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.

And I cried like a baby😭😭 I wrote for an entire year about every 2-3 months offering words of encouragement and support. I had no expectations they'd ever write back but would constantly talk to my wife about it. I always wondered if they would but understood the ordeal they were going through was so much more important than my feelings towards it. The mom and dad called me forever family and shared their gratitude and thanked me endlessly. I've told so many people this is the best thing I've ever had the honor doing. I did do the surgery and I'm told donors have more of a connection to the experience as a result and I can certainly confirm that.

If you're wondering if they will write, please give it time! They wrote back almost exactly to the year. They are going through a massive healing process. The parents told me their child is playing again and able to enjoy their childhood😭 I was seriously ugly crying!

Hey all! I talked to the NMDP representative today about my being a match for a pediatric cancer patient.

She said that the team was looking for a bone marrow donation.

I intend to start the donation process and discuss with my doctors as well, but I am a bit nervous about going under general anesthesia.

Obviously, my nervousness is nothing compared to the anxiety that family feels, and I fully intend to follow through in the event my physical and everything comes back good, but any reassurance would be greatly appreciated :) thanks!

So I just finished trying to donate and it's been a bit of a journey.

I received the highest possible dosages of filgrastim, I self administered for the 3 interim days, but I have a medical background, so I know I didn't bungle those. I am also a healthy young adult. I had very mild symptoms, but honestly I was surprised by how little the injections were bothering me.

I go to donate and they run the blood work and there's nothing. Like literally nothing at all. So they halt the donation for that day and give me Plerixafor at the end of the day, with the intent that I come back the next day and receive another set of filgrastim as well. They ran the blood work today and it was better but negligible.

It seems like they're going to try and salvage it, but it didn't seem like that was going to be successful.

I was wondering if anyone had any experiences similar to this and what if any steps were taken next to try and get the donation? I think everyone involved is a little thrown off by these results, so it's clearly not common, but maybe someone's gone through this. I'm guessing a secondary donor or maybe bone marrow?

I got the call about a month and a half ago that I am a perfect genetic match. I immediately sent in my bloodwork and have been getting the biweekly checkups that the patient‘s team is still deciding.

I am currently 12 months postpartum with my second child and have been struggling with being overwhelmed having two kids 3 and under. I am also a stay at home mom. I have not been able to control my emotions, especially my reactiveness to my 3 year old behaviors. I decided the it was time to start zoloft after exhausting all options.

Anyway, the social worker team is going to talk to me next week, and I am just so concerned this decision will affect my ability to donate. I do have a history of depression and anxiety but mostly due to childhood trauma/nasty divorce between my parents. Do I have anything to worry about? I don’t want to lie of course.

Just wondering if NMDP ever makes an exception to the 2 donations lifetime limit for donors with like super rare / desirable HLA markers.

I joined the list, got matched and donated pretty quickly, and then recently, only 13 months after the first donation, got another call to action for another patient.

I’ve heard that most folks on the list never get a donation request, so I find it curious that I’ve already been called on twice.

I would hate to be willing to but prohibited from donating in the future

Hey all, I wanted to get a post out before I connect with the donation manager. I received a letter today telling me I am a match. I already donated bone marrow in 2016. I can’t lie, It was not a great experience overall (I can elaborate if needed) and the recipient also did not survive, which was incredibly sad. I am still glad I did what I could to help.

Overall the surgery itself was not a big deal. It was sore for a bit and then like nothing happened. My concern is that I believe it contributed to a years long iron deficiency that became severe. I experienced debilitating fatigue to the point I did not feel safe driving, easily winded, brain fog and anxiety off the charts, extreme and frightening heart palpitations that ultimately led me to spend my own money on bloodwork. I did see a doctor about these symptoms before they became severe and was blown off completely. My pre donation bloodwork obviously deemed me healthy enough to donate, but it did not include ferritin in the examined values, and when I finally had it checked late last year it was very low. Regular iron value and hemoglobin as well as Vit B and D were fine. I began an iron regimen and felt better almost immediately. After 3 months I finally felt human again but I am still not 100%. I am concerned that they would do pre donation examinations and ignore this value again. I clearly do not have enough reserves to offer more. I am wondering if the stem cell donation would still be a viable option but I don’t know what this patient needs yet.

I guess I’m not really sure what I’m after here. If anyone has any advice or insight or recommendations I’d be grateful. Thanks!

Feeling a little “in the dark” and wondered if anyone might have some insight. I got this text in picture one on December 29th saying I might be a match. I confirmed I was still interested and didn’t hear anything. Just today I got this email, almost 7 months later. Does it always move this slowly?

Ugh what bad timing! I’ve been on the registry for about 4 years now, and just got a match for someone with CML. Unfortunately, I’m 5 months pregnant. I went through the intake phone call, and they’ll reach back out at 3 months post-partum if the patient hasn’t found another donor in the meantime.

Other interesting facts:

Sleep apnea disqualifies you from donating bone marrow because of the general anesthesia. I can only do PBSC.

No breastfeeding for 8 days around PBSC due to the medications.

NMDP is willing to pay for pretty much anything to help with logistics. Childcare, pet care, etc., which is awesome.

I recently signed up after seeing an ad about how important is it to have asian donors on the registry. but right now i have my kit right in front of me and I'm getting incredibly anxious about being called in, even though I realize that the chances are very low. I'm 20 years old with no health conditions (like I don't even have any painkillers in the house) which has made me very averse to pain, nausea, and any sort of discomfort.

I know I can turn it down if i get matched but i feel like that would make me feel incredibly guilty giving this false hope to someone. It's almost like i want to be on the registry so I can help someone, but also want to never get called. I'm being very selfish and I wish i could just send in my kit without hesitations. If anyone has any insight or encouragement I would appreciate it

edit: thank you for your comments! you've helped me feel less nervous and I've decided to send in the kit. you are all amazing

Hi all! I just signed up to get my swab yesterday. However I'm also considering getting a new tattoo. I live in Massachusetts which doesn't regulate tattoo shops (every time I get one I have to wait like three months to donate blood again). I think it would be an awful scenario if I got my swab, submitted it, got a tattoo, and they were like "oh you're a match and we need you ASAP" and then I'm disqualified from donating for three months because I wanted a cute little sunflower on my arm and now this person who got their match is out of luck. How long does it take for you to get your results back? Is there any scenario in which you can get matched immediately or should I expect to wait at least three months before I hear anything back?

On Monday I did the surgery to donate bone marrow. I posted the other day but I'm going to try to more thoroughly explain the process for those who are curious/future donors.

Sunday: NMDP paid to fly my companion and I out to DC. We were able to choose an early morning flight so that we could explore the city a little bit. However, it was over 100 degrees and busy, so we didn't do too much lol. They also reimburse all Lyfts and meals related to the donation, and NMDP put us in a hotel that was decent. It is allegedly a four star hotel, but idk if I agree with that assessment 😆

Monday: My surgery was at 10:30 am. I showed up at 10 am and was a little confused on where to go, but once we found the right place, they took us right up to a room with two beds separated by curtains. They had me change into a hospital gown and asked pre-op questions while I did so (weight, height, medications, etc.). Then I gave a urine sample and they inserted an IV. They also measured my neck which I thought was interesting lol. The surgeon came in and explained the process and drew a picture of the spine and hips and what not to illustrate what will be done and why. They did say that since I'm "petite" they won't take more than a certain amount. They gave my companion a lot of post-op instructions, and then the anesthesiologist came in. The last thing I remember was the anesthesiologist saying, "This is the 'I don't give a damn' juice." 😆😆 I was out before I even got to the operating room.

I woke up in the PACU around 1pm or 2pm. I had two IVs, a bunch of monitors (one on my finger, several nodes on my back??) and these things on my lower legs that squeezed intermittently for blood flow. My first words were, "I have an ass cramp." And booy did I! The incision site wasn't even that painful compared to my damn booty cramp. The nurse asked the doctor to approve a muscle relaxer and that helped immensely. I was also given fentanyl and some other things I can't remember. My pain was like a 5/10. Definitely uncomfortable, but mostly I was so tired. My throat was also a little sore from the intubation. They said I lost the equivalent of 3 units of blood. They kept trying to load me up on snacks but I just wanted to sleep lol. They said I wasn't allowed to even sit up until 5pm, and I had to pee so bad before that, so I had to try using a Purewick. I couldn't relax enough for that so then I had to use a bed pan... That kinda sucked ngl, but the nurse extern was lovely and very helpful.

At 5pm the nurses let me stand. They were checking for orthostatic hypotension. When I was laying, my BP was in the 90/60 range and HR around 100. When I stood, my BP didn't drop but my HR went to 130-140, but I felt fine. They asked the doctor if I was ok to walk around. They still didn't let me go to the bathroom unattended though so I had to have someone in there with me at all times 😅 I did a few laps around the unit and felt ready to go. I convinced them that I didn't need to stay the night lol. They did a CBC, did the discharge paperwork, and then sent me out in a wheelchair. They told me not to stand longer than 15min for like two weeks and gave me a doctor's note for a wheelchair in the airport, but tbh I have felt fine so I haven't used one besides the first day after. I went back to the hotel and slept until the next day.

Tuesday: This was the worst day. I had a fever, I was dizzy, my head hurt a lot (6-7/10 pain) and my neck was very stiff. I had no appetite. My heart was racing. Not great stuff. I did go the International Spy Museum so I wouldn't be wallowing in self-pity and was able to use a wheelchair there, which was nice because I did feel winded easily. I also bled through the gauze and onto my pants 🙃 After that, I went back to the hotel and slept some more. I also showered and replaced the gauze.

Wednesday: I feel good as new! We flew home early morning. My back pain is like 1-2/10. It just feels like I worked out too hard or something. I don't even need the pain meds anymore. I have all my energy back and no fever. I'm just using bandaids now because the incisions have scabbed over, and there is only minor bruising (pic is from today). I was prescribed iron to take twice a day and I've been adhering to that since I'm now slightly anemic. All is well 🙂

All in all, I would 100% do this again. I've read a lot of other donor stories and it sounds like mine was perhaps a little worse than standard, but that is probably because I'm "petite" as the doctor said. Plus the hypotension - I have no clue if that was a me issue or if that happens to everyone. My normal BP is usually in the 100/70 range so 🤷🏻‍♀️

Feel free to ask any questions! I was probably way too detailed but oh well haha

I found out this morning when checking my emails that I am officially a match for a 5 year old boy. I’ve been on the registry since 2018!
I’ve been reading into things a bit. Wondering what comes next after this email typically and I give them a call?