The wait definitely takes on its own life. Sort of like I virus that grows out of control. My math says that I have between 77-80days of 1A time now. I had 30 days of 1A last summer from July 1-Aug 1, and have been on 1A since September 27 as a result of my driveline infection and antibiotics. I also think I had 3 days of 1A when I was first hospitalized. Right now my restrictions are no running, swimming, showering, working out, less than 2mg salt per day, no drinking, traveling. So.....I pretty much can't do anything. I am hopeful right now that this will change at some point in the very future. 90 days is the magic number, I have been told that is the average wait time on 1A. I am expecting to be told in clinic on Wednesday that I need to start chemo to lower my antibody profile. I have high antibodies and consequently I can accept a dramatically smaller population of hearts. Lowering my antibodies would have the opposite effect in that I could accept a much greater percentage of hearts. More potential donor hearts means less wait time. Once chemo starts I have more restrictions, if possible. The doc's are quick to remind me that while the chemo is relatively light it is not anything that is ever really considered good. So I am expecting to feel pretty crummy.
I am so thankful for my Thoratec Heartmate II, but I am SO ready done with this device. I feel like every aspect of my life is on hold. I need more Caribou coffee and to see my Eagle every day, reminding me that I can fly again after this is done.
Chemo to lower antibodies? That's a new one for me... bless your heart! When would they start that? Good luck, whenever it is!
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