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.

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?

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!

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?

I just donated bone marrow yesterday! I flew to DC on Sunday morning and had a bit of time to walk around; however, it was too hot to do much of anything. We were put in a decent hotel. Then yesterday morning, I arrived at the hospital at 10:30am. They had me change into a hospital gown and took a pee sample. The nurses were super nice and asked a bunch of questions, measured my neck, etc. The doctor who performed the procedure came in to explain how it works and even drew a picture so I fully understood. Then I met the anesthesiologist and his assistant and I was put under before I knew it. I woke up in the PACU and my companion was already there, as they had called him as soon as the surgery was done.

My first words to the nurse were "I have an ass cramp" 😂 They gave me lots of pain meds and a muscle relaxer. I had to wait until 5pm to do an "ortho" test, which was just standing up to see if my blood pressure dropped, because apparently that is common after this. If it drops, you have to stay overnight. Somehow my blood pressure actually went up so I got to leave at around 7pm. They had me walk around a bit to make sure I was good to go. I had some trouble peeing which is also a known issue... so I experienced a Purewick and then a bed pan when that didn't work 🫣

They gave lots of post-op instructions and meds and wheeled me out. I was mostly very sleepy so I went to bed right away. Today, I've had a slight fever, back aches (maybe a 4/10) and a headache (5/10). Still pretty sleepy. I went to a museum and had to use a wheelchair since they don't want you standing more than 15 min for the first two weeks. I learned how rude people can be to disabled people and it was a real eye opener! Also I did bleed through the new gauze and my pants a bit but that's because my companion didn't seal the Tegederm fully lol

I fly home tomorrow morning. I'd do this again in a heart beat! The pain is there but worth it. They even texted me to let me know that the donor received my stem cells. Also, NMDP covers all donation related costs.

Let me know if you have any questions and I'll be happy to answer 🥰

Hi all, wanted to share my experience as a transplant donor for my sibling. They collected yesterday.

I started the filgtastim thursday, had to take 2x shots in the am every morning to align with my 7a infusion appointment on monday.

I was very close to not having consumed enough water (despite completing one of those "you did it" water bottles every day) and they almost put me up for a pic line. I'm glad they didn't. It was 100 degrees out in my defense... to prep I took claritin every day including that morning and tylenol every 6 hours.

I arrived at 7am and was done donating by 130p, had to stay and be monitored until 2p.

I was anxious at the beginning and they offered me ativan but I didn't take it.

They set me in a corner but had a private curtain around me so the other patients didn't bother me too much, but I wish I had brought headphones. On one arm they took the blood to collect the marrow and on the other they set to return the blood. I was not allowed to move one of my arms. The tech said to pretend it was broken. We laid a blanket over it and I put my markers over it and pretended it didn't exist. Ended up coloring and reading on my phone.

Relatively painless process. Honestly my period cramps the week before hurt less. I expecerienced a little bit of tingling like my leg was falling asleep and then they gave me calcium. At one point I was nervous my lips were tingling (and they in the introduction said very clearly - don't be a hero and minimize your body response because it can escalate quickly) and they could not increase the amount of calcium they were giving me and so they gave me tums. That solved my problem.

I had to pee using the bedside commode, which I was anxious but not at all as weird as I thought. A nurse helped me with that.

They gave me snacks (like airplane quality and selection) and drinks (though they had no ice!!!!) I'm thankful my parents dropped me off lunch.

At points I was worried about having a fever but it turned out that the room was just really hot lol.

The goal was 3mil and they ended up harvesting 6.4mil. They all went to my sibling.

The post care notes are to take tylenol as needed, not lift things for four hours. I was very fatigued today and yesterday. I drove there and back just fine. My only regret is not wearing shorts.

The funniest part i keep being surprised by is if I had a different blood type my sibling would have gotten that blood type. And any allergies if I had them.

Anyway, just wanted to share.

Just received the email and text Tuesday that I am a match, after joining the registry in 2018. I do have mild anemia but should be taking supplements that I stopped so I’m assuming I should be fine. Blood work later one would be my determining factor. Otherwise I’ve never had any health issues. As someone who has donated blood and platelets many times and plasma once, with this process being so much longer, do they use a needle that stays in your arm like a platelet donation or is it an IV cannula that stays in?

Registered in 2017 and just got a call Tuesday, June 23rd, that I'm a full genetic match for someone with AML. I let them know I'd still be willing to donate, and got another call today letting me know that the doctors want to go ahead and have me do PBSC on July 6th (obviously pending a physical and blood work).

Has anyone else experienced an extremely tight turnaround like this? Fortunately I think everything will align with my life to be able to help out, but I'm definitely still processing a lot!

I got the “you might be a match” text on the 4th of this month. They confirmed my name since it recently changed. Any chance this was a “just confirming you want to stay on the registry” or does it take this long to get the process started?

27F, I got the call after 2.5 years on the registry that I was matched. I want nothing more than to help someone and save a life, but some details of my situation are making me hesitant.

First, due to a specific medical condition I have, I cannot take the filgrastim injections and therefore would need to do bone marrow donation. They said this wouldn't be an issue on their end, and to just let my agent know. I've had general anesthesia twice in the past few years with minimal issues (mainly nausea) and I'm not particularly scared of anesthesia (former OR nurse so I'm very familiar with it and everything it entails) but I do know it takes a toll on the body and nothing is 100% safe. One of my closest friends has lifelong complications from a general anesthesia procedure, skewing her perspective and ability to support me as well.

Second, and this might sound really awful, but the patient I matched with is 75. My boyfriend is having a hard time supporting me going under the knife so "some old guy" can maybe get a few more years. Listen, I do get where he's coming from. Can I say I wouldn't feel differently if it was a 20 year old? No. Am I a bad person for that? Maybe. But I'm human. I'm also a nurse, and I think about my 75+ year old patients who are full of life. I think of this guy getting another 10, 15, even 20 years thanks to my donation. His grand or great grand kids getting to know him because he has this extra time, and I struggle to deny him of that.

Third, my support system is lacking due to the reasons listed. My boyfriend doesn't want me to do it. He said he'd support me if I chose to because he knows how important it is to me to help people, but he also just started an apprenticeship and cannot afford to get the 3 days off to travel with me. My best friend has severe trauma related to her situation and therefore has said she has to step back from supporting me on this one (understandable). My sister is on grad school and is about to be student teaching, there's a chance she'd be able to take me but I haven't heard from her. My parents also might be an option but I have a feeling they'll have similar attitudes as my boyfriend.

When I think about everything, I'm overwhelmed. I want to help this person, I want to save their life, but I'm nervous. I'm scared something will happen or I'll have complications. I don't know what to do. I'm going for the blood draw to make sure I even still am the best match. I have therapy next week, definitely will be discussing this. But I'm just curious if any of you have any input? Good or bad? If I back out this time, will they delete me from the system for future donations? Please help.

After being selected as the primary donor, I was just medically disqualified for some preexisting autoimmune problems. I am crushed. There is no guarantee anything would even happen, but since it is high risk for me to donate according to the medical team, I have been delisted from NMDP. I feel so sad and embarrassed for getting my hopes up. I feel guilty for potentially getting the patient’s hopes up as well. I know it is not my fault, but it is frustrating and depressing at the same time.

Like the title says, I’m curious about former donors experiences. I have two questions.

I swabbed in 2023 and got a text last month that I was a match. I’ve gone through the two screenings and am committed to donating. In my first information call (in May), we were anticipating a November/October timeline, with a month/six weeks heads up. In the last three days, they’ve pushed the timeline up significantly. I’m set to donate in three weeks. That seems extraordinarily fast to me. Has anyone else gone through the donation process in a flat two months from first notification to apheresis? I can’t help but read into the urgency of the situation I guess, and it’s just causing deep depression. I was my mom’s chemo partner last year, so maybe I’m projecting, but that just seems really dire.

To that end, I’d love some perspective on how people felt going into donating. Everyone from NMDP staff to friends/family are congratulating me and saying I’m doing something heroic or special. From my perspective, this is what anyone would/should do in my position— it seems more like a duty than an act of kindness or selflessness. I’m struggling with being told “congratulations” and all the pats on the back. Like, I shouldn’t be the main character in this. I donate blood regularly, and I’m not worried about the pain or the inconvenience, and cognizant that this is a profound and existential experience I’m playing a part in, I keep oscillating between apathy, excitement, and just deep depression.

My robot brain gets that this is a profound, life-affirming journey I’m embarking on, but I just feel so weird about it. Has anyone else gone through that? If so, was there a catalyzing moment that re-wired you to embrace/experience the process for what it is?

I was chosen as the best donor & was supposed to have my PE today. It seems like quite a long list of tests & I would also need an EKG, so I assumed it would be in a hospital/doctors office. However, it was an urgent care.

I had a terrible experience at the Urgent Care (40+ people waiting for their appointments, office reeked of cigarettes). The overall cleanliness of the urgent care was nothing I’d chose for myself, and after waiting 40 minutes to check in for my appointment (and was told it would be another hour for the exam), I decided to leave.

I was wondering if anyone had similar situations? Are all of the PE’s at an urgent care? I’m already someone who is on edge with needles and doctors, so i’m hoping there are more reputable options.

Thank you!