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Anyone else run across this issue?
Although I've never come up as a match, I've been on the donor registry for 10-15 years (hell, before the days of the 'net ... soapbox moment, it's such a small thing - bigger than giving blood - but how can you put a value on an opportunity to save a life??? I encourage everyone who can to get typed!).
*Anyway* ...
I've been totally bummed after noticing on the "Exclusions" list to donate is:
I asked Hanson about the reasoning at pre-op the other day, and he had no clue. Obviously an autograft would slow down your own marrow production/ability to spare without compromising your fusion, but allograft/BMP can potentially complete a fusion in 2-3 months (vs. a year with autograft) ... and neither of us could even fathom why it would exclude a donor permanently.
We both suspect they have outdated information - and Hanson even offered to write a rebuttal to whatever reason they gave. (I'll take this blatant seque to mention for the 123rd time how much I adore my surgeon!)
I called the registry this morning to plead my case and question the logic - and landed in voice mail purgatory. The recording encouraged a call to your local registry for immediate answers ("I'm ADHHHHD, people ... is there any other type of response???!").
I called the Gulf Coast Regional Blood Center (where I was originally typed) and even the girl to whom I spoke didn't know why. She did tell me it doesn't take you off ad infinitum, but it *does* for 5 years - and couldn't answer why to that either.
She's contacting the Nat'l Registry to explain my circumstances, and will call me back later today. I sincerely hope the information is simply outdated because I'd hate to become ineligible!
(sadness.)
I'll post her answer back as soon as I hear back! Argh ... I can't take it ... I'm calling now ;-).
Best regards,
Pam
Although I've never come up as a match, I've been on the donor registry for 10-15 years (hell, before the days of the 'net ... soapbox moment, it's such a small thing - bigger than giving blood - but how can you put a value on an opportunity to save a life??? I encourage everyone who can to get typed!).
*Anyway* ...
I've been totally bummed after noticing on the "Exclusions" list to donate is:
- Placement of rods or pins for scoliosis
I asked Hanson about the reasoning at pre-op the other day, and he had no clue. Obviously an autograft would slow down your own marrow production/ability to spare without compromising your fusion, but allograft/BMP can potentially complete a fusion in 2-3 months (vs. a year with autograft) ... and neither of us could even fathom why it would exclude a donor permanently.
We both suspect they have outdated information - and Hanson even offered to write a rebuttal to whatever reason they gave. (I'll take this blatant seque to mention for the 123rd time how much I adore my surgeon!)
I called the registry this morning to plead my case and question the logic - and landed in voice mail purgatory. The recording encouraged a call to your local registry for immediate answers ("I'm ADHHHHD, people ... is there any other type of response???!").
I called the Gulf Coast Regional Blood Center (where I was originally typed) and even the girl to whom I spoke didn't know why. She did tell me it doesn't take you off ad infinitum, but it *does* for 5 years - and couldn't answer why to that either.
She's contacting the Nat'l Registry to explain my circumstances, and will call me back later today. I sincerely hope the information is simply outdated because I'd hate to become ineligible!
(sadness.)
I'll post her answer back as soon as I hear back! Argh ... I can't take it ... I'm calling now ;-).
Best regards,
Pam
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