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View Full Version : Nat'l Bone Marrow Registry ...



txmarinemom
01-21-2008, 02:15 PM
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:

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We both suspect they have outdated information - and Hanson even offered to write a rebuttal to whatever reason they gave.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 I sincerely hope the information is simply outdated because I'd hate to become ineligible!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

Geish
01-21-2008, 02:27 PM
I have been on the list for at least 13 years as a donor. I didn't even think I might no longer qualify as a donor due to surgery! Let me know what they say. I have been called once to donate marrow but didn't make it past the second round. That was back in 97.

Snoopy
01-21-2008, 02:37 PM
I've been on the registry for at least 20 years, but have never been called.

Mary Lou