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Saturday, April 26, 2014

Everything in moderation

Things took a turn this week.  I had a right heart catheterization on Tuesday.  Everything looked good, except for being a bit dehydrated.  However the doctors discovered some speed drops on my pump and took a chest x-ray.  The x-ray showed a suspicious spot on my drive-line and had additional x-rays taken.  The conclusion is that I have a fractured drive-line.  The protective covering on the drive-line an the interior parts have pulled back from the pump in my chest leaving the wires exposed and causing my pump to occasionally slow down.  The risk of this is that the pump could stop completely and kill me.  My doctor called me on Thursday night and told me to pack my crap and get to the hospital in the morning, we are done screwing around with you.  I was admitted to the hospital on Friday morning and advised that I won't be leaving until I get a new heart.

Since yesterday morning I have had the usual battery of tests and visits from the team.  I am in the ICU where I am 1) the youngest patient by 25 years and 2) the only one walking.  There is a lot going through my mind at this point.  Knowing that I cant even leave my room lest I collapse, as my doctors fear.  This has been shocking for family and friends to deal with.  I think the same for the clinical team as well.  Nobody is quite sure where the fracture came from, though the likely culprit is three plus years of very high activity.  I have heard that this problem has been fixed in newer pumps, but it doesn't really help me.  The options I am facing are 1) replace my pump immediately and recuperate and wait at home, 2) be transplanted ASAP (dependent on organ availability), or 3) remain hospitalized and wait for a heart.

The team at the hospital has been awesome and left me alone for the most part.  I had a PICC line put in yesterday, and while uncomfortable it makes things much easier for drawing blood and administering meds if needed.

Should anyone be considering a LVAD I hope that my story does not discourage you from getting this device. I highly highly recommend this therapy; this is merely a speed bump on the way to my new life.