My Life at 9200 rpm's: LVAD/Heart Transplant Support Group Sitrep

     Once a month about 20 people meet at Sanford Clinic in Fargo to support each other as LVADs and heart transplant recipients.  That statement is quite sterile for our earthy group. 

     We are brothers and sisters based on our shared experience. Having an LVAD has its challenges. We talk about our common experiences, sharing our confidence and concern for each other. We can trust the information we exchange.  That's what support groups do.

   About 10 of us have LVADs, all HeartMate II's; three have received hearts, and the rest are caregivers or those with a connection to the group.  

     One of the questions we aired with two Sanford staff that attended  was aimed at ensuring LVADs have a better chance of survival during a medical emergency requiring action locally in Fargo.  To their credit, they took notes.  I'm confident something positive will come of the discussion.

     For me, the bottom line is that Sanford does not have even one pair of the specialized, 14 volt lithium ion batteries that all LVADs use to power their pumps during waking hours.  The sense of the group was that the situation should be assessed by the powers that be and hopefully rectified. Stay tuned.

     Having a pair of batteries would mean acquiring a charging device.  The batteries come in boxes of four with two boxes of batteries, eight in all, for each LVAD. 

    Sanford has undertaken to provide care for 10 or 12 LVADs locally so that we don't all have to travel to the University of Minnesota for every cardiology appointment.  The U of MN agrees with the approach.  Fargo is 3 1/2 hours from Minneapolis.

     Co-operative care, called Shared Care, is a great idea.  Right now I see a medical professional concerning my LVAD status every month and a half: alternating Fargo and Minneapolis.   The U of MN implants LVADs.  Sanford, I'm told, hopes to be an LVAD center in the next few years.

    The problem is that full support of us as LVADs would mean that all of the equipment we routinely use should be available in the ER.  The expense of having functioning battery sets, the battery charger, a power module, display module likely would cost umpteen thousands of dollars.  

     Nothing Thoratec, Inc., manufactures is inexpensive.  The equipment is unique to the HeartMate II.  You cannot simply get replacement batteries at the local battery store. The sophisticated battery charger is specifically for to HeartMate II batteries.

   The LVAD itself is in the neighborhood of $75,000.  Installation, of course, is extra.  Not a cheap undertaking.  For all the gear that goes along with keeping LVADs functioning, the price tag is off the charts.  Just thinking about it makes me doubly aware of how fortunate I am and we LVADs all are.

     Despite its cost our treatment to date to relieve congestive heart failure has kept us LVADs alive and thriving.  Worldwide, some 10,000 HeartMate II's have been implanted over the last five years. The dollar investment is vast.  What's the price of life?