My wife was diagnosed last Sept. with SAA and she didn't have a sibling match so it was off to do the ATG and Cyclosporine. She has responded, HGB is at 11 (up from 4), HCT at 33 (up from 16) PLT avg about 88 (up from 17). As you all know it is quite the roller coaster ride. It looks though that those numbers are her new "normal".
She received so much blood and platelets while she was going through everything, she was going weekly for both blood and platelets. I really think if she hadn't gone to the Dr. when she did, I would have lost her. One thing I have learned is that she is a fighter. Her first CBC is when the HGB was at 4 and I had to call her at work to go to the hospital! Little did we know what we were in for. Dr's couldn't believe she was actually functioning.
She received treatment at Vanderbilt and that place is amazing!! She takes 500mg of Cyclosporine a day 250mg AM, 250mg PM and tolerates it great. Her Dr. said that once she reaches 100 PLT they will start trying to taper the Cyclosporine and see how she responds.
My question is when do you learn to let go of the fear of a relapse and learn to live your life again? That's where I am, she handles her illness much better than I do and that is a REAL testament to her. But it's like I live from CBC to CBC, I handle all of the insurance stuff, I handle her meds. I do it because I figure she has enough to deal with. This is the only way I know to explain it, she has the illness but I manage it for her. Without the BMT, there is no real cure so I feel like it will ALWAYS linger and I need to learn how to cope with that. Any ideas, LOL!? Any fluctuation in her CBC drives me nuts, the Dr. assures me that numbers fluctuate all the time and I should look at the bigger picture and trends, I know that makes sense but it is so hard to do.
I had to start taking some anxiety pills this week to hopefully help. Anyway, if you have any thoughts or suggestions I am more than happy to listen. I am in my early 30's and this is one of those things that you never expect to happen to you, so cliche but so true! Feel free to email me at
tigerpaul1977@gmail.com , thanks for listening, I think this post in itself was theraputic!