Thursday, January 19, 2012

Clinic Day

Yesterday was clinic day.  I go to the LVAD clinic about every 6-8 weeks.  This usually consists of a blood draw, some time with the VAD coordinator who reviews my device log and care history (daily weight, temperature, and VAD numbers....PI, speed, flow, power), and then some time with the doctor.  Yesterday the transplant coordinator came to visit me and I spent about an hour with her.  We discussed what our response would be if I was called with a heart.  Currently I want to get to the end of April so my FMLA resets and it gets me closer to the summer months.  I explained that to Nancy, the Transplant coordinator, I think she understood.  We talked about the chain of events if I was called.  Specifically who would call me, where I would need to go, how fast I would need to get there, what I could and could not do (stop eating and drinking immediately and no more Warfarin).  In short I need to get ready.  Her advice was to wake up every day and say, "I am getting the call today."  So that means I need to accelerate the signing of our will and living directive, need to organize a fund raiser, set up a call list, set up a communication plan, child care etc.  There is a lot of stuff to do.

I have been sleeping great for many many months since I came home.  Last night I found myself having restless sleep and constant thoughts/fears/dreams about being called for a transplant, arriving and seeing nobody I knew (different doctors and nurses), unable to find my family.  I was so afraid of dying.  I feel week for saying that and honestly am shocked that I had those dreams all night long.  I thought I was further along the process than that.  I find myself wondering what it will be like to have a different heart in me.  I have a very strong sentimental streak in, and I protect things I care about.   I find myself asking am I still me if I have someone else's heart in me?  It makes all the sense in the world and at the same time no sense at all.  I am very conflicted about it.

I am trying to find a calendar tool that will allow me to record my workout activities on my blog.

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