During the weekend of September 10th, me and Susan attended a patient conference in Atlanta. Unlike the last conference we went to in Cleveland, this was for patients who have gone through the stem cell transplant process. It was very informative and we met a lot of people who were 5, 10, even 15+ years post transplant. Surprisingly, also met some people who had gotten a transplant this year. Not sure if I could have traveled to a conference several months after a transplant! Some of the interesting things we heard are about the better success rates for people doing transplants without a perfect match. Also, there are some new clinical trials coming out with data suggesting that doing a Bone Marrow transplant in long run has less complications than stem cell transplant. The difference in two procedures is one takes bone marrow from donor and uses that as source of transplant, and the other just takes stem cells from a donor. Obviously, extracting bone marrow from donor is a much more invasive procedure (I had stem cell transplant, not bone marrow). Overall it was a very positive experience although I think I am done with 10 hour car trips for the time being 😉
Our hotel was a few blocks from Centennial Olympic Park, which was a gathering spot for 1996 Olympics (and site of bombing). We just had enough time to walk through park, but was disappointed that the fountains were closed for maintenance 😦 We just didn’t have much time for site seeing which was too bad as Atlanta looks like a nice place to visit. Was surprised how almost everything is new there, not many old buildings…at least not where we were staying. But they do have big highways!
On September 23, I had my latest doctor visit which also included a Bone Marrow Biopsy. The biopsy will be the last one for at least a year, and it’s possible I may not ever have another if blood counts do not show anything that warrants one. All the previous post-transplant biopsies have been good and not expecting anything abnormal from this latest one. Should get full results within a couple weeks.
My blood counts show liver GVHD is under control and my liver counts are almost back to normal. So we again reduced my Prednisone steroid to 5mg every other day (from 5mg everyday) and adjusted insulin. I may soon go to oral medication to control “temporary” diabetes until I am completely off steroids, which hopefully will return my blood sugar to normal without the need to take insulin or medication. In the meantime, still dealing with fatigue issues which come and go, sensitivity to sunlight, and occasional swelling in legs.
It’s been almost one year since transplant and in some ways it seems like it has all been a blur. Compared to other patients, I really have not had that many complications and my health care team would probably say I have gone through a “normal” recovery process. It will be nice to reach a point where the first question from people will no longer be “So, how are you feeling?” !
For more photos, check out: http://www.flickr.com/photos/saint_louis_jim/