Today in my email was a link to a story about a gentlemen from my hometown who has twice been transplanted. I met him last Christmas and we talked on the phone several times. It reminded me that Thursday was the day we planned to start my 30 days of 1A time. As things sit right now, we are not going to take the 1A time. Last Monday I had pulmonary flow tests (PFTs), a right heart catheterization, and the vampire came to see me. My tests all look very good and in light of how well I have done this past year my doctors think I am a good candidate to wait another year before starting the transplant process. For every year this LVAD lasts me it adds another year to my life (as a reminder the mean survival for heart transplant is roughly 15 years) and delays the immunosuppressive therapy that I want to avoid. That is the crap that will kill me in the long run. Awesome that I have earned the right and the faith of my doctors to participate in making this decision. As I have learned, this process is like choosing something to watch on cable.....the fewer choices you have the easier it is to chose. In this case the more options you have the harder it is to make a choice. There is NO book out there to make this decision and anything that I factor into the process ultimately feels hedonistic compared to my health. Do I want to move or do I need to move? Do I want to accept the promotion for work or do I need to take it? The only way to take the wants out of the equation, or so it seems to me, is to put my family first. Doing so tells me that choosing to stay on the LVAD another year, rather than "electing" to be transplanted, is the best decision based on something that really matters, my family. The wait takes on a life of its own and it is hard on everyone around me, even when we don't talk about it.
I have had many people reach out to me the past few days for an update on what we are going to do. People I haven't heard from in a long time, people I didn't even know knew. I can't tell you have much that means to me that people care. All I can say is thank you for the thoughts and prayers. And thank you for reaching out! It has been great to reconnect.
On a much more fun note, we went to see Van Halen on Saturday night, sat front row, center stage. Amazing. See a couple of pictures, one of which shows me and the LVAD. To quote the security person when we entered the arena, "What the hell is that, and can I touch it without killing you?" Lol, suffice it to say security was easy.
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