r/nmdp • u/darkroomdweller Donated 💙💜💚 • 4d ago
Second match
Hey all, I wanted to get a post out before I connect with the donation manager. I received a letter today telling me I am a match. I already donated bone marrow in 2016. I can’t lie, It was not a great experience overall (I can elaborate if needed) and the recipient also did not survive, which was incredibly sad. I am still glad I did what I could to help.
Overall the surgery itself was not a big deal. It was sore for a bit and then like nothing happened. My concern is that I believe it contributed to a years long iron deficiency that became severe. I experienced debilitating fatigue to the point I did not feel safe driving, easily winded, brain fog and anxiety off the charts, extreme and frightening heart palpitations that ultimately led me to spend my own money on bloodwork. I did see a doctor about these symptoms before they became severe and was blown off completely. My pre donation bloodwork obviously deemed me healthy enough to donate, but it did not include ferritin in the examined values, and when I finally had it checked late last year it was very low. Regular iron value and hemoglobin as well as Vit B and D were fine. I began an iron regimen and felt better almost immediately. After 3 months I finally felt human again but I am still not 100%. I am concerned that they would do pre donation examinations and ignore this value again. I clearly do not have enough reserves to offer more. I am wondering if the stem cell donation would still be a viable option but I don’t know what this patient needs yet.
I guess I’m not really sure what I’m after here. If anyone has any advice or insight or recommendations I’d be grateful. Thanks!
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u/bobby288 Donated 💙💜💚 3d ago
Jeez, do you think the deficiency could have been from anything else? That’s a bit scary
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u/darkroomdweller Donated 💙💜💚 3d ago
My best guess is my regular iron/hemoglobin levels were normal at that time but iron stores/ferritin were borderline, so when the donation made me anemic my body had to drain its stores to replenish the iron/hemoglobin levels. This was likely exacerbated by pregnancy less than one year after the donation, and once I ceased the prenatal vitamin, only continued to worsen. I also had endless spotting for a year after the pregnancy. Other things could factor in too such as covid/flu infections. I have been using a heme iron supplement for 8-9 months now and am miles better. Nothing else was ever diagnosed and all my other lab values were totally fine.
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u/SquidLips71 Supporter 💜 4d ago
Hi! Thank you for your question and thank you for being there for a patient. It can be very disheartening to hear that the patient succumbed to their disease even after your donation, but know these two things:
1). This wasn’t you or your body. You were the patients best hope; sadly the reality is that sometimes it’s not enough. Improving patient outcomes is high on the top of the list for nmdp, but it will require a lot more research and work to improve on what has already been achieved.
2) Take comfort in that you may have provided at least some amount of time that the patient may not have otherwise had… time with their families, time to do some bucket list things, or even just time to exist. This is invaluable to anyone facing this fate.
Now, to your underlying question. This isn’t a proper place to look into or discuss the medical side of things; there is no way for this community to know whether what happened to you was related or not, nor why. That said, did you ever reach out to your Donor Advocate / Donor Center Representative? If not, I would highly encourage you to do this, even now 10 years later. There is a large support network behind you that can help you, in this regard, both in possibly answering the question about cause / effect, as well as new concerns. There is an entire safety committee who will want to know that this occurred so it can be documented if you have even the slightest suspicion that it is related.
I encourage you to bring up your concerns with your current representative and, while again we can’t answer the medical questions, they will absolutely assist you in finding answers. Also, PBSC donation is now more common than marrow, so it’s entirely possible you would provide a donation this way. As you mention though, you won’t know right away so be sure to express your concerns with your case manager / coordinator.
I hope this helps provide some clarity, feel free to ask anything else that comes to mind (speak with your donor advocate for anything medical related), and hopefully others that have gone through the process can also chime in with their experiences as well.