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Author Topic: Bone Marrow Registry - Now you can join the "Be The Match"  (Read 1883 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: September 03, 2010, 11:53:43 PM »

Kidney patients would probably not be eligible, but I thought I would post this for others to share.
It's a much simpler process to join!

Back when I joined the Bone Marrow Registry, there was a $70 fee to join, which was waived for minority groups whose tissue was in greater demand. This fee was also waived if you're willing to donate a pint of blood at the hospital donor center, which I did. I hope this new kit creates a much bigger network of potential donors!

Now you can join the Be The Match Registry (formerly known as the National Marrow Donor Program Registry). It takes about 30 minutes online. Here's the process:

1. Go to http://www.marrow.org and read about marrow donation.
2. From the home page, click on the Join the Registry tab, then click on Join Now.
3. Read the consent agreement and set up your account (email and password).
4. Complete a brief health questionnaire, similar to but much shorter than the blood donor questionnaire.
5. Fill out a form with basic information about you--name, address, ethnicity, etc.
6. Order your donor kit and make an optional charitable donation. The cost of testing is $100 but you aren't required to pay for it.
7. Confirm the information.

As an internet enrollee, you will get a donor kit in the mail in about a week that includes cotton swabs for taking a sample of tissue from your cheek, then mail that back so they can do tissue typing that goes into the registry for matching purposes.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Riki
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« Reply #1 on: September 04, 2010, 07:01:07 PM »

My best friend signed up for this a few weeks ago.  She  also donates blood on a regular basis.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: September 04, 2010, 10:06:45 PM »

 :2thumbsup;

This is from my friend Michael:

The kit arrived two days ago. There's an introductory letter, a small brochure that explains the marrow donation process, and a set of four cotton swabs and a mailer for sending your cheek cell samples.

It took only a few minutes to read through the instructions, swab my cheeks, and prepare the mailer. It's going in the mail today.

A few items I learned:
> There is about a one in 200 chance you'll match someone--that's a 0.5% chance. (Of course, there's a zero percent chance if you don't register!)
> If you're selected to donate, it takes up to 30 to 40 hours spread over a 4- to 6-week period.
> All donation costs are covered... including travel.
.............
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
cariad
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« Reply #3 on: September 05, 2010, 03:14:10 PM »

I would do this is in a flash if I could specify that I am offering only for PBSC. I know you can turn down the request, but I do not know if it came to it if I would really be able to do that. My first donor donated bone marrow and the procedure was so intense that the recipient was dead before he fully recovered. I know that is not a fun story to hear, but it's true. I don't think I could go through that sort of pain atop everything else I've experienced. And the odds are still not that great for many of these cancers that they are trying to send into remission. I am sure my donor does not regret the decision, and his was a special case, so I don't want to scare anyone off.

PBSC I have already donated, granted it was to myself, and if I do not use them, they will be donated to science but can never be used toward a stranger. The process is not fun, but it boils down to a few injections that make you feel achy, and several hours on the apheresis machine. Of course, with my terrible veins, I would have to have a tunnelled line placed again to go on the machine. I will certainly think about this after my trial is over - I think the surgeon would be rather unamused if I signed up for elective surgery before that time.

This is a great service though. Sounds so easy - they used to draw blood for this. How things have changed.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
carol1987
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« Reply #4 on: September 08, 2010, 06:15:20 PM »

This is a great program..  I registered many years ago and was never called. Now I can't donate since i have PKD   :(
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
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