Four months after transplant and things are going well

Life changed for me last June 8th.  I received a new heart from a selfless donor, and for that I am humbled and forever grateful.

After 38 months plus with a left ventricular assist device keeping me bionically alive, I'm able to live without mechanical support.  The things we take for granted amaze me.

Driving home to Fargo from Minneapolis, I became aware of how many shades of green there are.  I had a different outlook.  No longer were the fields and woodsy areas just fields and woods.  

Perspective and attitude are changeable, if you want them to be.  You're only limited by your imagination.  If you can dream it, you can achieve it.

There have been (and likely will continue to be) rough patches particularly in negotiating the balancing of the medications that keep my body from attacking and rejecting my new heart.  I accept the challenge and am moving on.  Acceptance is the key.  Sometimes you get stuck on something.  There are bad days but fortunately there are many more good days.

I began cardiac rehabilitation last week and feel much better for the exercise.  It has taken these several months since receiving my new heart to feel well enough to launch into an exercise program.  It is relatively slow going and controlled.

I learned the other day that the pneumonia I had may have come from a fungus carried in the cells of the donor heart.  Fortunately, I'm being treated for the fungal condition and the cardio team says it will be resolved favorably.

Don't forget to check out becoming an organ and tissue donor.  Go to www.organdonor.gov

Five months after transplant: situation report

Returned home from my regularly scheduled Minneapolis clinic appointment and lab tests. All went well. I was relieved of having to wear a hospital procedure mask as it's been almost five months since transplant. 

An organ recipient's immune system is suppressed significantly to allow the new organ to survive in a body that only knows it is dealing with a foreign invader.  If only the immune system could communicate and use reason, right?

Meanwhile, a friend with an LVAD has developed a driveline infection, for which he is being treated with a course of anti-biotics.  His transplant team has listed him as 1-A and will be preparing him to receive a heart transplant using chemo therapy to reduce anti-bodies in his system. He's been on the list for a couple of years. 

Once his driveline infection is stabilized (not cured) he will likely continue on anti-biotics and undergo the chemo therapy as a hospital patient until a suitable donor heart is found. 

All LVADs acquire anti-bodies because of the pump.  This can make a donor-donee match harder because tissue samples need to be taken from the donor heart to make the match work. It lengthens the process and could result in not being able to find a suitable donor heart, depending on a series of other factors like blood type.

But once a driveline infection erupts, things go mostly downhill.  The rate of decline for a HeartMate II owner varies but the infection can only be stopped by either a new LVAD or a transplant operation. 

My LVAD showed signs of clotting and I acquired a driveline infection last fall. The clotting symptoms occurred at about the 30 month mark after implant.  The clotting occurred at about the 36th month mark after implant.

I was told that I might need a new pump.  But the transplant team at the U of Minnesota took a more conservative approach because of the danger of anti-body build up with the blood transfusions that usually accompany the implant of a second LVAD. I got no replacement pump and no transfusions, but that led to receiving a new heart.

The doctors got me stable in late May and I returned home.  A few days passed and on June 8, I got the call that a suitable donor heart had been found.

Meanwhile, I'm living each day as fully as I can.  Energy level is increasing day by day.  Strength is returning as well.  I hear the strains of the theme from the John Travolta movie bouncing around in my head "Stayin' Alive."