My LVAD life at 9200rpms: LVAD support group situation report (SITREP)

    Since September, 2010, I have been attending monthly gatherings in Fargo of those who have LVADs and some who have had heart transplants.  For those seeking an LVAD, know that if the implant is successful and you get to go home, the sailing will not necessarily be smooth.  

     For some of us, it takes months to feel relatively normal.  Regular exercise and healthy diet help.  Attitude is key.

     Fortunately for me, my LVAD and body are compatible or as one of the Mayo Clinic cardiologists said, "you tolerate the pump well."  Heck of an endorsement, right?  I've talked about this before but strokes and drive line infections kill LVAD owners more than any other complication.

     The LVAD support band brothers and sisters at Sanford is a mixed group by education, age, and work history.  What we all have in common is an appreciation of life, what we've overcome, and a sense of gratefulness of each day.   

     In early 2010, the FDA approved Thoratec's HeartMate II for both destination therapy and transitional or bridge to transplant therapy for end stage (read ready to die) congestive heart failure patients. No other LVAD maker can make that claim. 

     Even though I've had mine since April 2, 2010, I am under no illusions about their capabilities.  Heart pumps are not fool proof. While no maintenance is required,  they are machines and can fail. 

     An LVADs meds need to be monitored closely.  The meds generally are to control blood pressure, and heart rate, and to try to ensure that an LVADs blood supply has a slower clotting rate than normal.  The pump cuts up red blood cells, technically called hemolysis, which can lead to anemia.

     Strokes and dizzy spells were discussed at the most recent meeting.  As I understand it, blood pressure for LVADs is maintained lower than it is for healthy hearted people to ease the ability of the heart pump to do its work.  When a person's blood pressure is kept low, standing suddenly can cause dizziness or fainting.

     Several of the dozen LVADs have experienced dizziness and fainting.  One participant who has had a heart transplant approaching eight years, said simply that he has purposely made himself get up more slowly.  Makes sense.  Who remembers to rise slowly every time.  Events happen.

    Another group member has experienced his second stroke as an LVAD.  It hospitalized him for some time.  He reported that his doctors at the University of Minnesota attributed the stroke to hi LVAD breaking down or cutting up red blood cells.  The cells collect and cause a clotting effect.  I'm not a physician or an engineer, but the explanation seems valid.  

     So the question becomes How does an LVAD owner guard against a stroke?  There is no simple answer, I'm told.  Pump speed can be reduced.  Mine is set at 9200 rpm's as the top end based on Mayo Clinic's experience that higher pump speeds cut up more red blood cells. Conversely too low a pump speed can lead to clotting and other serious even fatal incidents.  But without the pump, I and other LVADs would be only a memory to our families.

    Drinking fluids,  staying hydrated, is also critical. The Camelbak company that supplies water reservoirs you carry with you had a slogan that is more true for LVADs than thirsty hikers:  Hydrate or Die.

    Maintaining an INR (International Normalized Ratio) within the range prescribed for LVADS is another factor.  A normal person's INR is about 1.0.  My INR range is 2.0 to 2.5. My friend's must be maintained above 3.0. These elevated INR levels help keep our pumps from having fatal clots.  

    I have a home monitoring kit with which I test my INR once a week and report the results to the Sanford Anti-Coagulation Clinic and the kit's manufacturer.

    In many ways, LVADs are pioneers.  We are the few in daily experimental mode.  Over 10,000 HeartMate II pumps have been implanted world wide.  I don't think about being a pioneer.  It's enough to be here in 2012.  If my LVAD gets me to the point where I get the gift of a heart, that will be a good thing.  Meanwhile, I'm good.  Never quit.