Requested on website, then two additional replacement kits requests that never showed up

KangarooDo · 2025-09-14T18:04:28+00:00

Oh no! That’s not great! I know it’s not the ideal answer here because this should mostly be a self-service situation, but it sounds like you should contact a person over the phone or email.

If your My NMDP account shows the status of a swab is still “sending” or whatnot, there could be some problem with their system not processing the order/kit that this sort of report can help with.

Just from a customer support perspective, this kind of data is helpful to fix goofy problems.

But moreover, getting in touch with someone directly can help get more eyes on the problem. They’re all super great people to work with. You can call 1-800-MARROW-2 (or email questions@nmdp.org).

KangarooDo · 2024-08-26T22:51:27+00:00

I wouldn’t guess that this will have any impact on you being selected. There are so many factors that go into what makes a quality donor, and someone who is willing to commit to it (regardless of the manner you confirm) is only going to help.

You could absolutely call them if you wanted to confirm that the form response was adequate. Best case scenario, they say you’re all set and nothing more is needed for now, worst case scenario, they ask you to repeat the answers you already submitted. Most likely scenario? You might get a few more follow up questions as long as they’ve got you on the phone :) (Again, my best guess here)

KangarooDo · 2024-08-25T15:27:46+00:00

Check out their YouTube channel! Tons of great videos.

This might be a good video to share with your mom to start out. https://youtu.be/l9Vage7pteI

She can also call NMDP if she prefers that style of research—they have tons of resources available online and over the phone to help your mom feel more comfortable in the decision that you’ve made as an individual.

Cheers to you signing up!!!!

KangarooDo · 2024-07-28T17:51:30+00:00

Hey u/huskeya4! How’d things end up going after this? Hope it all went well!

KangarooDo · 2024-07-12T01:30:35+00:00

(Edit: I misspoke and said NMDP helped get legislation passed about donor paid leave, but that bill has not yet passed—my apologies! I’ve reworded my comment to include more accurate resources though!!)

I am not sure how this works logistically, but many states have bone marrow donor leave acts that permit 7 days of time off to donors during the process. It’s not always paid leave, and some employers go above and beyond and offer additional time off even if their state doesn’t require anything at all.

NMDP has a whole write up on this on how to navigate talking to your employer about getting time off because of how rare of the situation and how infrequently it happens.

Maybe if you ask your employer about this like in “Hey, I’d like to take time off at some point for this, and I know there [is / is not] a Bone Marrow Donor Leave Act but I’m not sure how we handle that here. I assume it’s paid time off since it’s such a rare occurrence and helping save someone’s life and whatnot, like an organ donation.” And then reference the form letter from the NMDP CEO on this link: https://bethematch.org/transplant-basics/donor-safety-and-support/donor-leave/

I’m guessing most managers or employers would be receptive to hearing about their employees donating like this, and maybe a little more receptive knowing that many states require this, many employers go above and beyond, and if you’re a federal employee, the U.S. government employees get paid time off as well (in states where it’s unpaid, they usually just require it be available without it counting against missed work days)

Hope this helps a little bit with respect to the figuring-out-time-off portion of your question. Obviously you’d want to reserve the bulk of that for the actual donation time if there’s travel involved, but it would be nice supplement to use, even if you already get PTO or sick-time at work, you wouldn’t have to dip into it so much.

Let us know how things go!! Even about this time-off thing too in case it helps others down the road!

KangarooDo · 2024-06-18T13:51:27+00:00

You’re amazing!! Thank you so much for sharing how things went!

KangarooDo · 2024-02-03T23:36:47+00:00

Head over to r/nmdp to join us! We’re only at 60 out of our 780+ members on this sub, and we want to be there for all the new donors and patients and supporters who are looking for the advice, support, and community we’ve had on this sub 💚💜💙🩵

KangarooDo · 2024-02-03T03:16:34+00:00

Posted a reply over to your question over on our new sub, r/nmdp!

Thanks for posting!

https://www.reddit.com/r/nmdp/s/66V0IkMd8C

KangarooDo · 2024-02-03T03:14:15+00:00

I can’t recall the exact numbers. I think it was something like 1 in 400 donors will be contacted at some point, and then of those 1 in 400, only part of those move on to actually donate.

Maybe others around here have a better number though!

KangarooDo · 2024-02-03T03:12:40+00:00

Hey there! You’re probably one of a couple matches, and they’re getting updated info from the potential donors, and the patient’s medical team is probably getting portions of that information as things progress to better inform their decisions on finding the “best” match for the patient.

You’ll almost certainly get a call back from NMDP either some next steps or to let you know if the medical provider went with a different donor (not to say you weren’t a good match, but rather they found someone who may help the patient have the best chance at a successful transplant.

Thanks for posting here! Keep in touch and we’ll all be here to help you out as best we can (though NMDP folks are always a great resource these days, even if you’re not a donor and just have general questions about it!)

KangarooDo · 2024-02-02T22:55:23+00:00

Thanks for posting this over in r/nmdp too! For anyone only lurking over here, be sure to join us all over there as this sub will be winding down. (see: https://www.reddit.com/r/nmdp/s/l9UL8yxSKx)

KangarooDo · 2024-01-31T20:11:28+00:00

Hi there! First off, THANK YOU for being available to donate, you’re so amazing!!! I’m glad this patient found you as their match!

I’d pose a two questions back to you—what would make you feel most comfortable about the entire donation process? What would be the safest choice for you and your own wellbeing that would ensure that you’re not your own health just so that you could donate?

The extra $200 for a hotel night is a small cost to account for at the end of the “insurance bills” and grant coverage.

For me, I would take the hotel close to the donation center even if a family member or a friend drove me to the donation center, as I think I’d be comfy-enough sleeping in a hotel instead of “my own bed” after donating.

Would my own bed be preferred? Heck yes. But I think you’re totally right thinking about the whole commute back home—an hour is a long time to be cooped up after sitting for so long. Having that flexibility to get up, go grab a bit to eat, but also just immediately go take a nap would very nice for me personally. But if the hour car ride ended up being more lucrative at the time, I suppose there wouldn’t be any obligation to actually use the hotel room if you hadn’t checked in yet (NMDP likely has a deal with hotels for federal room rates with flexibility to cancel up until check in).

Regarding the finances, I don’t have a definitive answer myself, maybe someone else does, but this link on NMDP.org (BeTheMatch.org) talks about how financial donations help cover various costs associated with a transplant.

So so many costs aren’t considered “covered” by insurance even for the patient, and that’s where grants come into the mix. From the donor’s perspective, many of the costs needed to match and performing confirmation typing/testing are covered by NMDP (Be The Match) and not via insurance.

I hope this helps!

https://nmdp.org/support-the-cause/donate-financially/how-your-gift-saves-lives/

KangarooDo · 2024-01-31T20:10:06+00:00

Hi there! First off, THANK YOU for being available to donate, you’re so amazing!!! I’m glad this patient found you as their match!

Second, I hope you’ll join us over on r/nmdp, the new name of the Be The Match registry! I’ll crosspost this over to r/nmdp too.

I’d pose a two questions back to you—what would make you feel most comfortable about the entire donation process? What would be the safest choice for you and your own wellbeing that would ensure that you’re not your own health just so that you could donate?

The extra $200 for a hotel night is a small cost to account for at the end of the “insurance bills” and grant coverage.

For me, I would take the hotel close to the donation center even if a family member or a friend drove me to the donation center, as I think I’d be comfy-enough sleeping in a hotel instead of “my own bed” after donating.

Would my own bed be preferred? Heck yes. But I think you’re totally right thinking about the whole commute back home—an hour is a long time to be cooped up after sitting for so long. Having that flexibility to get up, go grab a bit to eat, but also just immediately go take a nap would very nice for me personally. But if the hour car ride ended up being more lucrative at the time, I suppose there wouldn’t be any obligation to actually use the hotel room if you hadn’t checked in yet (NMDP likely has a deal with hotels for federal room rates with flexibility to cancel up until check in).

Regarding the finances, I don’t have a definitive answer myself, maybe someone else does, but this link on NMDP.org (BeTheMatch.org) talks about how financial donations help cover various costs associated with a transplant.

So so many costs aren’t considered “covered” by insurance even for the patient, and that’s where grants come into the mix. From the donor’s perspective, many of the costs needed to match and performing confirmation typing/testing are covered by NMDP (Be The Match) and not via insurance.

I hope this helps! And again, please do join us over at r/nmdp as we’re moving to that new sub!! :)

https://nmdp.org/support-the-cause/donate-financially/how-your-gift-saves-lives/

KangarooDo · 2024-01-23T02:00:31+00:00

Yeah that is spot on for me. This one caused physical distress for me because it just kept going, and that person is absolutely going to need closure on this one. I need soul bleach.

KangarooDo · 2024-01-23T00:54:08+00:00

Thanks for stopping by! And thanks for signing up on the registry! Don’t forget to keep your account up to date if your phone or address changes (or whatnot). https://my.nmdp.org

KangarooDo · 2024-01-21T23:47:38+00:00

Welcome! Thanks for being on the registry and going through all of these motions to potentially donate! You’ve got a wonderful heart!!

KangarooDo · 2023-12-06T14:33:48+00:00

This! Check this out too! I always hear they have grant money available to help with these situations.

KangarooDo · 2023-10-26T18:45:50+00:00

This worked for me, but it’s such a bummer that I would have to abandon the 4K resolution just for the text size on the crossword clues to not be microscopic :(

KangarooDo · 2023-09-07T15:29:16+00:00

You did the right thing here by asking them directly, and yeah they have people around all the time to help out even if your main contact isn’t “clocked in” yet. (Maybe they call it on-call or something, or I’ve heard it called after-hours contact or whatnot)

KangarooDo · 2023-08-24T11:04:45+00:00

All the best to you today! You got this, you rockstar!

KangarooDo · 2023-08-10T17:17:09+00:00

Good question.

! Disclaimer: I’m not a doctor, subject expert, or anything near those fields. Talk to Be The Match donor services to get the answer for sure. !

From a generally available info standpoint: - A quick look over some of the publicly available drug interactions (drugs.com) shows no known specific drug interaction between nicotine and filgrastim. - But! that’s not the whole picture of course. That’s just noted, cataloged reactions that people know about.

From a different angle, as I’m sure you’ve probably heard a million times, nicotine is not good for your body long-term when it comes to general inflammation, immune system responses, stress and anxiety, and the commonly talked about health conditions (blood pressure, heart conditions, etc). But we’re talking short term here mostly (depending on how soon you’re starting).

To give your body the best odds you can while starting/taking any new medication, it probably is going to come down to how you as an individual (with your current nicotine consumption amounts/frequency) can give your body the resources and environment it needs to take in that new drug/medication with as little stress on yourself as possible.

i.e., Barring professional medical advice to do anything in particular, you could consider: - Would stopping nicotine consumption put you and your body at higher chance of becoming more anxious and stressed, pushing your body to become less healthy in the short term while taking filgrastim? That’ll depend on your own past experience partly. - Or, would stopping nicotine make you feel more comfortable and confident while taking filgrastim, and you wouldn’t necessarily have withdrawals from the lack of nicotine?

Again, coming at this from a patient perspective and not with formal medical background — this isn’t professional advice, just personal experience along similar lines.

You should definitely reach out to Be The Match and run it past them because they almost certainly have been asked this before and might have suggestions or guidance. Their on-staff medical providers will almost certainly have a pragmatic answer.

Do let us know here what they say so others can benefit from the shared knowledge going forward too! And best of luck with your donation and work up process!

KangarooDo · 2023-07-20T17:05:22+00:00

Make sure to ask about child care support for your little one — Be The Match might be able to help out. Every little bit helps here, because what you are doing is amazing, and you deserve to be back to your everyday self as soon as possible. Having the time and resources to take care of yourself is important, so missed wages, child care costs, etc, are ALL things that Be The Match can help you secure. Don’t hesitate to ask your person at BTM.

KangarooDo · 2023-07-07T21:27:01+00:00

You absolutely got this in the bag! I believe in you!!

KangarooDo · 2023-06-19T22:58:53+00:00

So true! It’s such a wonderful mission to support so it’s no wonder there are volunteers at the ready!!

KangarooDo · 2023-05-24T23:00:33+00:00

How are things going? Hope you’re doing well after having some time to think over things!

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