great advocate for the Bone Marrow Registy. I have noted through this AMA that you speak really well, and are appreciative of people even taking the first step, so great job!

I just wanted to say that mostly, but do you have a dog?

Thank you for your kind words! I just want to do all I can to ensure that anyone who could be on the registry considers it. They could be the one that saves a persons life. I think about how if I didn't take the time to register, would this patient have found a match? It's possible, but best not leave these things up to chance if we don't have to right? Anyway I appreciate your compliments and such and yes I do have a dog. Two actually one is my wife's dog and one is my dog, he is a new little puppy and his name is Dan and I love him. Thank's for asking!

Awesome! What kind of dogs are they? :D Puppies are great :D

Bluetick coonhounds. The little guy howls away and keeps us up at night for now. Soon he will be much more stable and just as lovable.

Wow, they are pretty cool sounding and looking dogs, never heard of them before!

Definitely worth looking into. They are absolutely PRECIOUS! I am a bit biased though.

Do you have any plans to meet the patient or their family?

Once the year long ban is lifted I would love to meet the person but I'm not sure if it would be the best move. Is it for my ego? Don't know. Don't want to do anything unwise. But I would like to let them know that I care and I hope they're better. I have had the option to contact them through my coordinator but I haven't because I've been busy with stress from school. I think maybe I'll send them a Christmas card.

If a person sends in a sample to a DNA service like 23andme, could the info from that sample also be used to put that person into the stem cell registry?
Assuming it can, do the DNA service cos. have a checkbox for people to opt in to the stem cell registry?

I believe they are entirely different entities working independently of each other, but I certainly think that a simple opt in for people doing the ancestry type service could make for a greatly expanded registry. If only!

How do I go about finding out if I'm eligible to donate? Is that something I would learn after going through the steps of registering?

Yes. eligibility to donate changes over time depending on many factors, so it doesn't hurt to register.

Kudos for doing such a kind thing! I’ve always wanted to register but have been concerned about recovery time. What do you think your recovery process will be like?

Great question and a reasonable concern. Because I have only done one donation method (Peripheral Blood Stem Cells) and not the more commonly known bone marrow procedure, I can only speak for my specific procedure. It has been about 3 hours since my procedure ended, I feel weak still, but normal. I can resume normal activity within 24 hours and can resume more strenuous physical activity in 7 days according to what I've been told. All in all, I'd say it doesn't prevent normal day to day tasks very much. Hope that answers your questions sufficiently. Also from what I have read/been told by people who work with the foundation, the recovery for surgical bone marrow withdrawal is similar, possibly waiting 2 weeks before strenuous activity like working out is resumed. Nothing crazy and certainly not a matter of months or anything like that.

Thanks for answering!

Of course! It's my pleasure to inform people of how the process can work. :)

How old are you? How would you advertise this to young people to bring this more mainstream?

You’re a hero, be proud! You helped so many lives by being a part of this!

I am 25. I don't identify directly with most of my peers because I'm a full time college student. Most people I surround myself with on a daily basis are 22 or younger. As young as 17. There becomes a large disconnect, especially considering I'm married and a veteran. Totally different feel, but if you ask me, helping to save a life is ALWAYS cool and transcends generational trends so to speak. If telling people it could save a person's life isn't enough, I'm not sure what is, ya know? haha

What's for dinner?

My wife ordered me a half pizza/half calzone. A dish that is good enough to please both Ben Wyatt and Leslie Knope. :D

One circular thing that was pizza on one size and calzone on the other?

Come back OP, we need to know more!

I answered! I'm sorry! I fell asleep on account of all the pain meds and such!

It was more like a pac man shaped thing where they took 1/4 of the pizza and folded it over on another 1/4, so it was made from one full pizza dough. It was delicious, but after the fact, I believe it made me sick. Otherwise I was just sick from the donation. Either way, I didn't get to keep it down :(

Sounds interesting, sorry you were sick though.

The last time I donated blood I had an embarrassing event. I dontated after my last uni exam, so I was probably stressed or hadn't hydrated enough.

I had felt quite faint a few other times, but this time I ended up throwing up my lunch, it was very embarrassing.

The Blood Centre was amazing though, they gave me a new shirt and insisted on sending me home in a taxi, all the way from the city in Sydney, which was over an hour.

Very embarrassing lol.

I've heard some crazy stories from the people working at the center and I gotta say, this isn't the worst. Don't sweat it. At least you went down doing something noble, huh.

Do you get paid for this?

Short answer: No

Longer answer: The DoD program pays to fly you and a companion (that you pick) out to an apheresis center of your choosing, puts you in a hotel during the process, and gives you a food stipend per day for reimbursement later on (provided you submit itemized receipts). I believe the regular civilian program has less perks of that nature, but either way you don't get paid money, but rather you are paid with the satisfaction of knowing you made a positive impact.

Awesome! I’m trying to lose weight so I can hop back on the registry. How did they contact you? What made you decide to sign up? My reason was for a customer that had cancer.

You got this, man! I believe you can make the change to get back on! Well I originally joined back in 2010 because while I was going through combat training for the Marine Corps, they made a presentation talking about how you could be given a free vacation and free time off and all this other stuff. It seemed simple enough. I think I did a cheek swab and maybe a blood draw and forgot about it. Funny enough I have been contacted about once every 2 years as either a potential match or a best match. They always seem to get a hold of me. They EVEN got a hold of me while I was floating on a Navy ship in the middle of the ocean. The coordinators at the foundation are nothing if not persistent. They will move heaven and earth to get in contact with someone who is a potential donor.

That’s awesome to hear that they are persistent and really advocating for the patients. Btw, thank you for your service! I’m working on it. My goal is to get there by June. (:

If it's military service you are talking about, you can do it! Keep working at it. Discipline will get you far!

No, I’m a 55 year old grandma... just need to get healthy so I can chase grandkids. Lol!

That is an even more noble cause! Don't lose hope! :D

I've been identified as a potential match for someone suffering from Hodgkins Lymphoma. I went to have blood withdrawn yesterday so that they could see how close of a match I really am. My question: is the process a fast turn around? How long did your process take? Thanks for sharing!

super cool to hear and congratulations on taking the first step. The turn around time is fairly short I think they estimate between 4-6 weeks but it depends on so many different things, the best thing you can do is stay healthy and relax. Hopefully, if you are a best match, you will be available to consider donating! Best of luck!

How exciting!

I agree!

is it ok if i have diabetes? was just diagnosed two weeks ago.

I am honestly not sure. that is a question you will have to inquire about.

Anyone other plans to donate blood,marrow?

I'll remain on the list and donate until they don't let me any more. I plan on staying in good health as much as possible, but those plans could be foiled by biology, ya know? I think there's an eventual limit on donation, but I won't stop until they make me.

Holy f what a coincidence, or not. I was listening to a podcast on radio- lab about a woman who saved a dying mans life by donating stem cells. This inspired me to sign up for the national bone marrow registry and I got my cheek swap kit in the mail TODAY! I also got my boyfriend to sign up:). I heard after one year of donating , if both parties consent, you can contact your recipient. Is this true?

That's amazingly coincidental and very cool indeed. What you heard about recipient contact is true. After one year, we are able to contact each other if we so choose. I think that's rad. :D

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Funnily, if this worked, I think a lot more people would be willing to donate hahaha

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xD

Last comment was removed, but I don't have a question, just big licks. Way to help out a fellow human!

So this doesn't get removed, erm, what shampoo do you use?

I use the Wal-Mart sized Head & Shoulders stuff because I was getting a lot of dandruff a couple years back. I haven't had it since. Coincidence? No clue, but it's lasted me forever haha. Great question!