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Thread: National Marrow Donor Registry and Scoliosis Surgery ...

  1. #1
    Join Date
    Nov 2007
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    Houston, TX
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    1,757

    National Marrow Donor Registry and Scoliosis Surgery ...

    I've been on the registry for several years, and found out prior to surgery that according to current guidelines, scoliosis surgery makes you ineligible.

    Currently, I'm communicating with the Marrow Liason through our local Blood Center to remain on the registry.

    Today, in fact (like an hour ago), I spoke with her again; she got me to email her all the details of my surgery, and she is forwarding to the approriate person at the NMDP to determine if this exclusion is outdated - or even valid.

    Hanson and I discussed this before surgery, and he was as puzzled as I am WHY surgery makes you (what reads as permanently) ineligible. He even offered to write them with his opinion if necessary.

    The section that outlines this exclusion is located here.

    Specifically, it defines the exclusion as:

    "Placement of rods or pins for scoliosis".

    Most other back surgeries listed make you ineligible for 2 years post-op. This exclusion makes absolutely no sense to me OR my doctor.

    Lord knows there's a shortage of donors. I intend to fight to remain on the registry!

    I'll let everyone know the answer as soon as I get it .

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  2. #2
    Join Date
    Jan 2006
    Location
    PA
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    778
    Pam,

    I hope your surgery doesn't make you ineligible forever. Like you said, Lord knows there's a shortage of donor already, so every one counts. Have you ever been called to be tested as a possible match?

    I've been on the registry for over 20 years and have never been called. I think it would be a great honor to be able to donate.

    Keep up the fight and keep us posted!

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  3. #3
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445

    loves to skate

    Good for you Pam and Mary Lou,
    That only makes sense if you are fused to the sacrum since usually the bone marrow is harvested from the sacrum. The rods would probably be in the way of getting a good harvest. I will be interested to find out what you come up with Pam. I applaud all of you who are willing to be marrow donors. My age already excludes me unless that has been changed. Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  4. #4
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by Snoopy
    ... Have you ever been called to be tested as a possible match?

    I've been on the registry for over 20 years and have never been called. I think it would be a great honor to be able to donate.
    No, same here, MaryLou ... never been a match. And yeah ... it would be *way* cool to be able to offer someone that gift! A bit of discomfort to possibly save someone's life? How can you say no?

    For that matter, I'm puzzled why more who CAN don't donate blood.

    I'd like some commitments here that if we ARE eligible, some more people will get typed and on the registry? They are in SERIOUS need ...

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  5. #5
    Join Date
    Nov 2007
    Location
    Big Bear, CA
    Posts
    290
    I've been on the registry for years. I was called once about 11 years ago as a potential match but didn't make it through to the second round of matching. I would gladly donate marrow...now blood, thats a different story! I hate needles I know I am a big chicken, but they knock you out to get the marrow. I sure hope the surgery doesn't make me ineligible to donate.

    I do wish that the registry would make it more affordable to sign up. I was able to sign up for free, but many are put off when they hear it can run over $50 to sign up to donate. I know both my girls(15 and 20) would sign up, they are both organ donors in case of accident.
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

  6. #6
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Geish,

    Like you, I was able to sign up for free--a nearby community did a drive in search of a match for a young boy and I paid nothing.

    I'm glad to hear that your daughters are signed up as organ donors. My 16 y.o. just got her driver's license last week and without hesitation, she said yes to becoming a donor. I was so proud!

    Pam,

    I love this forum! We're all here because of Scoliosis but now we are encouraging bonor marrow registry and blood donation. So cool! Keep up the good work!

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  7. #7
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    The NMDP is acually running a free campaign now (visit www.marrow.org), and I can almost guarantee if you call your local blood center and explain an inability to pay they'll type you for free at ANY time. Reality is they need donors too badly to force a fee on those it would deter from registration.

    I didn't pay anything to join either: It's been a long time, but if I recall correctly, I was asked if I wanted to join during a routine blood donation and they did all the typing there.

    If inability to pay is all that prevents you from joining the registry, please call your local blood center or the NMDP Donor Advocacy office at 800.526.7809.

    MaryLou and Geish, that's awesome your kids are willing to be organ donors (and it goes without saying, I pray their "services" are never required!). Mine are too, and both have donated blood regularly since they came of age.

    I encourage everyone with a desire to be an organ donor to discuss your wishes with friends and family. Make sure there's no doubt in their mind of what you wanted.

    My family has discussed it at length, and I've also made clear I want my body donated to science. With all my quirky afflictions (hydrocephalus, scoliosis, etc.) perhaps it can benefit future generations. I certainly won't need a physical shell after I pass.

    (It sounds macabre, perhaps, but I have noted I want my hardware removed before body donation ... that scrap metal costs more than my car - LOL!)

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

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