u/BearMama0321

UPDATE: They reached out! We’re playing phone tag but I have the MA’s email, too. Thank you for the insight & support. To be continued!

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Hi everyone!

I (45f) registered as a non-directed donor through NKR. Initial bloodwork all came back spectacular. I selected my transplant center over a week ago… and haven’t heard back.

Is this typical? Should I reach out to the center directly? I’m feeling deflated already. The person I was emailing with through NKR got kind of short with me when I asked questions… not a good vibe.

Any guidance or encouragement is appreciated.

UPDATE: I filled out the initial screening info at the NKR; am being sent for initial labs. I’m excited, nervous, and so so so motivated. 💪Thank you for the support. 🫘❤️

Hi all!

45yo woman here. My 7yo son has stage 3 CKD due to reflux nephropathy and an undiagnosed UTI as an infant. Destroyed his right kidney & partially scarred his left. I’ve written about our story many times. Devastating to say the least.

He’ll need a transplant; we just don’t know when.

I’m pretty healthy; had a kidney stone when I was 21 and on Topamax for migraines (stopped taking it after). 2 c-sections and a hysterectomy. Slightly overweight but by, like, 5lbs. Active. Fit. Labs great. BP great. Don’t drink/smoke.

I’m also… 45. How long will I stay healthy? I don’t know. I have a demanding job, two kids, a lot of responsibility.

I have wanted to be my son’s donor since his diagnosis. In my mind, I failed him; it was 2020, height of the pandemic, and we took him to SO MANY DOCTORS… none of whom tested his urine. Everyone tells me it’s not my fault that his UTI went undiagnosed. But as his mom… it’s hard for me to accept that.

My challenge and question is: should I donate NOW, through the voucher program, while I’m still healthy? This guaranteeing him advance position on the recipient list when he’s in need?

Or should I wait and hope that I’m still eligible to donate directly TO HIM when he needs it? That could be 3, 5 or even 15 years from now (but more likely a few years from now).

Appreciate any perspectives or input. It feels like a gamble either way… coupled with mom guilt/grief; weighty decision.

Thanks, and thanks to all who have donated. 🫶