I'd Prefer To Be Running

Some time ago I wrote the following with the thought I would share it with my High School Cross Country team.  Ultimately I decided it was far too personal to share with the kids.  I still do.  But my medical condition takes up so much of my thoughts and time I decided to include it in a new blog which will focus on issues not necessarily running oriented.  But that doesn't signify a change in my primary focus.  After all, I'd prefer to be running!

The Gift

The last thing I was thinking about as I chugged up that hill on Route 58 between Birch Bark and Holly Ridge was Christmas.  With a full two weeks to go before the big day I had plenty of time to buy gifts for the children, grandchildren and most importantly, Mrs. Coach.  An even more remote thought was that the shortness of breath I was experiencing on the steep incline was an indicator that I might be in trouble.  After no fewer than five decades of running I’d had my share of bad days.  Aching knees, dehydration, upset stomach.  Every runner has been there.  In retrospect I now know that I had been feeling a little bit off since September.  Every day I’d head out with the XC kids on our daily run and lag behind just a bit, finally getting into a rhythm after a mile and a half or so.  At first I attributed this to “hitting the wall.”  Not that wall that pops up 20 miles into a marathon, but the wall that customarily, but gradually rises before you as you age.  I was prepared for that, knowing that the miles would be reduced, and the times would become increasingly slower.  I took pride in the fact that I was still very competitive within my age division in the numerous races I’d run over the past 10-15 years, but the reality of that was that I was simply winning the war of attrition.  Placing first in a half-marathon when you’re one of eight is, after all, no big deal.

But on that chilly day in December, I stopped four separate times over what was for me, a 35 minute run.  As I headed up Winter Street, I stopped for the third time only to notice a couple of our kids exit from Holly Ridge forcing me to start running again.  I got back to the school, led the team through strides, core and stretching.  I said my good-byes and immediately called my daughter, a nurse.  I asked her to come over.  “Bring your stethoscope,” I said, “my breathing is labored.” 

After listening to my lungs, which were evidently clear, my daughter suggested I call my primary care physician because in her words, “It may be a cardiac issue.”  I laughed that off.  After years of running my resting heart rate was in the 30s.  I worked hard for two hours every day to insure my heart had it easy for the other 22.  I had no heart issue.  But that night I thought more about what she had said and called the doctor first thing the next morning.  As my daughter anticipated, I was told to go to the emergency room and I set off for Beth Israel.  I spent the entire day there, missing my first practice in a decade.  After having to re-set the heart monitor several times to account for my well-earned low heart rate, the hospital staff laughed at the thought of me having a “cardiac issue.”  Ultimately, they found nothing and I was sent home, with a follow up stress-test scheduled for the next week.  I made the decision to rest until taking the stress test.  I had been running quite a lot lately and maybe old-age had crept up on me more quickly than I’d hoped.  I arrived at my stress test eager to get it over with, be reassured I was in perfect health, and get back to my team and running with them.  Seven minutes into the stress test my life changed. 

I was walking quickly on the treadmill as the technician periodically increased the incline.  I felt comfortable as, I too, watched the monitor her eyes were glue to.  I may have even said something to the effect, “I can do this forever,” when suddenly I saw my heart rate shoot up from 80-180.  Panic ensued.  Not on my part, but in the technician, two nurses and the cardiologist who all got me to a table and worked with me over the next 10-15 minutes to return my racing heart rate to normal.  An hour later an uninformed and very naïve patient left the doctor’s office with no definitive diagnosis, a prescription for Metropolol, and another follow up stress test scheduled 10 days later.

In that subsequent stress test, the cardiologist assured me that the medicine was working and after 17 minutes on the tread mill went so far as to call me a “beast.”  “More fit than most teens.”  Great news?  Don’t pat me on the back just yet.  He was wrong on both counts.  The side effects of the medication were such that I was wearing running gloves at work, placing foot warmers in my shoes, and occasionally nodding off at my desk.  The “beast” also cut his weekly mileage in half but wasn’t feeling any better.  After a month of this, and armed with an enormous amount of internet research, I inquired about a medical “procedure” which might not only correct the problem, but get me off the meds that were really cramping my now diminished lifestyle.  The medical professionals agreed and the ablation procedure was scheduled for a Friday three weeks later, during which I was instructed to stop taking the medication.

The real adventure occurred over the two weeks following the initial 4 hour procedure during which I was introduced to numerous medications designed to correct the electrical conduction problems within my heart.  I underwent several unsuccessful stress tests to determine the effectiveness of the medication.  I experienced a 60 minute episode of tachycardia requiring the doctors to ultimately knock me out and return my heart to normal rhythm with a defibrillator.  I underwent a second ablation (a 13 hour procedure to correct the first 4 hour procedure which was obviously ineffective) and I was extremely fortunate to be introduced to Dr. Elad Anter, the electrophysiologist who performed the lengthy and difficult second ablation and who finally arrived at my diagnosis. . . ARVC.

Arrhythmogenic right ventricular cardiomyopathy is best described as a genetically inherited disease where the muscle tissue in the right ventricle dies and is replaced with scar tissue. This disrupts the heart's electrical signals and causes arrhythmias. Symptoms include palpitations and fainting after physical activity. Palpitations are feelings that your heart is skipping a beat, fluttering or beating too hard or too fast.  ARVC is often found in the autopsy of young athletes who die from sudden cardiac arrest during exercise.

Following my discharge from the hospital and commencing my now relatively sedentary life, internet research replaced my weight room workouts and running.  I even considered leaving coaching but was in the middle of a season and also had the support of my A/D who encouraged me to hang in there (Thank you, Bob)  and coaches who were happy to pick up the slack (Thank you Mike, Dawn and Steve.)  The internet research provided me with a lot on information, the coaching provided me with the therapy I probably needed given the changes in my life.

Unhappy with what I was hearing from the medical community and buoyed by my own research I began asking questions.  Why did my disease present itself in old age?  With no history of heart problems anywhere in my family history, how did I assume a genetically inherited disease?  What about my kids?  Their kids?  What now?  My research led me to Johns Hopkins Hospital in Baltimore.  I was of course familiar with Johns Hopkins University from which my daughter graduated.  I was well aware of the outstanding reputation for excellence the Hospital had as well.  It took some time but I was able to schedule appointments with an outstanding ARVC specialist, Dr. Hugh Caulkins, and an equally remarkable genetic counselor, Brittany Murray.  Months of being poked, prodded and stuck were followed by receiving a modified diagnosis.  All indications, including genetic testing indicated that while I had ARVC, there was no evidence that it was a genetic form of the disease.  I had neither acquired it from my family, nor in all probability would my children and grandchildren acquire the disease.    My form of ARVC was “exercise induced.”  As incredible as it sounds, that same hard work which resulted in lowering my resting heart rate had also effectively “stretched” my heart muscles, forcing them to break down, and then be replaced with fatty, fibrous tissue which caused chaos within my heart’s electrical circuitry.  That said, I am the luckiest and happiest man in the world.

Now I have a Pace Maker/ICD programmed to maintain a heart rate of 55 which enables me to take medication which would otherwise lower my pulse rate to dangerous levels.  It also provides protection in the event of an episode of arrhythmia and will return my heart to normal rhythm if that occurs.  Although I can no longer run, I can ride a bike with the XC/T&F kids, walk with my wife, and enjoy what for most people my age is very normal life while watching my kids and grandkids live without the threat of ARVC hanging over them. 

Last Christmas I was fairly pre-occupied with my health issues.  I don’t know that I was the most pleasant guy to be around at the time, or even through much of 2017 during which I focused more on my problems than the needs and wants of others.  I may have even wandered into that “feeling sorry for myself” zone.  I can’t get that time back, but I feel confident it is behind me now.  This year I will get to thoroughly enjoy the greatest gift all, sharing my good health with a loving family.  I wish you all the same.

Merry Christmas!