Living the dream, It's a nightmare, but at least I am in it.

Since I had my LVAD surgery last April nearly every day has been great.  I can think of about 3 days total that have been hard.  Two of those were in the first month after surgery.  I think the first one was about 3 days after surgery and I was still in shock, just couldn't talk and share my thoughts.  The next day that was hard was coming home from the hospital.  It sounds crazy but just the fear of not having someone to care for your critical medical needs was frightening at that time.  Last night was another of those days.  Nobody did anything and I didn't plan on it, but it was a long night.  Living with the Thoratec Heartmate II LVAD is so easy, most of the time.  I find it easy to ignore little things like the rubber cords ripping my arm hairs out, or the cord getting snagged on things.  But sometimes it is just too much.  Last night the cord wrapped around my leg 3 different times while sleeping at each time I rolled over the cord ripped hair out of my thigh or shins.  Then I got up to use the rest room and my pillow fell off the bed and onto the cord.  Somehow it stuck to the cord and ended up pulling the PBU off the nightstand and crashing onto the floor in the middle of the night.  I got up to go to the gym at 530 and the pillow that I had thrown off the cord earlier in the night was blocking the door out of the bedroom so when I tried to leave in the dark the door wouldn't open and I crashed into it.  Suffice it to say I was in a raw mood at the gym.

I will forget about this by tomorrow, but I am writing about it because it is too easy to forget about a day like today in the bigger picture of how I feel.  For that reason it is important to capture it and share it because the message is that yes, a great many of your days will be good, but days like today suck!!!  It is a raw and real reminder of what I am going through, and it is hard.  I don't feel sorry for myself, I am just pissed.  People will say my attitude is something that I can control, I need to take responsibility for that.  HOWEVER, in every support group meeting I have been to for both the LVAD and transplant, the therapists and patients are quick to point out that it is ok to FEEL what you feel and when you feel it.  It reminds you to be thankful for the good days.  It reminds of being in the military when my 1SG would say during PT in the morning that,"Pain is good, it means you are alive."  

I have to thank Meech for my post title today. I went to cardiac rehab with him and while he was large and loud, he had something funny to say every day.  Great guy and I wonder where he is and how he is every day!