The tale of a fungus and other recent developments

Seven months since transplant: just returned from labs and testing for four days.

Two months after transplant, I developed pneumonia and was hospitalized to allow the U of MN cardio team to try to track down the cause.  I learned that there are a myriad varieties of pneumonia and, with a suppressed immune system, any one of those varieties can potentially do you in. Pneumonia impacts lung function.

Fortunately, the infectious disease specialists ran exhaustive tests and, based on their training and experience, determined that the culprit was likely a fungus. They could not say for certain what the fungus was but I learned later that the docs were correct. 

I was prescribed Voriconazole or VFend. Using that drug requires adjustments in the other immune suppressing drugs. VFend seems to magnify the potency of the two main drugs I take to keep my new heart from being rejected by my body.

The VFend began in late August and concluded last Friday.  Meanwhile, in October, I received word from the cardio team that the heart I received had a fungus infection, which caused my bout of pneumonia.  I didn't ask, 'how could this be?'  Instead, I accepted the problem and went on with the cure.

A CAT scan last week showed that the fungus nodule in my left lung was gone. The VFend could be discontinued and it was as of last Friday. Yippee Ki Yay and adios fungus.

One of the side effects of VFend is fluid retention in the extremities.   For me, that meant significantly swollen feet, ankles, calves and knees. There was no pain associated with the edema but it was uncomfortable and necessitated wrapping my lower legs with ACE bandages, and wearing compression stockings. Although the VFend was discontinued, I still have the swelling.  It is lessening day by day. A small price to pay for another chance at life.

Another issue I've been dealing with is steroid induced diabetes.  The Prednisone I take as part of the anti-rejection regimen of meds, can cause high blood sugar.  

That necessitates blood glucose  monitoring and the self-administration of insulin. Last week I met with an endocrinologist in Fargo.  He was reassuring that the high glucose levels would return to normal once Prednisone was discontinued.

Meanwhile, for U of MN heart transplant #788, the beat goes on.

Just passing through: seven months since transplant

January 8 came and went as night follows day. It was a routine Wednesday for most. For me it was another benchmark for a relatively newly transplanted heart patient. 

I'm now seven months down range from my heart transplant and feeling better daily. For example, climbing stairs was slow and strenuous for many weeks.  Resting on a landing was routine.

Cardiac rehab is having a progressively good effect, it seems. Stairs are not as big a problem as they were just weeks ago. 

There are no guarantees in life as everyone knows. There are fewer donor hearts available each year and this is the year when more LVAD operations will be performed than heart transplants, roughly 2,300 LVADs versus about 2,200 donor hearts.

A friend of mine with an LVAD has been listed for a heart transplant at Abbott Northwestern Hospital in Minneapolis.  He's been on the 1-A list for over 100 days.  1-A status is the highest priority for a candidate for a new heart. 

His job requires him to travel but his doctor nixed travel plans for next week, saying he needed to be close by because a heart is around the corner.

The friend's dad made the pair unique because he was just implanted with a HeartMate II.  The pump gives the recipient a second chance to live.  So until the son is transplanted, the pair are the only father and son LVAD owners. Here's a link to his blog http://waitingforanewheart.blogspot.com

The significance is clear to me:  LVADs can help young and old alike.  As few as 10 years ago, none of us--the father and son or me--would be here for long, once congestive heart failure reared its head.  The LVAD has made all the difference, allowing me and my friend to await a suitable donor and having a good quality of life during the wait.

A New Year's Resolution: determination is good

About four years ago, I was basically a goner.  Of course, the sick person is the last to know.  Congestive heart failure can sneak up on you. I had no family medical history except anecdotally.

The signs, though, are clear. Breathing, walking, talking, sitting, standing, sleeping all become difficult or impossible. 

I am most fortunate because I was healthy enough, despite smoking off and on for several decades, to be eligible for a left ventricular assist device or LVAD. There are at least two such devices approved for use in the U.S. Thoratec's HeartMate II LVAD and HeartWare's MVAD.  Both are life savers.

I was implanted with a HeartMate II on April 2, 2010 at St. Marys Hospital of Mayo Clinic.  I learned later that my heart had become so inefficient that I would not have lasted but a few days or weeks at most.

Eligibility for an LVAD follows a strict protocol.  A candidate must have bodily systems--kidneys, liver, lungs etc.--that are healthy.  It took the Mayo team a week of testing to ensure that I was fit enough to accept an LVAD.  My age was also a factor.  I was 65 at the time.

Once I received the LVAD and was discharged from Mayo, I kept the LVAD or rather it kept me for the next 38 months and six days.
Mayo declined to list me as a heart transplant candidate because of my age and that I had an LVAD.  Go figure.

Most of the LVAD/Heart Transplant support group in Fargo were implanted or transplanted at the University of Minnesota Medical Center. After about a year of driving to Rochester from Fargo and back (about 5 hours each way), I decided to see whether the U of MN would accept my aftercare with an LVAD in April, 2011.  I was approved and was listed as a heart transplant candidate in October, 2011.

My LVAD performed as designed until about November, 2012, when problems arose. I got a driveline infection.  It was thought to be an external infection but when the pump and driveline were eventually removed, I learned that the infection was internal as well. A driveline infection can be fatal.  

A few months later, there were signs of clotting in the pump.  Since the pump is made of titanium, a clot or signs of clotting cannot be seen directly.  Experience of the cardiologists and some blood tests are the bellwethers of clotting, which can be fatal.

As a consequence, I spent from November through late May, 2013, as a hospital patient.  I returned to Fargo, observed my 69th birthday on June 2, and got the call(there had been two prior dry runs) that a suitable donor heart was available.

That was June 8, 2013.  The miracle of a new heart happened.

I had no idea what to expect when I got the LVAD and certainly had no expectation of ever receiving a donor heart.  I'm convinced that most people do not know what to expect.  

I am grateful for the three-plus years of life the LVAD gave me. A new heart is another ball game entirely.  I wouldn't want a do-over.  Too much stress on wife, family, and friends.  But I'm here to begin 2014. I'll be doing it a day at a time as we all do but with enhanced appreciation for being above ground.

What got me through was determination not just my own but that of my caregiving wife, children, friends, and the whole team of physicians and nurses who got me through the odyssey so far.

Everyone knows there are no guarantees in life. I awake with a smile and thankfulness for another day that I did not expect to see. 

Syndicated columnist Sidney J. Harris once wrote:  "When I hear somebody sigh 'Life is hard,' I am always tempted to ask, 'Compared to what?'