My Life at 9200 rpm's: An LVAD Warrior on the front lines

When I waved in the rear view mirror at St. Marys Hospital of Mayo Clinic in May, 2010, I knew that my life link to medical information for survival would come from my LVAD Coordinator.    

At the time, Mayo did not assign a particular coordinator to a particular patient. It was a potluck situation:  you got the coordinator on duty.  When I transferred my care to the University of Minnesota Hospital, I was assigned a specific coordinator.  I like the U of M system because it builds a relationship, a bond, based on trust.  

I don't dislike the Mayo method which treats coordinators and patients as interchangeable.  But at the U of M, I don't feel like a number.

Coordinators are universally well trained, experienced registered nurses. Their level of dedication is beyond passionate. They work closely with LVAD teams of surgeons, cardiologists, other health care professionals and are the conduit through which LVAD patients receive vital information and referrals to specialists.  They are like a football quarterback, who takes the whole picture into account before calling a play and carrying it out.

My friend and fellow LVAD recipient, Kristi Mardis, has obtained the ideal job: an assistant LVAD coordinator for her LVAD implantation center and hospital, Baptist Health in Little Rock, Arkansas.  The hospital is fortunate to have her.

She has the hands on knowledge and experience with her HeartMate II, LVAD, that is unavailable from any other source.

A recent article about her decade long heart failure journey is available at http://www.imperialvalleynews.com/index.php/news/health/3048-lifesaving-technology-provides-promise-for-heart-failure-patients.html

My LVAD Life at 9200 rpm's: A heart, a heart, my kingdom for a heart

Shakespeare quoted King Richard III, the last Plantagenet English monarch, as shouting during a fatal battle some 500 years ago:  "A horse, a horse, my kingdom for a horse."

My paraphrase of the quote just popped into mind.

Richard, a reputed blackguard, was in his final battle against Richmond/Henry VII and Richard III found himself without a horse to continue the fight. Hence, his shout for a horse.  The demand went unanswered and Richmond/Henry VII killed the king in a battle on Bosworth Field in 1485. 

Richard was the last king of England to be killed in battle. That battle ended the War of the Roses.

In thinking about this narrative, unlike Richard III, I am clearly not in a demanding mode at all.  Also clearly I have no kingdom to offer in exchange for a horse/heart.  The point of the use of Shakespeare's Richard III quote was to call attention to the recent story of the archaeological discovery of the skeleton of Richard III.  

His bones were found under a parking lot in Leicester England, northwest of London.  Originally Richard III was buried in the floor of the cathedral at Greyfriars in Leicester.  The successor king was a Tudor.  The Tudors wrote the history of Richard III and other Plantagenets, casting him and others as evil and underhanded.  It was the Tudors who hanged his corpse on public display and permitted hacking at the body.

The successor Henry VII, and his followers were in charge of Richard III's burial.  The body was found in an unmarked grave. There was no evidence found of a coffin or shroud, and the naked body was put in the ground in a grave that was too short for the king, who as about 5'8" tall.  It took modern science to sort out his identity.

The story of the archaeological find gets complicated because the Leicester Greyfriars cathedral, home of a Franciscan order of Catholic monks, was destroyed during the Dissolution of Monasteries in the middle 1500's, when England's state religion became Anglican and Catholicism was banned.  Eventually, the site of the razed cathedral became a parking lot. Who knew?

The skeleton of a male was uncovered at the Greyfriars cathedral site last September and its DNA was tested.  Earlier this month, the lead archaeologist from the University of Leicester announced that the results of the DNA testing confirms that the skeleton remains are likely Richard III, beyond a reasonable doubt. 

Conclusive tests are pending, but the king's scoliosis (curvature of his spine) and various "humiliation" wounds (sword slashes to the face, an axe wound in the head, and a stab wound in the buttocks, for example) on the skeleton match accounts of Richard III's demise. The remains are scheduled to be reburied in Leicester cathedral. The Times of London suggested that the remains be buried in Westminster Abbey, the rightful final resting place for British monarchs.

Meanwhile, my LVAD is performing as designed.  The machine allows me to wait for a new heart.  With the HeartMate II LVAD, I have no signs of my end stage congestive heart failure: shortness of breath, easy fatigue, wheezing and assorted other deficiencies.

I continue as a listed candidate for a heart transplant at the University of Minnesota Hospital. 

Because of an infection at the driveline site, which is treated as a wound and dressed daily under sterile conditions, that I continue to   fight, I have not been able to exercise since last December 5.  Any additional abdominal movement, such as that during the use of a treadmill, elliptical machine, or recumbent bike, caused the fragile wound site to bleed and weep.

But in the last week, the site has sealed to the point that I've begun to use a treadmill at home. I'm not breaking any speed or endurance records and find it very tiring.  It is amazing the diminished conditioning level you experience, when you aren't exercising regularly. 

Another issue has been the level of anticoagulant medicine I need to keep a constant INR. The medicine most LVADs take to keep their blood from clotting easily and clogging the pump is affected by exercise, diet, and the antibiotics I'm taking.  If the INR is too low, clotting can occur. If it is too high, a bump to the head could produce fatal results. 

The journey continues.  I am among the most fortunate, and a beneficiary of modern science and technology. The alternative could have been burial, whether under a parking lot or not, is immaterial.