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Sunday, May 11, 2008

Day +123 Last Word on Donating

Happy Mothers Day everyone! My mom is too exhausted to come over for dinner today, but we will celebrate here anyway with our own homegrown mom, Cathie.

I just wanted to put in one more post regarding becoming a stem cell donor. The procedure really is a slam dunk with no charge until May 19. You register, they send you a tissue typing kit where you swab the inside of your cheek with a Qtip, and you send it in. The cost of doing the DNA analysis, normally $52 to you, is paid for by monetary donations by others during this time (unless you want to donate $ too).

I was lucky to find a DNA match with when I needed a stem cell transplant. In the summer of 2006 I was not so lucky, they only had a partial match. In the summer of 2007 some guy, somewhere, decided to be a stem cell donor volunteer. I owe my life to this person. I frequently wonder what it would feel like to donate some of my extra unneeded cells to save someone's life. I can not be such a donor anymore so I'll never know for sure, but my bet is that I would feel terrific for the person and their family.

For those of you who have followed my story here I hope you have been inspired as much as you have inspired me with your comments and support. I ask you to be inspired in one more way; to become a stem cell donor, to maybe save someone's life one day. Following is my understanding of what happens if you register as a stem cell donor. (NMDP), registers your HLA typing in their database. The test they do identifies only 6 of the 10 major antigens in your DNA that affects graft immune response, ie: the success or failure of a transplant. People with a handful of diseases, including Leukemia, MyeloDysplastic Syndrome, Lymphoma, Aplastic Anemia, etc... have a doctor do a search of the database. The search usually turns up a few to a few dozen donors with the 6/10 matching. Some donors have had the more extensive HLA typing so their complete antigen profile is registered in the NMDP database. It is recognized that there must be at least a 8/10 match to proceed with a stem cell transplant, 10/10 is the best. If a 8/10+ donor is not present in the search results, the 6/10 donors are called in 3 or 4 at a time to get the full HLA typing test. This is done with a very small blood draw at your local hospital. The stem cell recipient's insurance pays for this $500-$700 test, not the donor. If your HLA typing is found to be an appropriate match and the recipient wants to proceed, this is how they get your unneeded stem cells. The doctors will schedule with the NMDP. You will be schedule immediately for a physical where they will get a blood draw to look for additional things that may complicate a stem cell transplant and to make sure you are still in good health. If you pass the health screening all is a 'go'. Approximately 6 days before the recipient is to get your stem cell donation the recipient will start to undergo 'conditioning'. This means they will get total body radiation and/or chemotherapy to knock out their own stem cells. On the same day, you will start going into your doctors office every day for a short visit where the doctor will inject a synthetic human hormone that will cause your bone marrow to start creating lots of stem cells. Normally your bone marrow stem cells get a communication to create 1 of 4 types of cell, based upon current needs; 1. stem cell, 2. Red Blood Cell, 3. White Blood Cell, or 4. Platelet cell. The synthetic hormone that is injected tells your stem cells to divide and create lots of other stem cells. Your bone marrow creates more stem cells than can occupy the bone marrow. The extra stem cells are evicted into the blood stream. After 4 or 5 quick shots over 5 days, your blood is teeming with stem cells! You dont feel any different! On day minus 1 for the recipient, you will visit your hospital and sit in a comfortable recliner. The nurses place an IV in your wrist or arm. They draw blood out of your arm for 3-4 hours while you read a book,magazine or watch TV. There is no pain. The blood is routed through a machine that filters out the stem cells and is returned back into your donors body. There are no side effects, you only lose extra, unneeded stem cells. Some of you may remember the hearing about the old days of 'bone marrow' transplants. Those procedures were much more invasive and entailed the use of big needles on sedated donors. Stem cell transplants today are as described and only slightly more invasive than just giving blood. All costs are borne by the recipients insurance. Your harvested stem cells are transported overnight to the hospital where your stem-cell-free recipient is now feeling like a sack of moldy tomatoes. The next day as the nurses transfuse your cells into the recipient he/she and his/her family cry with joy and relief. This is called Day Zero for the recipient.

Can donors register for the NMDP database and change their mind if selected? Yes. They prefer you don't back out, but there is no contract to prevent you from doing so.

The decision to register as a NMDP stem cell donor is very personal. Please compare the amount of discomfort you may experience (based upon my hopefully accurate description), with the comfort and joy you may experience in saving a life. Please consider becoming a donor. And please communicate to everyone you know about this unique opportunity to register with the NMDP at no cost. Feel free to send them a link to this post to explain the process.


Pallavi said...

Hey Jim! Great to see you the other day. I signed up to receive a kit and to register for being a donor. I also sent the information to my sister (who thought she may have signed up in college, but is going to check again), and a few friends. I hope I am able to give to someone what you received. Thanks again for continuing to share you journey with us.

Anonymous said...

I think this is a great thing and YES I have signed up. Waiting for my kit. I could not pass it up. Someone did this and saved my uncles life... my cousins dad, my aunts husband. I hope that someday I could do the same. Thank you for your inspiration! LOVE YOU LOTS AND LOTS!!

Mike B said...


How could I say no. You are such a great salesman. Your story helps bring the life saving aspect home. In contrast, my fear of needles seems silly. I just registered.

Glad all is going well for you.

Mike B

Anonymous said...

Happy Mother's day to your wife ! and also to your mom!

Great to hear you are doing awesome. It makes me so happy