I am a 20yo female who was contacted in December as a match to a child. I joined the Be The Match registry in 2012 by swabbing my cheeks as tissue samples and sending them in the mail. They analyzed my tissue sample. When I was contacted as a match, I went to the local hospital for a blood sample. They then identified me as the best match for the patient who has leukemia.

In February I had a physical done where they performed a chest xray, general health questionnaire, urinalysis, akg, and blood samples. I passed the exam and the date was set to donate. The hospital I donated at is 2.5hours away so Be The Match paid for a hotel for me for two nights. I traveled on Tuesday to the hotel and donated on Wednesday. I left Thursday morning.

Every cost is reimbursed. Food and gas out of pocket costs will be given back to me.

I went to the hospital Weds morning at 7am. I got into my hospital gown and had more blood samples taken and questions asked, and gave another urine sample. At 9am I was taken into pre operation room where I was swarmed by smiling surgeons, nurses, and anesthesiologists. An IV was connected to my wrist and I was given a drug to calm me before I went into the operation room. I was taken into the op room and a mask placed over my mouth and I was under anesthesia. Then I woke up. No pain, no sore throat , no nausea. I recovered from that for about an hour before I went into another room for about five hours before I was released with a prescription of acetaminophen/hydrocodone. The experience was nearly painless. The worst part was the 5 minute drive to the hotel after my release, due to post op nausea. I took a nap and felt fine. Today I am mobile and only slightly sore, perhaps a 1 or 2 on the pain scale, and I don't find the strong prescribed meds necessary.

This has been a very emotional experience for me. Unfortunately I must remain anonymous about my full name and location to protect myself but I will answer all other questions with all honesty. I can say though that I live in the United States.

The experience was extremely positive and I am doing this AMA to promote you all to become a part of the program AFTER understanding every aspect of what you are signing up for.

proofs: first email- http://m.imgur.com/hXNfQG9

my lower back after surgery- http://m.imgur.com/AksuF99

before i replaced the bandages, the tiny holes- http://i.imgur.com/9fFmtst.jpg

providing more momentarily and i will be posting links for information.

There was a recent AMA about this but he had the other procedure, PBSC and I had the surgical procedure.

The time and pain experienced on my part is NOTHING compared to the pain of the patient and her family. There is nothing more amazing than using modern medicine and science to take a part of ourselves, and give it to a stranger, to give them life and give hope to them and their families. These patients with blood cancer are sisters, daughters, mothers, brothers, sons, and husbands.

Links

Be The Match website- http://bethematch.org

donate bone marrow- http://bethematch.org/Support-the-Cause/Donate-bone-marrow/

PBSC donation- http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Donation-process/Donating-PBSC/

donate cord blood- http://bethematch.org/Support-the-Cause/Donate-cord-blood/

myths,facts- http://bethematch.org/Transplant-Basics/How-marrow-donation-works/Myths-and-facts-about-bone-marrow-donation/

Comments: 139 • Responses: 51  • Date: 

DIGGYRULES45 karma

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.

daskrokodil24 karma

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.

Milligan24 karma

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.

cadwellingtonsfinest8 karma

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!

daskrokodil8 karma

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!

EvilTech51501 karma

[deleted]

daskrokodil5 karma

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.

cadwellingtonsfinest1 karma

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.

daskrokodil5 karma

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

funnygreensquares1 karma

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.

daskrokodil1 karma

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

daskrokodil8 karma

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

Jamesss19916 karma

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

daskrokodil2 karma

Great! That is wonderful :)

frozen_barbie_head3 karma

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

daskrokodil4 karma

Thank you I really appreciate your support .

Dwlaing3 karma

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

daskrokodil1 karma

That is beautiful, thank you.

PrincessFishy2 karma

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.

daskrokodil1 karma

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.

mochny2 karma

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!

daskrokodil1 karma

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

jakabab2 karma

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.

daskrokodil2 karma

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 .

jakabab2 karma

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.

daskrokodil1 karma

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.

golotheinfamous2 karma

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

daskrokodil1 karma

Thank you!

babybunny212 karma

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!

daskrokodil1 karma

That's awesome! I'm so glad!

PlateletFactory2 karma

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?

daskrokodil2 karma

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.

FiveEightNine1 karma

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?

daskrokodil1 karma

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.

daskrokodil1 karma

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.

Waitatick1 karma

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

daskrokodil1 karma

I'm glad I could help.

Redtech921 karma

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.

daskrokodil2 karma

Hmm maybe I'm just tough :)

Juvv1 karma

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

daskrokodil2 karma

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.

Monicajmhill20131 karma

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.

daskrokodil1 karma

That's great!

jckob1 karma

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

daskrokodil1 karma

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

z2amiller1 karma

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.

daskrokodil2 karma

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.

z2amiller1 karma

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

daskrokodil1 karma

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.

TheStash5311 karma

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 !

daskrokodil1 karma

What's the answer?

wtfdidijustdoshit1 karma

Hi, did it hurt?

daskrokodil1 karma

Minimally.

RaziyaRC1 karma

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. :)

daskrokodil1 karma

Thank you, I'm glad I could help.

bk15dcx1 karma

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.

daskrokodil5 karma

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.

slumber421 karma

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

daskrokodil1 karma

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.

Yamui1 karma

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

daskrokodil1 karma

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.

Yamui1 karma

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

daskrokodil1 karma

I'm honestly not sure.

bk15dcx1 karma

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!

daskrokodil1 karma

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.

bk15dcx1 karma

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

daskrokodil2 karma

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

funnygreensquares1 karma

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.

daskrokodil2 karma

Did you donate or were you a recipient?

gerryhanes1 karma

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

daskrokodil6 karma

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!

greynol51 karma

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.

daskrokodil2 karma

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

greynol55 karma

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.

daskrokodil2 karma

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.

99running991 karma

Do you think your tiny incisions will scar?

daskrokodil3 karma

Maybe but if they do it's ok.

99running995 karma

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.

daskrokodil3 karma

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

eh-for-effort1 karma

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!

daskrokodil1 karma

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

brimlys1 karma

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.

daskrokodil1 karma

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

kdiggle1 karma

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

daskrokodil1 karma

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.

The_Mule_Cat1 karma

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

daskrokodil1 karma

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.

heart4world1 karma

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!

daskrokodil1 karma

And thank you too!

scotty_311 karma

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. :-)

daskrokodil1 karma

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

JessRN1 karma

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!

daskrokodil1 karma

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

legolegol1 karma

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

daskrokodil1 karma

I'm so glad I had the opportunity.

[deleted]0 karma

[deleted]

daskrokodil1 karma

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

Milligan-2 karma

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

daskrokodil3 karma

My username has nothing to do with that.

confusedgerman231 karma

Are you German?

daskrokodil1 karma

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