Popular Posts

Popular Posts

Saturday, July 27, 2013

Breaking Radio Silence: I have a new heart

Another chapter closed and the journey continues.  LVAD to new heart. It has been a journey, and the journey continues.

I donated all of my batteries, controllers, battery clips and all of the other LVAD equipment to the University of Minnesota LVAD program.  I do not need them anymore and hope my LVAD coordinator will find a good use for them. 

I have a new heart as of June 8, 2013.

My LVAD, a HeartMate II, stood me in good stead for 38 months and six days. The call for a heart transplant came from a U of M transplant coordinator on Saturday, June 8, before noon with instructions to be at the local airport in 30 minutes for an air ambulance ride to Minneapolis.  All I said was "Aye, Aye" and packed my LVAD gear as a backup plan. This could be another dry run and I'd need my gear to survive. It happened once before. 

The transplant didn't go too smoothly.  The new heart was in shock and acute rejection was suspected. The surgeon closed me up (of course I had to be told about all this since I have no recollection) and sedated me.  I couldn't breathe on my own so I remained sedated for 8 1/2 days. I'm told the new heart perked up about day 3 of the induced coma and has been doing fine since then.  

When the Rip Van Winkle-like sleep/fog began to lift, I immediately looked for my controller, the brains of the HeartMate II LVAD system, and couldn't find it.  I carried it 24/7 on my waist for 38 months plus.  How, I asked myself, am I living without my controller? It quickly became apparent that I had no need for a controller.  Freedom from being bionic. Waterproof again.  Fly fishing on the horizon. Not being waterproof with my trusty LVAD 
kept me in landlubber status for several years, since April 2, 2010 when it was implanted.

But after that long a period of intubation I had nothing left. I couldn't stand or walk, muscle tone was gone.  I had to learn to swallow again. Because of the large dosages of anti-rejection drugs, I couldn't sleep for three days, and still sleep fitfully. Once the meds are regulated, I'm told sleeping will  not be so difficult.

Now I can use light (2#) dumbbells to increase upper body endurance and the treadmill for 20 minutes.  Big improvement. Balance is returning.  But lack of a vegas nerve, which helps control heart rate, takes some adjustment.  I cannot just get up and get going but have to go slowly. Fainting is the problem because the new heart takes time to catch up with activity level.

So here I am in Minneapolis with an entirely different set of medications, anti-rejection meds, and a steroid among many others.

I was absolutely dependent on my HeartMate II, so it is not surprising that I looked for my waist carried controller several times in the first days I was conscious and could not believe I was alive without it.  The mind can play tricks. But I'm here and this post is not battery powered, for which I am forever grateful to my donor, my family, and my supporters. As an LVAD says, "the good saga continues."