Sometime Tuesday or Wednesday of this week, the ATGAM medication had been approved, meaning that I’ll be admitted very soon to the hospital. I’m assuming I’m waiting for a bed to be opened for me at the hospital, although, the communication from my hematologist‘s office is still leaving something to be desired.
I’m not a person that likes to be idle, and now after all this waiting, I’ve had some time to think, and do some research. When I had the first round of ATGAM in 2005, I was told that the success rate if I had to go through it a second time was lower. I can’t provide numbers or statistics, but this is something Iremember from the talk with the hematologist we had at the time prior to the 2005 treatment.
Now I’m older, and my bone marrow is failing again, the biggest concern I have is going through the ATGAM treatment, feeling shitty for the next 4-6 months, and finding out it was a failure. I’m slowly leaning towards just going through with a Bone Marrow Transplant (BMT). This is something I know I need to talk with my hematologist about, although I would really like to avoid this route.
I’ve had an opportunity to find a Facebook Group called Aplastic Anemia Awareness, which is a small group which is open to people that have children, spouses, friends, survivors and those that have just been diagnosed. Reading the stories and experiences from others around the world, is making me rethink the ATGAM and just going full out towards a BMT. As opposed to people that have gone through several ATGAM treatments, and just ending up a few months or years later (as in my case) back to where they started. It appears that those that have gone through BMT seem to make full or partial recoveries.
March 23, 2012 – Today, Ken received a new blood system, new life, from a stranger who graciously donated bone marrow.
I have also found a Facebook Page called My New Birthday which details day to day life of Ken. After his first treatment for Aplastic Anemia failed, Ken elected to undergo a Bone Marrow Transplant in hopes for a cure. Through his Facebook page, Ken has shared all the trials and tribulations of going through a bone marrow transplant. Ken is alot like me in that he is experiancing the frustration of feeling great one day and miserable the next, although unlike me, he has been brave enough to go through the BMT.
I suppose the frustration lies from the fact that I have been waiting so long, and for the past year have been feeling really crappy. It’s nice that something is finally being done, but I don’t want to end back up in the emergency ward for something to get the ball rolling. I’m doing my best to keep my spirits up, but once again, sitting around and waiting is horrible for anyone that has a chronic illness, and battling depression, sadness, and a little anger gets really tiring.
I’m crossing my fingers that tomorrow I’ll get a call to be admitted to the hospital, and finally get the ATGAM over and done with.