BMT for AA... twice.

[Crossjw]

I first became a survivor at 15 years old. I returned from a summer full of camps and activities to cross country practice before my junior year. In the past, while I was never the best, I wasn't a bad runner. This year my energy was completely gone and after less than a mile and after the entire team, girls and boys, had passed me and I just couldn't keep up. To make a long story short, my mother was instructed by the coach to take me to the Dr. to make sure I wasn't sick. And sure enough, I was sent immediately to Johns Hopkins Oncology to find out, first and for an hour, that I had cancer. After that hour I was then informed that I did not have cancer, that was a technical error, but instead had very severe aplastic anemia.
My doctor immediately admitted me and began testing my family for a bone marrow match. Lucky for me, my younger brother, who was 12 at the time, was a perfect 12/12 match and we proceeded with a BMT. After only 64 days I was considered cured and I went back to my normal life. I was able to go to the prom, have a girlfriend, graduate high school on time. My life was normal again.
Since my BMT in '03 I have lived a very normal life. In fact, I forgot that I was ever really sick. That was, until July of '09. I was a month out of college, 2 months into my marriage, and about to start my new job when I received the shock of my life. I had begun bruising. I was feeling extreme fatigue. My acne had completely cleared. My skin began tinting green. I immediately had my blood work done and was rushed again to Johns Hopkins. But that wasn't the only shock. The day we got my second diagnosis, my wife also received her own "diagnosis". She was pregnant.
My AA was supposed to be cured. But 6 years to the day, my body had rejected by brother's marrow. My ANC currently is about 800, my platelets are about 5k, my reds are also extremely low. I've been receiving 3 units of red, 2 units of platelets every week and a neulasta injection every month for the past year. I am also on cyclosporine with no results. The next BMT will occur when I see it necessary.
At the AAMDS conference we saw research on the mutation of the telomeres. At my next appointment we are going to have my donor's telomeres looked at to determine if we can reuse my brother has a donor or need to find a new unrelated donor. I know that what is going on with me is rare. I hope to make it to NIH in the near future to meet with Dr. Neal Young to discuss his thoughts on my current treatment.

[Ruth Cuadra]

Crossjw,

Thank you for sharing your story. You're right when you say that it's a very rare one. Young people can usually expect a successful transplant for aplastic anemia, especially with a matched sibling donor. I can barely imagine the shock of your relapse after 6 years.

I hope that Dr. Young's research on the relationship between shortened telomeres and aplastic anemia will shine a light on the direction you should go. This development was barely on the horizon at last year's conference and now seems like it holds great promise. Let us know how we might help you and please update us after you've seen Dr. Young.

Congratulations to you and your wife. We look forward to the news of birth of your child!

Regards,
Ruth

[squirrellypoo]

Wow, thanks for sharing your story. I've never heard of anyone having two transplants after such a long time, and I suppose it teaches us that we should never take our good health for granted. Congratulations on your becoming a father soon, it should be a great goal to focus on and something to really fight for.

Best of luck and I hope to hear more from you on here soon.