r/BeTheMatch Sep 11 '24

Announcement r/nmdp is BeTheMatch’s new home!

2 Upvotes

Wait don’t scroll past this! Jump to r/nmdp and hit Join! We moved to r/nmdp in tandem with the rebranding to NMDP (formerly known as Be The Match and the National Marrow Donor Program).

New packaging, same great recipe for love!

Then you can leave this sub and we’ll wind it down for good and archive this little nugget of the internet.


r/BeTheMatch Jun 16 '24

Story 📖 Detailing My Recent Bone Marrow Donation (Long)

Thumbnail self.nmdp
5 Upvotes

r/BeTheMatch Jun 03 '24

Question got the call today

Thumbnail self.nmdp
5 Upvotes

r/BeTheMatch May 27 '24

Blood stem cell transplant question

Thumbnail self.nmdp
3 Upvotes

r/BeTheMatch May 22 '24

Got the…. text? Filled out the form confirming interest but got no call or email, just this text. What should I expect to follow?

Post image
12 Upvotes

r/BeTheMatch May 08 '24

Matched! But pregnant

13 Upvotes

After registering 14 years ago I got the call yesterday that I’ve matched with someone with leukemia. However, I’m not able to proceed with next steps to confirm the match or donate at this time because I am currently 20 weeks pregnant, so the earliest I could proceed would be January next year (12 weeks postpartum). I know it’s not within my control but I’ve been thinking about it all day and wishing I could help sooner. Anyone else have a similar experience where things were delayed either due to your own or the patient’s circumstances? I know that either way the timeline can be subject to change due to the patient’s health and/or treatment plan. Although out of my control, I’m just having a hard time grappling with the potential impact of the delay caused by my pregnancy (i.e. I’m worried that by the time I’m eligible to donate it could be “too late” :( ) Appreciate any positive insights!


r/BeTheMatch Apr 25 '24

Question My sibling has been a match, will I?

6 Upvotes

I just signed up today after reading a Reddit post on r/leukemia

I told my brother that I put him as my secondary contact person. He told me he signed up for it in college and was a match about 4 times, the most recent one he was disqualified for because he had a recent surgery.

Because he’s been a match several times, does that I mean I will too? I am retired early from public safety due to an unfortunate accident and I would really like to continue to help if I can.


r/BeTheMatch Mar 14 '24

Need advice from patients/fellow donors!

7 Upvotes

I donated bone marrow to child this past September. I wanted to wait to reach out to the patient/family until they I heard from them, as I did not want to them to feel any pressure to respond.

It’s been six months, and I have not heard anything (not that I expect to hear anything). I still want to reach out, but again I don’t want them to feel any pressure to respond. I’m not sure what to say.


r/BeTheMatch Feb 04 '24

Announcement Be The Match is now called NMDP! Join r/nmdp

3 Upvotes

Join our new sub r/nmdp now that Be The Match has been renamed to just “nmdp” with snazzy new branding too!

Be sure to hit Join over there so you can hear about our upcoming AMA with a live saving volunteer courier who helps transport blood cells for NMDP! 🏥🛫🛬🏥


r/BeTheMatch Feb 03 '24

Announcement Move to r/nmdp with us!

Thumbnail self.nmdp
5 Upvotes

r/BeTheMatch Feb 03 '24

I was a match and now unnecessary

6 Upvotes

I did the screening and received an email later on that I’m not needed now. Does that mean my match passed away? How could they otherwise not need the donation? Or did they get better?


r/BeTheMatch Feb 02 '24

Question Match?

4 Upvotes

I got a call, text email saying I was a match and it was urgent that I call back. I called back and got the run down of the procedures and answered a 15 minute medical questionnaire. They said they’d reach out if I am going to get the blood test. Does anyone have any experience or insight into this?


r/BeTheMatch Jan 30 '24

💜🩵💙💚 Move with us to r/nmdp!

Thumbnail self.nmdp
3 Upvotes

r/BeTheMatch Jan 22 '24

Announcement We’re moving to r/nmdp!

5 Upvotes

EYE CATCHING TITLE! Be The Match is now known as NMDP! We’re doing the same, so head over to r/nmdp and join us there so you can stay connected!

For more details, check out the stickied/pinned post over at r/nmdp on the name change!

💜💙💚


r/BeTheMatch Jan 21 '24

Announcement New name, same mission!

Thumbnail self.nmdp
7 Upvotes

r/BeTheMatch Jan 21 '24

Question Volunteer opportunities with BTM or LLS?

9 Upvotes

My brother recently celebrated his 3 year post BMT birthday! I would love to give back to BTM and/or LLS in some way. I was only a half-match for my brother, and so I’ve always felt a bit guilty that I couldn’t give him his perfect match. But fortunately, BTM was able to find an unrelated donor 12/12 HLA match! I’m just grateful and appreciative for the community, I have a bit more time after switching jobs, and I’d like to give back in some way, even if small. Any places to start with or reach out to?

Thoughts and prayers with you all! You’re all warriors! Whether it’s the bone marrow biopsies, intrathecal, ICU, all the blood draws, waiting rooms, innumerable Zofran, or sharing time with your anxious sister even tho you’d much rather be alone in your room watching Avatar — you’re all so strong!! Best wishes to you all. Xoxo


r/BeTheMatch Jan 19 '24

Question Congrats you’re a match email

12 Upvotes

I just received an email stating I was a match that included a phone number to call or a link to fill out a form to let them know I’m still interested. I’ve read on here people normally got a call, text and email that they were a match. I’ve only received an email, no other form of communication. Is that normal?


r/BeTheMatch Jan 16 '24

Question I’m a match but they aren’t ready for transplant

12 Upvotes

I have received news that I am a match, but the recipient “is not currently ready to receive a transplant at this time.” Has anyone had this happen? I’m hoping everything is okay and am curious what could prevent them from being ready (genuine curiosity, I love learning!)

Thanks! ❤️


r/BeTheMatch Jan 07 '24

Celebration 🎉 Thank you

Thumbnail
gallery
52 Upvotes

Here is my son 50 days after his transplant and what he looked like before. Full of steroids and in the other barely clinging to life. Somebody out there saved him. I just wanted to thank all of you in case I never get the chance to thank him. And if you donated bone marrow 52 days ago from Europe you are my hero and I will never be able to thank you enough.


r/BeTheMatch Dec 31 '23

Question Official Match Questions!

7 Upvotes

Hello!

I received a letter and an email that stated explicitly that I was “officially a match”, it did not say “potential match” in either. I didn’t realize that most people get the “potential match” language until after my phone call. The person on the phone made it seem like the possibility of donation was very likely and again, didn’t use any “possible” language. She said things like “their family will be so happy to hear this!”. I am a female in my early twenties who is very healthy, and am reading that might play a role in things as well.

During the call, I was informed that the patients doctor already knows that they want to do PBSC, and that they already know they want the transplant to take place this spring (March-June). They also were sure to get all of my availability from now until spring, again making it seem like it was likely.

I also did not have to do an extra check swab, and they got me in to do my blood samples asap after my phone call with my health screening questionnaire. I got my blood taken this past week, and am wondering if anyone else has experienced this or knows of what the chances are that I would go on to donate from here?


r/BeTheMatch Dec 17 '23

Post PBSC

10 Upvotes

Hi! Just here to see if anyone else has experienced this…. I would like to start with my overall donation was a bit of a train wreck.

I had to have a central line placed which got stuck while placing and the pain meds they gave me did not cut it. It was sore the entire time. My ionized calcium dropped to 0.6 (critical) while donating and we basically played catch up the entire time with calcium gluconate while they monitored me for seizure and heart arrhythmia. I couldn’t eat or even think straight during the donation.

Fast forward to now.. I am a little more than 2 weeks out from donation and recently noticed my hands won’t stop shaking. I am a nurse that places IVs for a living so this is very important. Had my labs drawn and hgb and total white count is down. I am currently neutropenic and am terrified of getting sick (I work in a hospital setting which is the worst place for someone neutropenic).

Through all of this my coordinator from DKMS literally takes days to get back to me and seems to be mildly interested into what is happening with me. I am exhausted and seems to be getting worse rather than better. I have no contact with the actual donor site or physician.

I’m not sure what to do


r/BeTheMatch Dec 15 '23

Question Age Rule?

8 Upvotes

I’m pretty shocked right now because I received an email telling me I’m a match. I’m currently 36 years old, turning 37 next month.

Would I be able to continue the process or should I decline?

Thank you


r/BeTheMatch Dec 14 '23

Story 📖 PBSC Experience

23 Upvotes

Hi all,

I just completed my PBSC donation yesterday and I browsed this subreddit quite a bit in preparation, so I thought I’d share my experience in case it helps somebody else.

I was called and emailed back in early July telling me that I was a potential match. Went through the standard phone call/blood work/health screening, and in October I heard back that I was the best match. From there, I had 2 more blood draws (about 8 vials each time) and my physical exam.

An at home nurse came to my home all 4 days leading up to the procedure for my filgrastim injections. For me, it was 3 injections (all at once) each day which was a bit of a surprise to me. Overall, I felt okay. I drank plenty of water and alternated Tylenol and ibuprofen every 3/4 hours. The worst pain started on day 2 for me and was in my lower back and rib cage area for the most part. It wasn’t anything unbearable, but I couldn’t have imagined doing any physical activity during that.

Yesterday, I arrived to the donation site at 7:30, had my final round of injections, they took vitals, some final paperwork, then I was hooked up to the machine at about 8:15. I won’t say the needles didn’t hurt going in, but once I was hooked up, the only other pain I experienced was the nurses removing the tape from my skin when I was done 😂

My counts were high and looked good, but my recipient needed quite a bit, so my procedure took about 6-7 hours in total. It was uncomfortable not being able to move either arm, but overall pretty easy! It helped a ton having a companion with me to feed me and provide some entertainment. It’s a long day.

Afterwards, I was extremely tired and still a bit sore from the filgrastim, but now I feel probably 80-90% normal.

Overall, I am very impressed by BTM’s communication and assistance through the entire process. They always checked on me and made sure things were going well along the way. I would absolutely do it again.

Happy to answer any questions, but most importantly, hope everything goes well for the recipient!


r/BeTheMatch Dec 14 '23

Question How’d you feel after PBSC?

7 Upvotes

I donated earlier this week 🎉🎉 and have a lingering headache and some mild cramping various places on my body. Planning on letting my donor coordinator know asap but also wondering if anyone else experienced this post donation - the cramping in particular.


r/BeTheMatch Dec 12 '23

Results question- CMV U?

4 Upvotes

Hi! I just got my initial HLA testing results, and my blood type and CMV status were also included. The CMV staus is just resulted as "U." Does anyone know what this means?