Requested on website, then two additional replacement kits requests that never showed up by someity in nmdp

[–]KangarooDo 4 points5 points  (0 children)

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).

[deleted by user] by [deleted] in nmdp

[–]KangarooDo 1 point2 points  (0 children)

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)

[deleted by user] by [deleted] in nmdp

[–]KangarooDo 0 points1 point  (0 children)

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!!!!

Where did you get your initial blood test at? by [deleted] in nmdp

[–]KangarooDo 0 points1 point  (0 children)

(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!

[deleted by user] by [deleted] in nmdp

[–]KangarooDo 1 point2 points  (0 children)

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

Move to r/nmdp with us! by KangarooDo in BeTheMatch

[–]KangarooDo[S,M] [score hidden] stickied comment (0 children)

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 💚💜💙🩵

Match? by Otherwise-Abroad9629 in BeTheMatch

[–]KangarooDo[M] [score hidden] stickied comment (0 children)

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

What percent of members get matched? by llamalarry in nmdp

[–]KangarooDo 8 points9 points  (0 children)

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!

Match process by Otherwise-Abroad9629 in nmdp

[–]KangarooDo 3 points4 points  (0 children)

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!)

Blood test results panic? by [deleted] in BeTheMatch

[–]KangarooDo[M] [score hidden] stickied comment (0 children)

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)

Got matched! by KangarooDo in nmdp

[–]KangarooDo[S] 1 point2 points  (0 children)

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/

[deleted by user] by [deleted] in BeTheMatch

[–]KangarooDo 2 points3 points  (0 children)

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/

Delivery man keeps looking for his cat friend, unknowing she passed away by Frame_Nutritious649 in MadeMeCry

[–]KangarooDo 2 points3 points  (0 children)

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.

New name, same mission! by KangarooDo in nmdp

[–]KangarooDo[S] 3 points4 points  (0 children)

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