Well, I am home from my first week in hell. To say I am exhausted would be a gross understatement. I underwent so many tests I cannot even remember them all. I do know there was lots of poking involved and that just sucks. We have run into a small obstacle.
What they were able to find out is that I am considebrably sicker than they thought I was. After everything, we have determined I have a longer journey than expected.
I go to committee on Thursday. This means all the people who saw, and talked to, and poked me, will get together with the folks who decide whether or not I can go on the list. Chances are I will be rejected. I know, right. After everything I have been through. How can they do this to me?
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At first I was horrified, but they explained that my pressures are too high and right now they could not put a heart in because my body would just ruin it again. I had no idea I was that sick. Too sick. So I will wait to find out if and when they will put in the LVAD. Once I get that, we will work to get my pressures down and then when they are down, I will go before the committee again to get approved.
It may be as soon as before the end of the year that the device goes in, but they assure me I will feel better once I have it. I met a couple folks who have the LVADs and I am not as freaked out as I was in the beginning. I am determined not to waste a heart.
It was weird, yesterday they doctor was talking to me about my condition and everything, and he touched on me being a writer and a publisher and he suggested I consider writing a book about my journey. He says that so many others could benefit from my experiences, the highs and lows, and everything.
Any thoughts on my doing this? I am by no means the only one going through this, but he says, not everyone can write it. I’d really like to know what you guys think. Ya’ll are my support system, even if we have never met. I rely on your positive notes and so forth, because I am sure as hell having a hard finding them on my own.