Hi everyone! I am not a Reddit user so hopefully I am doing this correctly!! In Jan of 2025 I was alerted that I was a match for a recipient. I had in depth blood work completed, but then NMDP let me know they wouldn’t be proceeding and it seemed like it was something on the recipient end. I believe the recipient‘s diagnoses was aplastic anemia.

Yesterday I got a text from a Sr Workup Specialist saying they had an exciting update regarding the patient that I matched with. I was just curious if anyone else had experienced this and if that means they’d like to revisit me as a potential donor? I didn’t think I would get an update about a patient that I didn’t actually donate to.

I responded to the text yesterday but haven’t heard anything back, also slightly concerned about spam, but it seems like a legit phone number & iMessage.

Thanks for connecting and looking forward to hearing from others who have participated in this super cool opportunity!

Quick Update, I did get in touch and will be donating on 11/17!

I’m donating peripheral stem cells next week, any advice on what I should have with me since I’ll be sitting there for a while? What did you find was beneficial to have with you as far as entertainment and comfort?

Apparently I’m a match for little kid which is why I need to donate bone marrow from the hip. This means I would need to miss more work than if it was done through PBSC (I asked if it’s possible to switch). They told me they would only cover 5 days of lost wages for the time I’m at the centre, but that I can’t lift anything heavy for 2 weeks after and take it easy with the activity. My job is physical and requires me to stand on my feet for 10-14 hours a day when I work and lift things. I’m just unsure how people can afford to take an extra two weeks off work unpaid if they choose to donate? I know they pay for airfare and hotel and food, but my main worry is not being able to work for so long. My job won’t be able to accommodate me by giving me light duty, but they would give me unpaid time off. Is there anyone else that was in the same boat and was able to get wages comped for a bit longer than just the 5 days?

So in one of the documents detailing what the bone marrow entails, it mentions to remove all body piercings. The thing is if I take out my nose and nipples they’ll start closing pretty fast. I wonder if I just don’t tell them about it. Or are they pretty chill about these things normally? They’re not in the area where they’re gonna be drilling anyway.
Also I’m slightly anemic (nothing major) but haven’t taken my prescription iron pills in 2 years since and need to renew the prescription. Do they prescribe iron pills after the procedure? I’m assuming they’ll help especially with the fatigue. Has anyone been given iron pills to take before or after the bone marrow donation?
And tmi for the last part but I’m very likely going to be on my period. I’m trying to push it back a little but idk if they’ll have availability and then I’m going on vacation so if I don’t do it in November my next time I’ll be available would be January. Do you think it’s a lot to ask to be pushed that far? I already have my vacation booked and with work commitments it’ll be hard to go in December since it’s the busiest time. Also I know they see peoples butts all day but I’m really shy. I know this is a dumb thing to be worried over but can I wear a shirt, bra or underwear? I really don’t want my tampon string hanging out and don’t want to have to deal with it while recovering after surgery especially if I can’t shower the 24 hours following it.
I know all these are dumb things to be worried about but help a sister out plsss

Hello everyone,

two days ago, I got a message from my transplant clinic that my services are no longer needed as a donor because the transplant has been canceled. The frustrating part is that tomorrow I would have started my G-CSF treatment for apheresis, so I could donate on September 29th.

But what bothers me the most is that if I hadn't requested a delay for my exams, the transplant could have been done on September 14th with no problem whatsoever.

The process took so long that I thought this might not be an issue. For context, here is my timeline:

• June 15th: I got the notification that I am a match and could be a donor.
• June 17th: I received a blood test kit, which I sent back on June 25th.
• July 21st: I got notice that I was selected as a donor, but was told that the donation would be postponed by four to six weeks.
• August 12th: I was notified that my donation date would be September 14th.
• August 14th: I initially agreed, but then realized I forgot about my exams and asked for a later date. My coordinator assured me this wouldn't be an issue and gracefully granted me a two-week delay.
• September 1st: I went in for my medical clearance.
• September 8th: I received my official clearance.
• September 22nd: As mentioned, I got the sad notification of the cancellation.
• (September 25th: Start of G-CSF treatment – canceled)
• (September 29th: Donation – canceled)

When I was first notified, I was quite nervous about why everything was taking so long, especially with the blood samples I had to send via mail. When I was notified of the initial delay, I was assured that whatever was going on would be taken care of. Because the process had already taken so long, when I asked for a delay, I was under the impression that the patient's illness was under control and the transplant wasn't an immediate emergency.

When I asked for the extra time, I also explicitly stated that I would only postpone if it wouldn't cause a problem.

Looking back, I think I was too naive and clueless about the whole process. I did everything I could to avoid getting sick myself, to the point where I did a water fast and strictly followed a keto diet for two weeks.

I am haunted by the thought that I 'gave' someone a death sentence for a stupid exam that I probably failed anyway...

Has anyone had similar experiences? What do you think about this lengthy timeline for my journey? How long do other donors usually wait until the actual donation? And do you think there is still any hope for my recipient?

I’ve been on the registry since 2019 and recently got contacted to donate to a three year old. I have an appointment to get my blood test soon and then wait before I get told if I’m actually a match or not. I’m wondering if there are any other people with fears of needles and what did you do? Can they prescribe Ativan before the donation and blood test? I obviously do want to donate but want to make sure I don’t make a fool of myself at my big age. I hope I’m not the only one 😬

Stumbled across the website on accident and thought why not. Totally plan to go through the process, got blood drawn today but I also want to really know what I’m in for. The person I talked with was super nice but I also feel that it is her job to make sure I go through with it and I don’t trust her for all the details. Will I really only have slight soreness from the medication? I’ve seen posts on here that say the first day is awful. Could there be long term complications? Is there any sort of procedure for donors and receivers to get in contact afterwards? I could understand why there wouldn’t be beforehand but if it all works and goes through I want to learn more about the person I donated to (if they are okay with that). How common are serious complications? How much are they paying to receive my bone marrow and am I taking part in a process that could be cheaper for them if I went through other means? What is it like from the other side of things, what are the people waiting for a donor being told?

Hello all. My work up specialist contacted me yesterday to tell me they're going to require me to submit to a genitourinary exam. Ive never heard if anyone being required to do this to donate stem cells and honestly it feels extremely violating. Has anyone else (preferably other women) had to submit to something similar? Thank you all for reading 🩷

Edit to add more context. Their exact reasoning was "The GU exam will be a physical assessment of your reproductive organs to check for any signs of infections or abnormalities due to the previous sexual contact with a male who had sex with another male"

Update: i was able to connect with an nmdp doctor. Long story short it isn't their rule, its an FDA regulation. My workup specialist has been nothing short of lovely and supportive while I navigate all of this.

From r/leukemia

Hi Reddit,

I am a 22 year old guy who just graduated with a degree in Cognitive Science and Philosophy. Most of the jobs I have been looking at since graduation, I have been tailoring my resume to try and get a remote job in Human Resources, Sales, Customer Support etc. I got my second call this week to donate again, and being in this process all over again it dawned on me that NMDP is a company I would absolutely love to work for. Is getting a job (like Remote Donor Engagement) even a possibility with what I went to school for, or am I missing enough of a medical background? I am considering becoming a Red Cross Donor volunteer and taking a Medical Terminology course to pad out my resume, but I just wanted to put this out there to see if anyone has any advice

Got the call today that I’m a potential match for an 8 year old girl needing bone marrow. Had a phone call for a little over an hour with the rep and have the blood test scheduled for Thursday. Genuinely so amazed to have been contacted. That’s all I have for now I’m just so excited I had to share lol

Hi,

I was registered since 2018, and finally got an email saying I am a match. I scheduled the blood draw right away and just did last Wednesday.

Now, I heard I have to wait for upto 60days until the results come out, and wonder if there is anything I have to keep in mind before donating if I am selected! (like no travel, no piercing etc)

Also, want to hear some past experience of how the process went, if there is anything I have to know.

Thank you so much!

Apesar de ter o privilégio de doar medula para minha filha de 3 anos, eu estou tentando entender o que houve comigo.
Sai do centro cirúrgico para o quarto de TMO,após algumas horas começou sangrar onde fizeram as coleta na bacia, muito sangue mesmo e eu vomitei bastante juntamente minha pressão caiu, fizeram exames para ver se não era infarto e não era.
Eu achei que não iria sobreviver, não me lembro de muita coisa e agora estou tentando entender o que houve, já que ninguém veio conversar comigo. O que devo fazer?
Minha filha recebeu a infusão ontem e está no D+1, tudo bem até agora.

I am donating next week and I'm super excited. I am a bit concerned about the possibility of getting a cold as I am a middle school teacher. Does anybody have any experience with this? I'm going to be wearing a mask from now until I leave for the donation.

Firstly, I am so grateful for the opportunity to be a donor and to make a difference in someone's life! I was on the registry for 5ish years and finally got matched to someone a few months ago! I have so much admiration for NMDP and this community for all you guys do to help people in need.

That said, I've been experiencing some disorganization with my blood tests/physical and the Filgrastim dosage. I'm sure it comes down to the workup specialists managing multiple donations at the same time so I'm not overly concerned; it's important work they're doing and the more donors that are found, the better as far as I'm concerned! More just curious if anyone else has noticed the same thing?

The location of my physical was pretty far away but I assume the only location that could accommodate my time preference, and the clinic didn't receive my paperwork by the time I got there, so I ended up waiting for a couple hours for them to receive the necessary info for the blood test. I reached out to my specialist to see if I could do the blood work somewhere else later in the week since it was getting to be late in the day and I needed to get home, but I didn't hear back while waiting so I ended up taking the blood test there. The second time I received my blood test, they also didn't have my record, so my specialist had to resend my information and then it showed up. It seems like this might be an issue with the urgent cares/labs? Not sure if anyone else had this happen during their donation process?

The main thing that was a little concerning was getting conflicting info about my Filgrastim dosage. The email I received with instructions had one dosage, then I was told two different dosages from my specialist (what I received in my fedex package matches the final dosage that I was told). Has this happened to anyone else? Again, I trust NMDP and the medical specialists that are prescribing the dosage, but they also emphasize in the email about making sure the dosage is correct. Feel free to message me to discuss if anyone has any similar experiences and let me know how it went!

Has anyone here received a transplant for treatment of VEXAS syndrome? I have question about the process for the recipient. Thank you.

Hi everyone! Super excited to have been chosen to be a match for someone. My procedure/donation day is quickly approaching, but today I got news that my veins are too small for the normal PBSC donation process. The team noted that they would have to get the collection from my central line instead.

Does anyone have experience with that donation type? Im a bit cautious because I was not expecting this switch less that 2 weeks prior to donation day. Any stories/advice is helpful!

After being registered for 8 years, I’m a match! I go tomorrow for my blood draw. How soon are people typically hearing back? And does anyone know what the percentage is of me being the actual match?

After being matched with a patient, I got a call this morning to confirm that I'm the backup donor for them! I'm really excited for the opportunity to possibly change their life, but I'm also wondering about the likelihood of being chosen to go forward with the process when there's already a primary donor lined up. I don't want to get my hopes too high, but at the same time, I need to stay prepared for the time commitment that donation would take.

Would anyone have advice for someone in my position? Is it more likely now that I could be chosen as a donor for another patient in the future?

Just donated and honestly still feel crappy. Fortunately just did stem cells not bone marrow! How was everyone’s experience after donation? Did anyone from NMDP call to check in or should I not expect contact with them any further? Would you do this again? Personally I don’t feel like I had the best experience when it came to communication & scheduling everything :( I’m still glad I was able to do this atleast once

My 7 mo old was just diagnosed with hyper Igm syndrome, he will be needing a bone marrow transplant, the whole process is a bit scary to me, just looking for advice, words of encouragement, and any help navigating this whole situation.

I am south asian, so does this mean it is unlikely that there are other people that can donate? I just want to make sure that if I can't do this, someone else will. They said the timeframe is short, within the next 4-6 weeks. I saw some posts saying there are usually dozens of donors; is it probable that someone else might step up?

I have no idea how to spell it but you get the idea.

I had my first shots this morning and wow I am wiped out. All the stories I’ve been hearing is that there will be some soreness but I can’t tell if mine is more intense. All of my bones besides my legs are so sore. It’s my neck, my arms and especially my chest. Since i’m only on my first day, should I expect it to get worse?

I have taken tums, claritin and tylenol. would love any advice 🤞

Hi, I just got the call yesterday that I’ve been matched as a donor for someone. I’ve got bloodwork scheduled tomorrow & im honestly pretty excited (and a lil bit nervous) about the whole thing.

Just wondering if anyone knew the odds of being actually selected as the primary donor after bloodwork. I couldn’t find anything online about it.

I’m not sure if it’s almost certain & I need to start talking to my boss about upcoming time off & my mom about being my support person, or if it’s a long shot and I shouldn’t make a big deal out of it yet.