Real Life Story – Marfans Journey #2

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My name is James Beal.  I was born in north Carolina in 1980.  I lived a normal childhood with little fear.

At night when I would go to bed I would always have the same strange dream.  I would dream I was sitting on the stairs looking out the window.  The Easter bunny would run by the window like someone was chasing him.  Then the devil would run by.  A few minutes later the devil would peek in the window,  hold up the rabbit ear and point at me.  At that moment I would wake up with severe chest pain unable to speak.  The doctors always said it was a heart murmur.

At 15 I was falling asleep in class, having severe chest pains, and unable to focus on anything.  I went to the Dr., but was told it was growing pains.  While running track one day, I had a heart attack and hit the ground.

I was sent home for the day.

That night I had another heart attack while watching TV.  My mom knew something was wrong.  In a panic she dialed 911.  They said there was too much ice on the roads to come out right away.  My mom proceeded to carry me out to the car.

When we got to the hospital I was pronounced dead.

I woke up in the basement of the hospital.  Doctors didn’t know what to think.  I was referred out to Johns Hopkins hospital for tests.  Dr. Conn sat down in the floor with me and said “I know this is hard for a 15 year old to understand, so I am going to draw out what is happening”.  She explained to me that I had Wolfe Parkinson White Syndrome.

I went into surgery the next week.  When I woke up I was greeted by Dr Calinponie who explained I had Marfans Syndrome and that I would be going back into surgery for pectus excavatum.  He said my life would change dramatically and I wouldn’t be able to do a lot of things I had done in the past.  He also said that I would be lucky if I could run anymore.

After many days and nights of wanting it to end because everything I loved doing was gone.  About 5 months went by and I decided this wasn’t going to beat me.

I started bike riding every day.  Started out at 1 mile and worked my way up to 30 miles a day.  Then I moved on to roller blading and did well with that.

Finally, I decided that Drs were wrong and I joined AFJROTC in high school.  After I graduated in 1999 I decided I wanted to join the military.  I told the MEPS Drs everything I went through and they said if I got a release from Hopkins we would move forward.  I got on the phone and got an OK from Hopkins.  I was so happy they gave me the OK.  I joined the army national guard and served as a Sargent in the 88B Air Borne Assault Battalion.  Finished out my four years and went to school to get my masters in business management.

I got married to my loving wife Kari and we had a daughter.  2 years ago we had our second child.  Both of them have Marfans traits.  I know it is going to be rough on them, but at least we know what to expect.  I am just thankful I have not had to have any more surgeries since ’95 and that all I really have going on now is lower back pain and occasional numbness in my legs.

My advice is to keep your head up, always know there is a higher power with a plan for you and never let a Dr. or anyone tell you that you can’t do something.

 

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Other Links to this Post

  1. The Zippy Zebra » Real Life Story #5 -Rikard’s Life With Marfan Syndrome — March 1, 2015 @ 3:41 pm

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  3. The Zippy Zebra Real Life Stories #3-Marfan Journey - The Zippy Zebra — September 19, 2016 @ 10:04 pm

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