As I started exploring the details of the stem cell transplant, the first couple decisions were “where to have the procedure” and “the best option for donor stem cells”.
The decision on which hospital came down to a few key considerations: being home or away, the statistics on outcomes for each hospital, and the transplant process used. MD Anderson does a large number of transplants, has top ranked outcomes, and the team there very quickly earned my confidence. I had already trusted Dr. Thompson at MDA as my CLL specialist and he works very closely with my transplant doctor Dr. Shpall. The combination gave me confidence that I’ll be in good hands.
The type of transplant is called Allogenic, meaning from a donor. My disease would not allow for an Autologous transplant (from my own cells). After testing my amazing siblings Julie and Dan for a match, they both tested as 1/2 match. Each child gets 1/2 of the matching antigens from each of their parents, so there was just a 1 in 4 chance that Julie or Dan would be a perfect match. The same is true for my kids Tara and Eric, they would by definition be a 1/2 match.
I decided to pursue a MUD or Matched Unrelated Donor to learn more and see what donor options were available. I’ll never forget Dr. Shpall inquisitively looking at me from different angles, specifically my facial features and concluding “we will find you a good donor match”. She could predict based upon my features that the donor bank would come up with a perfect match! The HBO show Westworld came to mind - astonishing but a bit too real and creepy.
This is when I was introduced to an incredible organization called BeTheMatch (https://bethematch.org/). A preliminary search found 14 potential perfect matches. At this point, they were "potential" since a donor enters the donor bank with a simple saliva sample, perhaps at a concert, sporting event or other collection location. It’s not until the match is confirmed with a blood test that it is confirmed match. I remember the emotions this news brought, that a perfect match was a real possibility. In regards to selecting the best match, my doctor preferred “big, young males since they have lots of cells and are less likely to have developed diseases or other complications”. For all of my young (under 40 is the preferred age) friends and family out there, can you imagine a more rewarding way to help another human than being a donor? Check out and consider joining Be The Match.
So, after the blood test confirmation and a series of other tests, Dr. Shpall selected a healthy, 28 year old male from somewhere in the US as my donor. He is not only a perfect 10/10 match for the human leukocyte antigens, but he also has 4 additional prognostic markers and my same O+ blood type. My hero, brother from another mother, and an amazing person that would make this sacrifice! Other than a simple thank you note, I’m not allowed to meet or even interact with him until 1 year post-transplant, but already envisioning that day in the future Thanking him for literally saving my life is a heady feeling!
I’m incredibly fortunate to have a perfect match donor.
Gary
Extremely interesting Gary. Hang tough! We know you're going to get through this.
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