The start

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I was diagnosed about 1996. I was told it was rather rare,  so back then there seemed to be no one to talk to that had it to compare and or relate to. Mine stated with bad hearty skips,  followed by very shortness of breath.  I could barely talk a few sentences at a time.  Then was put on prednisone, and treated for anxiety.  Was a long battle,  wife would lay awake at night nudging me to get me to breath. Every breath I took I had to think about breathing.  It seemed that I just had to constantly think about breathing.  Breathing just didn't come involuntary. As the years go by u got better. Never was 100%. I now have a defibrillator /pacemaker implant.  My resent ct scan shows some scaring in my lungs.  Some lymph node swelling with no need for treatment.  I will never be the same again but I have fought the fight.  I know I am more lucky than most.  Now I know more people with it that I never knew then,  I don't feel alone.