As someone who has donated through the National Marrow Donor Program, I will say that at times it seemed a little scattered. I donated in the summer of 2008 in the Washington, DC area, so my memory is a bit fuzzy at this point. I do recall however, that the woman who was my point of contact had to do a lot of back and forth with the place that took my donation (I did peripheral blood stem cell donation, which is the direction things are going, rather than marrow) in order to arrange testing to make sure I was healthy enough to donate. Then she had to set up a visiting nurse come to my home to give me the filgrastim injections to get my body to produce more of the PBSCs (this was for 5 days before the donation). And that had to be coordinated with when I could then go do the donation.
The other thing to keep in mind is that sometimes the patient is actually too sick to receive the transplant. I think my donation got pushed back for a while because the recipient took a turn for the worse. As his general health improved, we then had to go through the testing/paperwork rigamarole again.
It's several moving parts, and it seems like they try to work with whatever hospital/clinic is nearest to you in the region, so I can see if your point of contact was disorganized, they could have easily screwed up where information was sent. It sounds like in your case, that person royally screwed up on a repeated basis, but the steps that go into giving the donation while trying to be as convenient as possible for the donor do seem like a fiasco waiting to happen if the organization happened to have a disorganized person doing that job.
esmejones3 karma
As someone who has donated through the National Marrow Donor Program, I will say that at times it seemed a little scattered. I donated in the summer of 2008 in the Washington, DC area, so my memory is a bit fuzzy at this point. I do recall however, that the woman who was my point of contact had to do a lot of back and forth with the place that took my donation (I did peripheral blood stem cell donation, which is the direction things are going, rather than marrow) in order to arrange testing to make sure I was healthy enough to donate. Then she had to set up a visiting nurse come to my home to give me the filgrastim injections to get my body to produce more of the PBSCs (this was for 5 days before the donation). And that had to be coordinated with when I could then go do the donation.
The other thing to keep in mind is that sometimes the patient is actually too sick to receive the transplant. I think my donation got pushed back for a while because the recipient took a turn for the worse. As his general health improved, we then had to go through the testing/paperwork rigamarole again.
It's several moving parts, and it seems like they try to work with whatever hospital/clinic is nearest to you in the region, so I can see if your point of contact was disorganized, they could have easily screwed up where information was sent. It sounds like in your case, that person royally screwed up on a repeated basis, but the steps that go into giving the donation while trying to be as convenient as possible for the donor do seem like a fiasco waiting to happen if the organization happened to have a disorganized person doing that job.
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