I donated bone marrow yesterday, AMA

I am very proud of you. You did a good thing. I signed up for the registry about 18 years ago and have never been contacted, but I would do it in a minute.

Again...from a complete stranger...I am proud of you.

Thank you. I have gotten nothing but support from everyone. I would gladly do it again in a heartbeat. The limit is three donations and for the next year I am "on hold" for this patient in case she needs anything else from me.

I just want to point out that bone marrow donations don't usually involve even this minor surgery - it's only used for certain types of cancers. Most donations are done using apheresis, where blood is taken out in an IV tube, centrifuged to remove the bone marrow stem cells and returned to you in another tube. It's pretty much painless and takes a few hours.

So don't be afraid to sign up.

Yeah, technology is amazing. It has to be said though that apheresis is boring and it's very difficult to piss during the process which can take upwards of 6 hours. The tube sucking all your blood out is kind of gross. Of course these are minor things! But still!

Yes I was honestly relieved to have the surgical procedure because being attached to needles for 6 hours is almost a nightmare! I hate needles! I think this process though has gotten me used to them a bit more because I was poked so many times!

Most needles don't bother me, but the rigid stainless steel large gauge they use for the out-line in apheresis was pretty gross and uncomfortable for me. Did you have to give a bone marrow sample prior to this? Because that is truly the worst thing ever.

No I did not have to give a sample of bone marrow.

I had PBSC donation and you feel the needles add much add you would donating blood or something. You feel like there's something attached to your arm. It doesn't hurt though the tourniquet gets uncomfortable after a bit. I was on nausea meds so I just slept through it all haha. 10/10 would do again.

I pee frequently so I'm pretty glad I didn't have to do the PBSC. Haha.

[deleted]

I don't know anything about this. My decision was never made with money in mind so I never thought to investigate it. I can agree the US hospital prices are ridiculous. I can only imagine the cost of my procedure and everything included.

You are correct. I had the bone marrow taken surgically because the recipient is so young and according to my coordinator, research has shown better long term effects when young recipients receive bone marrow as opposed to the other procedure

After reading this AMA I didn't even hesitate to sign up

Great! That is wonderful :)

As someone whose life was saved my an anonymous bone marrow donor, Thank you

That is beautiful, thank you.

No question per se, but you m'dear are an amazing individual to do this for someone to live hopefully a long fulfilling life, kudos to you

Thank you I really appreciate your support .

I don't have a question, but I just wanted to say Thank You.

My dad was diagnosed with leukemia and they never found a bone marrow match. He had 6 brothers and sisters who ironically all matched each other but not him. He died when he was 28. I signed up for Be The Match a couple of years ago and am currently looking into donating platelets.

So, thank you. You hopefully helped at least one family from experiencing the pain mine has felt. You are awesome.

I'm so sorry. I can only imagine your pain. My purpose in the AMA is to bring light to the registry. I hope many people are inspired to help.

I've been registered for about 15 years. I also donate platelets every few weeks through apheresis. What do you know about how the registry works internationally? Have you ever heard of anyone having to travel internationally to donate?

I am not knowledgable on the international aspect. I have read that a donor was giving to someone in Europe. The donor doesn't travel there. The donor donates at a nearby hospital and the marrow is taken to the recipient. I think different countries use different programs besides Be The Match. Unfortunately I'm not able to help too much on this subject.

I've been considering doing this. I just really want to help if I can but idk if I'm eligible. Is there anywhere you can go for the cheek swabs? Or how would you suggest I go about getting involved?

Also, I used to party pretty hard (I'm 22 n calmed down a bit. still healthy n whatnot) but idk what role that would play in affecting my bone marrow.

Sometimes Be The Match has drives set up. However the best way is to sign up online . They send you a packet. You swab your cheeks on huge qtips and fill out a form. Put it all in prepaid package and send it back.

They do ask if you smoke, drink , and do recreational drugs. I am not sure how this effects it though because my answers were no .

I've been considering it for awhile. Signing up now. I'm 22yr girl like you and gotten to the point where its like.. If I can do good, why don't i? I'm very glad you did this AMA. Maybe if in the future, I get picked, could I possibly come talk to you if I have more questions or fears? I think you're very brave and what you've done is amazing. You've solidified my decision and hopefully others will be inspired to do the same.

Yes! Gladly! Remember it could be years, or never , that you get picked. Chances are 1/540. Low but I got picked so you could too. :)

I would also like to say that you are most likely matched to someone with similar ancestry. There is a strong need for more minorities on the registry.

The best thing you can do is READ. Go to google and search anything you don't understand. In this situation, ignorance is NOT bliss.

Google anesthesia. Google bone marrow transplant. Theres a video on youtube showing bone marrow aspiration. Read read read! The internet is your friend. The more you understand, the better. You will read scary things. You will read emotional things. You will watch inspiring videos. It's all beneficial to you in deciding if this is a good idea for you.

I too went through a similar experience. Thank you for registering and saving a life!

Thank you!

Hello, I dont necessarily have a question, but I wanted to say thank you for doing this AMA. I've always "meant" to sign up as a donor, but I never really got around to it. After reading through some of your responses, I went ahead and signed up today. Seriously, thanks for the motivation!

That's awesome! I'm so glad!

Wow, I'm glad you had such a good overall experience with this! It's really a great thing that you've done :)

I've considered joining the registry before and chickened out, but this convinced me...I just finished signing up!

Hey I'm proud of you! I'm so glad so many people have signed up.

It is very interesting that you said the complete thing was painless. I remember watching the movie called 7 Pounds starring Will Smith, and thinking the whole thing was very painful. I am glad that you can dispel some of the myths that hollywood placed around this procedure.

Hmm maybe I'm just tough :)

this is something so positive so many people could benefit from. this needs to go to the top. I respect you for what you did, its so selfless. i honestly find it too scary. that might sound like a cop out but i honestly do.

also meds im on im pretty sure i cant donate blood or anything

Learning about the procedure is definitely scary. But honestly thinking about it is scarier than actually doing it. My time at the hospital was a majority of laying around and waiting. I was in surgery for only an hour, and I was at the hospital from 7am-3pm ish.

OP, as a comrade in the Be the Match registry, I salute you! I'm hopeful I will become a match. I really appreciate your donation description, it has helped me lower any fears if I'm called in.

That's great!

How bad does it hurt? I remember back when I had tick-borne meningoencephalitis, they had to test my bone marrow and they took it out for testing. The next day it hurt me like hell I couldn't even straighten up. It was a sharp pain in my back

Personally I have minimal pain. Walking quickly would hurt. Just sitting around though isn't painful at all.

No question, but thank you for all the info. I registered a few months ago so it's nice to know what to expect if I ever get the call. :)

Thank you, I'm glad I could help.

I'm a Bone Marrow Transplant nurse and from my entire unit, patients and nurses, as well as myself, THANK YOU!! Your donation means so much! I'm glad that you've had very few side effects. I hope you continue to encourage people to sign up with Be The Match. You're AWESOME!

Thanks! I'm so thankful for the support I've gotten. :)

No question just want to sincerely thank you for doing this!

I'm so glad I had the opportunity.

Thanks for giving life to your recipient!

I too am registered as a marrow donor on Be the Match, as well as an organ donor on my driver's license. The more people who register, the more lives will benefit!

And thank you too!

For a second I thought you might have actually been my doner, the collection dates coincide perfectly. As far as I know though my doner was originally contacted in late January.

At any rate that's an awesome thing for you to do, and you seem like a great person. I admire anyone that donates, especially given the fact that I am on the other side.

I have no question just want to say thank you for whoever you are a doner for. :-)

Well I doubt you're a one year old so I don't think I'm your donor! Haha!

Was there any initial fear prior to registering/getting initial swab? How did you overcome this if you were afraid? Were you allowed to back out at all, or were you held to a contract or agreement of sorts? Asking because I would consider doing this, but darn it, it sounds really scary.

Yes! I donated blood for awhile, and I had A LOT of anxiety about that. I get lightheaded and sweaty around needles. But I also used this experience to prove to myself that I can face my fears to benefit someone else. Throughout the process, I always told the nurses I'm bad with needles, and they understand. They will do everything to comfort.

You are allowed to back out but I would like to emphasize the sad truth behind this. 12 days before my procedure, the baby started strong dosages of chemotherapy and without my marrow would likely die. This weighs heavily on me. However if you back out early on the consequences arent necessarily as horrible. Keep in mind though that you could be the only match. Yes it's not fun to think about. I cried a lot throughout these past few months. I wonder how her parents are doing? I wonder if she will be ok? But I stepped up and I tried and I am so glad I did. Some people could feel easily overwhelmed by this all, which is very understandable. It's certainly not for everyone.

Thank you for your answer. If I had some reddit gold, I'd give you some. I'm bad with needles in the sense that they can never get my vein (it was explained to me that I have "smart veins" that move when needles try to pierce). The Red Cross that used to come to my work told me it was ok to stop trying to donate since they could barely ever get any blood from me. I suppose a surgery for marrow is much different than donating blood though. I will read up some more on this. Thank you for being a life saver!

I was told by several people that I have tiny veins, which isn't fun especially with my issues. Fortunately I learned that the needles used for donating blood are generally larger than needles used for blood samples. The small needles didn't effect me nearly as much. It eased my anxiety a lot.

I just went and registered. They are mailing me some cotton swabs within 2 weeks. :)

Good for you! Make sure you understand what you 're getting yourself into!

I had a similarly emotional attachment to my matches. I dont even know them. But I feel so curious about them and I only want good things for them.

Did you donate or were you a recipient?

Is it possible to ask Be The Match if you can send the parents a letter?

Yes! I can. I cant reveal any info about myself but I can definitely write them a letter. Which is something I'd like to do here soon.

How come you can\t reveal any info about yourself? :0 And are you allowed to donate bonemarrow at 16? I'm curious about that..

Thanks

I'm supposed to keep it to myself so that the donors family doesnt make any connections. I have to be anonymous for a year after the transplant.

I believe in the US you can donate from ages 18-44.

Hm but what is the reason behind having to be anonymous for a year? is it incase the transplant doesn't work out that well?

And Ah, I'm in the UK :x

I'm honestly not sure.

I'm very moved by this. I'm a type 1 diabetic. Does anyone know if I can donate?

I'm not sure. But I'm sure that diabetes is effected by many medications and procedures so it is definitely something to research before signing up.

Which bone did they take the marrow from? And where are you feeling sore?

Doctors use a needle to withdraw the marrow from the back of the pelvic bone. At the moment I am only sore sitting down, but it is a very minimal soreness. To some it is comparable to falling on the ice. But for me personally, I think hitting the ice hurts more!

I think that is so inspiring. People like you make my hear swell and burst for a very personal reason. I am sitting here tearing up. Thank you for being so brave.

Thank you. Comments like yours reach me very personally as well.

My grandfather passed away last year from complications due to Multiple Myeloma. He had lived for 20 years with that cancer all while surviving a heart attack, pneumonia and diabetes.

I was his first grandchilid (born in 1993) and he was diagnosed in late 1992. He was told that if he didn't get a bone marrow transplant, he wouldn't live long enough to see me be born. Luckily, they found a donor and after I was born (he was still in quarantine at that time) my grandmother took me and held me up to the glass of his room. He got to live to see his first grandbaby. Then he got to live to see six more.

I got to have 20 years with my grandfather who I was extremely close with and its all thanks to people like you.

That is very touching. I hope others read this and see the power they have to help. Some people in this world feel worthless and it's our ability to give to others and change lives that can renew our purpose. I hope my donation brings long life to the recipient. It isn't always a happy ending but it is all I can hope for. With more people joining the registry each day we are that much closer to one less family member lost. It is so important.

Do you think your tiny incisions will scar?

Maybe but if they do it's ok.

Cool. Just an FYI, I just signed up because of this AMA. It's always been something I've wanted to do, and randomly finding your AMA pushed me to finally sign up. Thank you for your AMA and your donation.

Thank you. I hope someday you can help a stranger. Believe me it is a life changing experience.

Do you know and can you go into detail about what they are looking for in the physical? I signed up for the registry about a year ago, but I'm a generally out of shape / fatass white collar worker. I dread getting the call that I am a match only to be told that I don't fit the criteria to donate.

Well I will tell you what I know. Height and weight are important for the procedures and for meds to get proper dosages. They want you healthy so you can properly recover. Being overweight doesn't necessarily make you less likely to recover as well. They want to make sure you are functioning well overall. So the AKG is to make sure your heart's beating well. The chest xray to see, well I'm not entirely sure about that.. I guess to check for abnormalities. They don 't want you to have any diseases you could pass to the recipient. Questions like, do you have AIDS, diabetes, west nile virus, asthma, sickle cell anemia ? Have you traveled to this or this place during these years? Have you received blood, organs, etc? Stuff like that. They aren't there to see if you're physically fit or overweight.

Thanks for the reply! And thanks for the donation! Will you get more information and updates about the recipient of your marrow?

Yes I will. Be it good or bad news, I will learn about it. I am not sure when though. For the first year after the transplant, we can communicate anonymously. After that, we sign paperwork and we can learn names and locations. I hope the recipient recovers. I hope someday I can meet her.

Do you happen to know if having asthma will automatically get you rejected as a donor? Mine is mostly exercise induced and it acts up in minor ways during allergy season.

Edit: Nevermind I did the research myself !

What's the answer?

This is amazing. I always heard it was super painful but after reading this, I'm going to send in my kit I've had sitting around for awhile. Thanks for sharing!

The experience will be different for everybody. But for me it was not a big deal.

When you went for the procedure did you have to have someone go with you? To be there while you are in the procedure and to take you to the hotel and stay with you after you are done? I am signed up for donation, but I am always worried about being called and having to ask a friend to take a few days off of work to take me.

You dont have to but you are allowed to take a companion. This person's meals are paid for as well.

How much marrow did they take out of your bone? was it like when they did it to will smith in seven pounds? sad movie. good on ya

I haven't heard of that movie. They took about 300-350ml, which is less than the amount of blood you give at a blood donation.

You are so awesome for doing this! I signed up with the registry back in college, and ended up holding a few donor drives with my Asian interest sorority to increase awareness among the Asian American communities. Minorities are seriously underrepresented in the registry, unfortunately.

For my actual questions - how long was the time between finding out you were a match to actually doing the procedure? Is it sort of ASAP? Also, do you get any information about your match, or is that strictly anonymous on both ends?

I found out in December I was a match and I donated in March, so three months. I was personally very motivated to get things done quickly, like the physical and blood draws, because my work is flexible and I understand the patient is on a timeline. But everybody will have different times. Sometimes the patients doctor decides to wait to receive the marrow, so you could find out you're a match, then donate a year later, or however long.

I found out in December I was a match and I donated in March, so three months. I was personally very motivated to get things done quickly, like the physical and blood draws, because my work is flexible and I understand the patient is on a timeline. But everybody will have different times. Sometimes the patients doctor decides to wait to receive the marrow, so you could find out you're a match, then donate a year later, or however long.

I do not know my matches name or location but I know her age and gender. After one year we can sign consent forms.

Hi, did it hurt?

Minimally.

I actually signed up through a local drive today! Thanks for posting this. It answered several questions for me.

I'm glad I could help.

[deleted]

Thank you. This opportunity has definitely helped define purpose in life.

I just noticed your username. Didn't they have any objections to your using krokodil?

My username has nothing to do with that.

Are you German?

Nope if you think I'm writing weird, it 's because I'm typing on an iPod and my thumb is cramping.