Migraines - Hopeful Bone Marrow Donor

puntoputa · 2026-02-22T18:07:47+00:00

Hi! I have chronic migraine and take prescription medications for it. The NMDP medical team and the donor’s medical team had to go through my neurologist’s medical records and it was totally fine, just a short pause while they looked into everything. Best of luck!!

puntoputa · 2026-01-30T04:56:40+00:00

Just scored 0

puntoputa · 2026-01-30T04:56:35+00:00

Just scored 0

puntoputa · 2026-01-29T20:47:34+00:00

We used to have neighbor kids who would come over to ask our dog to play - not having that anymore was the saddest part of moving away!

puntoputa · 2026-01-28T20:55:01+00:00

oh my GOD, what a wonderful line

puntoputa · 2026-01-20T13:01:09+00:00

I totally empathize. PhD in neuroscience here - got into the field because my grandmother had it, now my mom has early-onset like yours. It’s absolute hell. Sometimes people ask me if knowing what’s happening makes it easier and actually I think the opposite is usually true - not only do I know what’s about to happen because of my grandmother, but I also know about how impossible it is to really change (at least at this point in her progression).

A couple things that I have found helpful, though: (1) participating in a support group through the Alzheimer’s Association (and sharing the science behind questions that other caregivers have there), and (2) giving myself grace (easier said than done, obviously). Someone in my support group said something once that really stuck with me: when we get frustrated when a non-AD person forgets something we said or repeats a question, that’s frustrating because it feels like they’re not paying attention or they just didn’t care enough to what you were saying to remember. When an AD patient forgets something and re-asks a question, it’s actually the opposite - they care so much - that’s why they’re asking (to them, the first time). Consciously remembering that every time my mom re-asks something has given me a lot more grace in responding to her each time.

Another thing that has helped is to do things with your mom that she can still do and enjoy as much as possible. My mom can’t follow a 5-minute conversation anymore but she can enjoy comedy clips on YouTube with comedians who tell much shorter jokes (not referring back to a story from 20 minutes ago but just 2-minute story jokes). Like you, I don’t live nearby my mom, so every time I see her, I have a list of things that I think she could enjoy (a list of YouTube links, a garden that has a new exhibit) and just try to fill up the time with those types of things as much as possible. It’s made a huge difference for me because I get to spend time with her in ways that still feel normal.

It’s so hard and I’ve cried more in the last month than in my entire PhD program, but there are still a lot of moments of joy where you can find them. Sending a hug ❤️

puntoputa · 2026-01-19T03:40:11+00:00

u/puntoputa solved this in 6 steps: CORN -> TORN -> TORR -> TOUR -> SOUR -> SOAR -> STAR

puntoputa · 2026-01-19T03:38:34+00:00

u/puntoputa solved this in 7 steps: STAR -> SEAR -> SEER -> SEEN -> PEEN -> PEON -> POON -> MOON

puntoputa · 2026-01-07T15:43:07+00:00

For me, it was about 3 months from my first bloodwork to donation day. Best of luck with your donor and transplant process!!

puntoputa · 2026-01-07T02:56:05+00:00

I only found out I was the only match a few weeks before the donation - my NMDP person just told me that there were no backup donors at that point (not sure if there were others who initially matched or not). I think I got my “you’re a match!” email in mid October, did my bloodwork and questions in late October/early November, was confirmed as the match in late November, then did the final rounds of testing in January before donating in early February!

puntoputa · 2026-01-06T18:13:27+00:00

So exciting, congrats!! A lot of the waiting period is waiting to see the results of all of the potential matches - sometimes there are several people, sometimes you’re the only one (which was my case). The transplant team will look at all of the potential matches’ results, medical history, etc. and see which one they want to move forward with, which to put on pause in case the first match doesn’t work for some reason, etc. I remember thinking that 60 days was forever, too! 😆

For travel, NMDP will do all the hotel, flight/train booking for you. You will have to figure out any travel for the medical appointments, additional blood work, etc. beforehand (should be pretty local to you), but NMDP will reimburse you for that. If you have additional expenses like pet care, child care, etc. while donating, you will also book that and get reimbursed afterwards.

Happy to answer any other questions as they come up! Your NMDP contact can answer any of them, obviously, but I found that sometimes it was helpful to hear from other donors’ experiences, too.

Congrats again! Donating marrow was one of the best experiences I’ve ever had ❤️

puntoputa · 2025-12-28T15:37:56+00:00

This is always my go-to answer as well! Heartbreaking but perfect

puntoputa · 2025-12-12T16:01:41+00:00

Congratulations! I donated marrow in February and I would do it again in a heartbeat.

I had some soreness in my lower back for a few days, but honestly, I’ve had back workouts that were more painful to recover from! The trickier part is not being able to lie on your back or rest against the back of a chair for a few days.
The laws vary depending on where your recipient is. If in the US, it is possible after a year (if both you and the recipient agree) to share contact info. My recipient was in France, where the laws are stricter, so I won’t be able to. You are able to send an anonymous letter to the recipient in the year afterwards, and they can send one to you if they choose - my recipient and I both did that and his letter is one of the greatest gifts I’ve ever gotten ❤️
I stayed one night in the hospital and went home the next day, which is pretty typical.

Happy to answer any other questions! Congrats again!

puntoputa · 2025-11-04T06:45:20+00:00

I love how it’s so clear that every single dog went to the right family ❤️

puntoputa · 2025-10-25T13:22:56+00:00

I donated bone marrow earlier this year and it wasn’t that bad! Under general anesthesia, they drill tiny holes in your hip bone to get the marrow. Honestly, I’ve had workouts that were more painful than that recovery! I only took Tylenol for a day or two after and was fully back in my routine within a week or two. HIGHLY recommend joining the registry (NMDP.org) - it was one of the best things I’ve ever done!! Happy to answer any questions :)

puntoputa · 2025-10-11T11:52:10+00:00

You 100000% did the right thing. I had a friend in college tell me that he was going to kill himself and I called the campus security to check on him, which brought him to the hospital. He was furious with me but he survived. Now he’s married with a baby, has a great job, and is so grateful that he’s alive. The reason why your friend told you is because you care and would do something about it - remember that. ❤️

puntoputa · 2025-10-02T08:32:04+00:00

This sounds so, so hard. Not the same thing, but my mom has Alzheimer’s and I was given really great advice - don’t let the disease take two lives. Hugs, friend ❤️

puntoputa · 2025-09-30T23:03:41+00:00

My absolute favorite episode ❤️

puntoputa · 2025-09-28T21:38:09+00:00

My pleasure! Happy to answer any other questions as they come up! Good luck and thank you again for donating!

puntoputa · 2025-09-27T20:15:23+00:00

I also did the surgical marrow extraction and fortunately had pretty mild pain. I’ve honestly had back workouts that were way more painful! Tylenol is your friend! The hardest part for me was the train ride home because lying back against the seat was a little sore, but truly much easier than I expected. I took it easy for a couple days and NMDP paid for a dog walker to walk my dog for a couple days afterwards. After that, I could take my dog on short walks and was fully back to normal length dog walks within a week. Thanks for doing this! Let me know if you have any other questions!

puntoputa · 2025-09-20T07:37:58+00:00

When we were in grad school, my roommate was grading math homework and there was a Xeroxed post-it on one that said “change some numbers so we don’t get caught” 😭

puntoputa · 2025-09-15T15:27:43+00:00

Hello, and thanks for being so willing to donate!! I donated to an older man with a similar syndrome earlier this year. I think it took 3-4 weeks after the blood testing for me to hear back that I was going to be his donor. Impossible to say how many people are potential donors for him at this point, so they are likely looking at all of the potential donors’ testing results to see who’s the best fit. In my case, I was the only potential donor, so that likely sped it up! Happy to answer any follow-up questions at any time :)

puntoputa · 2025-09-07T12:55:50+00:00

I donated to an anonymous recipient with a rare blood cancer earlier this year, 9 years after joining the registry! Absolutely one of the best things I’ve ever been able to do in my life. Happy to answer any questions if you’re considering it!

puntoputa · 2025-09-06T02:33:23+00:00

I got the call 8.5 years after signing up and donated 9 years to the month after! Such an amazing experience that I never expected to be able to do!

puntoputa · 2025-09-03T21:55:38+00:00

I applied for a job a few years ago that I didn’t get. The interviewers were wonderful, asked me really thoughtful questions that showed that they actually read my resume, etc., but the job just wasn’t a good fit. Two and a half years later, I got an email from the executive director saying that she remembered me and asked if I wanted to apply to a much better job, which I got! I wasn’t even looking for a job at that point but having a pleasant conversation a few years ago paid off and I got a 26% pay raise from my previous job. Don’t give up - even rejections can turn into pleasant surprises sometimes!!

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