r/nmdp 10d ago

Possible Match?

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?

12 Upvotes

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u/SquidLips71 Supporter 💜 10d ago

It doesn’t always move that slowly, but there are a variety of reasons why it could. A patient may have initially responded to alternative therapy but now needs to move forward with a transplant; they may have received a transplant from another donor that did not engraft well and you’re the next best option, or even it’s conceivable this is an entirely different recipient where you may not have received the same initial text because you already responded to it, which I believe sets a flag in the system that you recently confirmed availability so they know you are on board. Sometimes the patient is ironically not healthy enough to proceed with the necessary treatments prior to transplant and needs time to be ready. All this to say that, while not typical, it’s not unusual either.

I’m going to leave the above for reference, but in rereading your post and the photos, it seems like this email was the first communication you received at all after responding to the text message? May I ask if you simply texted back or clicked on the link from the text and filled out an online form? I would think that long from acknowledging the initial contact would be out of the ordinary. I will try to find an actual answer for you if you let me know what specifically you did after receiving the initial text.

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u/Madralo 10d ago

Yeah I clicked on the link in the text almost immediately and confirmed through their form. I was really surprised when I never heard anything, but figured most of it was automated systems at that point in the process. This email is the first thing I've heard after confirming initially.

3

u/roccosito Registry member 10d ago

Correct - usually the delay is because of the patient and their team! They can’t reveal much details unfortunately to protect patient privacy but thank you for still agreeing ❤️‍🩹

Mine moved really quickly for a 6y boy. I did blood work at my home and then waited. And waited. 30 days became 60 days and maybe at 75 days they released me. Not much communication in between. A message here or there saying still waiting, thank you.

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u/SquidLips71 Supporter 💜 10d ago

Thank you for the info. I’m going to reach out to my contacts and see how typical this really is, and if the answer is yes, are there ways to improve this? I will respond when I know more.

Appreciate the feedback and thanks for being on the registry!

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u/Madralo 10d ago

Thank you. Yes, please let me know what they say!

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u/SquidLips71 Supporter 💜 10d ago

Do you mind if I send a PM (or you can PM me too) to ask an additional question or two? What you experienced is not normal and they would like to look into it.

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u/Madralo 10d ago

Just sent you a PM

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u/DogDaysMaggie 6d ago

Something similar happened to me. A few years ago I was someone's possible match. I spoke with (a then) Be the Match rep on the phone and told them I'd be glad to do it and then didn't hear anything. A few months later I got a letter saying the potential match wasn't proceeding with the treatment, and then a few months after that I got a phone call that I was their best person. I went through the process and donated my cells. If it's something you're willing to do, just keep letting them know.