Sarah,
Congratulations on your five-year milestone!
Thanks for sharing your story in this way. It offers encouragement to people who are just starting a journey like the one you've had.
Your hematologist's comment that "You're alive, but you're not really living" struck me because it applies to so many who are facing treatment decisions that seem like "no win" choices. Whether or not to take a chance on a riskier treatment that could lead to a cure sometimes comes down to quality of life questions.
Dr. Young at the National Institutes of Health is one of the foremost authorities, if not THE foremost authority, on aplastic anemia in the U.S. You were definitely fortunate to receive care there.
You mentioned that they found a mutation in your cells after your ATG treatment. That's also what happened to my wife. At the time, we thought that meant that her AA was transitioning to a different bone marrow failure disease (MDS), explaining why ATG wasn't fully effective. In hindsight, we think she had MDS all along, and that it just hadn't manifested in her tests. But once you choose to go to transplant, as we did, it hardly matters which disease it is, because your bone marrow will be replaced.
It was wonderful of your parents to stay so close and supportive, and your donor sounds especially wonderful. You had a great team!
I hope people heed your message about joining the bone marrow registry. That simple gesture could save someone's life.
__________________
Founder of Marrowforums and caregiver for my wife
Last edited by Neil Cuadra : Sat Mar 26, 2022 at 08:51 AM.
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