The Story of Peter K.

(Editor's Note: Peter K. is a 50-year-old male, who has suffered almost forty years of consequences from undiagnosed and untreated sleep apnea.  Only in the last year has his life begun to turn around.)

Problems in childhood
 My story began at about age nine. I began to feel unusually fatigued. After incessant complaining to my parents, my doctor had me admitted to the local hospital for testing. This was in 1962, eight years before the sleep apnea syndrome had been defined in the medical literature. The condition progressed, and by age fifteen I had missed 25 % of my classes in school, unable to get up in the morning. One day I was told that I had the highest biology average of anyone in the school, but that I had to “stop this nonsense!” This was a lesson about how other people judge individuals with hidden medical problems. It was a lesson that would be repeated throughout my lifetime. 

During my summer vacation in 1967 my doctor observed elevation of my blood pressure, which is now known as a complication of Obstructive Sleep Apnea (OSA). I was sent for a week of testing at a famous hospital bearing the name of an Ivy League university. I thought that my ordeal would soon be solved. Since this time was also prior to the definition of OSA, there was no way that a proper diagnosis was possible. Unfortunately, the physicians assumed that since they could not find a medical cause, the problem was surely psychogenic. During the final few hours of my stay at that august institution, I was asked if I knew what year it was, and “who is the President of the United States.” 

Problems continue in College and Grad School
After my first semester of college, majoring in Biology, I made the dean’s list and spent the following four weeks in bed recovering from exhaustion. I realized that I could never maintain that level of effort. The college faculty, on the other hand, recognized that I did less work than average and I was told that I could perform to an outstanding level if only I were willing to work. In between classes I was usually lying in bed in my dorm room, while everyone else was having a life. This was only the beginning of the losses that I would incur as a consequence of that insidious devastating thief called sleep apnea. 

Just before graduating, I took the GRE exam. A week prior to the exam I managed to get a friendly physician to prescribe Ritalin and prednisone. The prednisone helped with my respiratory allergies (which enormously exacerbated the OSA) and gave me substantial but partial relief. The Ritalin helped me to stay awake for this all important standardized test. With just a week of medication I had emerged from an intellectually moribund state. I had enough energy to burn for one day to let me score in the top two percent of college graduates. With my less than stellar collegiate record, high scores on the GRE were essential if I were to have any chance for a professional career. Later in graduate school these same scores were considered as proof that I was not working hard enough. I was continually accused of being  unprofessional, because the only place I could sleep during the day was out  in public view on a couch in the library. Once again it seemed to everyone concerned that I just did not have the heart to be a scientist. It took me six years to earn a Ph. D. at a respected medical school, and I managed to land a postdoctoral post at an elite university. However my attitude was always considered to be suspect -- I would disappear at lunch time for a  nap, and upon my return I would face sarcastic comments about my "long lunches." Again I sought a diagnosis at an elite university medical school and after inappropriate tests were administered I was still without an answer.

Still undiagnosed, I start my career; both career and marriage suffer from the consequences
I was constantly urged to work seventy to eighty hours per week as a postdoc. With sleep apnea this was impossible. When my National Research Service Award expired, my professor in charge refused to use department money to continue my salary. In a vain attempt to prove myself worthy, I stayed on for a year without salary. My wife was furious. I found another academic post, this time as a faculty member at a large state medical school. I was so exhausted after four months that I made a last ditch effort to save my career. I asked once again for a medical evaluation. I was tested for narcolepsy and an assortment of neurological conditions, but no one thought of sleep apnea. I knew I could go on no longer as a scientist. Within two months I resigned my position. This led to further erosion of my marriage. My professional life was crumbling and my personal life was also a casualty. I continued to find and lose college and university teaching positions. Eventually my wife believed that my attitude was the root cause of my problems and that I was in denial. Following our divorce, there was virtually nothing left in the life that was so relentlessly and ruthlessly stolen from me.

Finally! Diagnosis and the beginning of a new life!
In the year 2001, the millennium year, I began to suspect that I was suffering from sleep apnea. I asked my doctor for a referral to a sleep laboratory and consequently began using CPAP therapy after receiving the diagnosis of OSA. It was nearly one year before the therapy was effective because of unreasonable delays by the medical equipment company that sold me my CPAP. Adjustment orders were processed in weeks, sometimes months after my doctor sent in requests. Eventually I switched companies. The nasal mask caused me to swallow large amounts of air during the night. I often used the CPAP only fifty percent of the time due to the discomfort. Fortunately a sleep lab technician suggested the full face mask. Now with proper settings and an appropriate mask the improvement in my quality of life has been gratifying. I continue to have some problems with CPAP, such as swallowing air, but I cannot imagine living without it. Imperfect as the therapy has been for me, I have hope for a new life. I believe that my ineffable forty-year gauntlet has just about reached its conclusion

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Now that you have read the story of Peter K., if you would like to email your comments to him, click here: PeterK@apneanet.org. Please note that Peter K will be on sabbatical and will not be able to actually reply to your comments or questions until early Fall of 2002.  Your comments will be held and forwarded to him at that time.

If you would like to submit your own story for possible inclusion on the ApneaNET web site, please email Patient-Stories@apneanet.org. That's how "The Story of Peter K." made it here!  If your story is interesting, it might be published as well.

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