Saturday, March 31, 2012

Bone Marrow Registry

The Story:
A few weeks ago I needed to fill my gas tank and I was being all sorts of spastic. I hadn't been to that gas station in a while and I just couldn't remember if I had to go in first, could start pumping gas first, had to flip a lever, had to push buttons, I was just struggling and tried all the wrong options first. Anyways, this particular gas station has TV sets at each pump to tell you the weather and generally random news that isn't very important. BUT on this particular semi-spastic day, I finished pumping gas at the end of a very moving commercial regarding a little boy with aplastic anemia and how this particular case is so far along that it will be fatal without a bone marrow transplant.
I always watch those commercials and feel bad/sad for the family, but I never feel any connection to the families. Most of the time I feel how lucky and blessed that we aren't going through what the family is going through. However, this time it was different. Kyle needs a donor who is Asian and Caucasian. This may sound horrible, but it had never occurred to me that recipients would need specific combinations of races and I realized the impact the lack of donors registered within that criteria.

As someone who fits that criteria I knew I needed to find out more.

The Decision:
I took some time to research and to think about the procedures (bone marrow transplants and peripheral blood stem cell donations) as well as what it means to be a match for someone (I've included some facts and some of the donor criteria at the bottom). I spoke to several of my friends whose first responses were, "The recovery is supposed to be really painful!" However, I realized I was always replying back, "But you could be saving a life!" For me, one week of recovery pain outweighs the possibility of saving a life and I knew it was time to start the registry process.

The Test:
I went onto the registry site and filled out an application to be entered into the registry. There are no locations near me so I had them mail me the the cheek swab test. The test contains the 4 q-tips to swab your cheek, some instructions with diagrams as well as a pre-paid return envelope to mail it back. I looked at the diagrams, swabbed the inside of my cheeks, and mailed the q-tips back. Now, I wait to be entered into the registry and will be contacted if I'm ever a match for anyone in the databases.

If I am considered as a potential match:
If my results come close to someone in need of a transplant they will do several more tests (cheek swabs and blood tests) and have a physical exam to make sure that I would be the best candidate. The procedures would be an outpatient procedures and depending on which procedure I was a match for I would be minimally impacted. The websites say the total time contribution for a bone marrow donor would only be a total of 30-40 hours over several weeks but you can always change your mind if you don't want to donate anymore.

For me, choosing to register as a donor is similar to selecting "Organ Donor" on my license. It is an opportunity to give hope and potentially help save a life.
Some Facts (from marrow.org):
For every 540 donors there is 1 match.
It costs $100 to add a donor to the registry (cost for testing, searching patients, related costs).
Donors do not have to pay for anything, all costs (travel expenses, medical costs, etc) are covered by the National Marrow Donor Program. 
Most popular request are for peripheral blood stem cell (PBSC) donations which are non surgical.
Some Donor Criteria (from marrow.org):
Ages 18-60 (pref is to 18-44 because cells from younger donors lead to more successful transplants).
If you are healthy you are generally a good candidate (ig you can have allergies, piercings/tattoos, blood pressure, depression, etc don't matter).  Click here for more information.
If you are interested in learning more I have included the links below:
Kyle's Story: http://kyleneedsyou.org/
If you are interested in learning more about the registry or registering to become a donor: http://marrow.org/Home.aspx

Thank you for reading!


UPDATE: 

Just thought I'd share an update on this little boy Kyle (http://kyleneedsyou.org/) who inspired me to join the Bone Marrow Registry!

Kyle is responding to new medicine and his cells are starting to regenerate on their own and might not need a transplant. This was very unexpected for his family due to the severity of his condition, but there is still a high chance of relapse in the next 2-10 years and he would need a transplant right away if that occurs.

Since his family started the campaign to find a match, over 2,500 people of mixed ethnicity have joined the registry. Not only that, but 2 potential matches have also been identified for Kyle!

If you are interested in registering for the donor list or would like any additional information let me know!

Just sharing some love and thanks before the holidays!

Much Love,
Kat

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