Marfan’s Syndrome and me

Looking back now it all seems to fall in place naturally.  Hell it’s been 15 years now!  November of 1999, I remember swimming in the nice hotel that the hospital put us up in the day before surgery.  I had a beautiful wife (still hanging on to her), 2 daughters (one of which was just born in July).  I was to be admitted the following day for open heart surgery at age 21 and I was scared!

My father worked at the local glass factory in Dunkirk Indiana and to this day I don’t think there is a blade of grass that hasn’t had my footprint on it in that town of about 1000.  I remember riding my bike on the other side of the church on Jay street to avoid the long traffic light.  Thankfully they removed it, leaving us with 1 lone traffic light in the middle of town.

I delivered the newspaper, mowed yards, played baseball and basketball.  I never stopped moving and I was as thin as a rail.  I was never fast though.  It always took a lot of energy to get my long, lanky body working in unison.  It’s hard to believe that regardless of my frame I actually was almost adequate at playing baseball.

As I moved into high school my lung volume became weaker and I ran out of breath much more frequently.  I become less and less adequate at sports although I felt that I tried harder than most of my peers.

After high school I bounced around from job to job even working a stint at the old glass factory that captivated my father’s daytime for 30+ years.  I ended up working at the local parts store for a great small business owner named Kent Garringer.  You know it’s funny how smart we think we are when we’re 20!  You spend your entire life trying to be independent and when you’re 20 you just think that you’ve learned all you need and then you just ‘go’.

One week at Carquest I had gotten sick and I was struggling to catch my breath so I went to the local clinic.  One of the local doctor’s looked a bit like Einstein and he seemed to be have a lot of energy all time.  While in the visit he gave me a subscription for my wheezing but begged me to get an echo-cardiogram because he was concerned about the length of my arms, and how flexible my fingers were.  This made absolutely no sense to me… and don’t forget I was the smartest guy on the planet since I was 20… 🙂

Two weeks later I had told my boss that “I think my doctor is high but he wants me to get a test taken”, and to my surprise Kent was very adamant about me having that test taken.  So I went, and the day off was great!

About three days later I came home and checked the messages on my answering machine and Dr. Potts left a message and he seemed to be a little more hyper than normal, if that were possible.  He told me not to drink any coffee or do any physical activity and to come see him right away!

This is when I found out that I was not immortal…  I had Marfan’s Syndrome and I was suffering from a life threatening situation.  It seemed that I was high risk for an aneurysm of the ascending aorta!

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So the next few months passed as I wore a monitor to record my heart rate and aortic root size.  I had multiple panic attacks prior to my surgery and was scared to death for my life.  I was not insured, I was poor, but I wasn’t alone.  My wife was my anchor through all of this (and she still is).

I now have a constant tick in my chest (St. Jude valve) but I’m alive and ticking (literally).   It took me about 10 years but I have paid off nearly every penny I owe to the hospital (not one bankruptcy).  I’ve had more than a few visits to the hospital for lung issues related to Marfan’s syndrome and these trips get costly.  The medicine that I have to take and the constant blood tests are also a bit of a nuisance.  But when I start letting that stuff bother me, I simply realize that I’m still here…. In this beautiful little fading town… with my beautiful wife, and my beautiful family of 5 and I’m only a hop, skip, and a jump away from my mom and dad.  All of which I love with every tick of my enlarged heart… 🙂

I sometimes look back at my life and wonder when I would’ve died had it not been for the grace of God, the wisdom of Dr. Potts, and the leadership of Kent Garringer.  I write this in hopes that you can understand a little more about what makes me tick (ok, i get it! That pun is overused).  I also would hope to grow awareness for Marfan’s syndrome so maybe one day it is you that will understand and save a life.  If you want to learn more please click here.

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