Patient Stories - Tracy 's Story

I believe, now, that I was born with obstructive sleep apnea (OSA) it just took 35 years to figure it out!

My childhood memories and health were wonderful, but I now know there were clues to my eventually developing OSA: a short, thick neck, mouth breathing, snoring, and an obese father who snored loudly. Sleep apnea is highly hereditary. I suspect more than one of my three brothers also has sleep apnea.

I had never heard of sleep apnea nor any sleep disorder prior to diagnosis in 1989 at the age of 35. My interest in sharing this story is twofold: (1) to help others diagnosed with OSA achieve successful compliance and (2) to create OSA awareness in both the public and medical communities in an effort to promote accurate diagnosis and treatment.

The Problem Begins...

Never an obese child, I began gaining weight shortly after my marriage at age 19. I weighed 120 pounds then. The weight came on at the rate of 20-30 pounds the first year. Two years later I became pregnant with my first child and at delivery by C-section I topped the scales at 200 pounds. By this time in my life, I was the proud owner of a florist shop.

I remember many days where I could not get through the day without napping in my store. Embarrassingly, more than one customer found me snoring loudly in the back room. My business was open 6 days a week and the 7th day was spent cleaning and preparing for the next week to begin. I was exhausted but chalked it up to the work load.

By now, I was plagued with daily headaches and tired all the time. It was at this point that I believe people started thinking of me as being "fat and lazy", a reputation I carried with me for the next 12 years.

As hard as I tried, I was unable to lose weight. I found myself exhausted all the time. My daily headaches were now termed "migraines". My family doctor and my OB/GYN implored me to lose weight and seemed angry at my inability to do so. I felt they had joined the ranks of those who thought me "fat and lazy". I was beginning to wonder myself. Once confident and self-assured, my thoughts were now of depression and poor self-image. I felt I was an embarrassment to my family.

Attempting to Diagnose...

Shortly after the birth of my second child I topped the scales at 230 pounds. I was 26 years old. We moved to a large city where I continued my work as a florist but found it increasing difficult to function in any capacity. My weight continued to soar upwards to 260 pounds and I became aware that I was breathing very loudly as almost a snoring noise while seemingly awake. Desperate for answers, and in an effort to rid myself of my headaches and address my weight problem, I changed directions seeking a new team of physicians and started with an endocrinologist.

After running a battery of tests she informed me that my thyroid function was normal, I was not diabetic yet, but borderline. She put me in the hospital for further testing. I underwent a CT scan of the brain, which was within normal limits. She sent me on my way telling me to lose weight. To address the snoring, I saw an ENT, who found a poorly repaired deviated septum from a childhood broken nose, but declared it was probably not a contributing factor. He was fascinated by the removal of my uvula and seemed more excited about calling in his colleagues to “look” as he was in helping me.

The OB/GYN diagnosed polycystic ovarian syndrome and informed me that this disorder contributed to the production of too many male hormones and must certainly be causing my weight gain. Since my family was complete with 2 children, he recommended a complete hysterectomy. This would eliminate any chance for cancer (which runs in my family); and also, he said, I would finally be able to lose weight.

Hallelujah, finally a reason for the weight gain and inability to lose weight! I was thrilled and eagerly scheduled myself for a complete hysterectomy at the age of 32. Unfortunately, all the surgery did was throw me into menopause and the scale kept creeping up. Depression really set in now.

Life is Almost Unbearable...

By the time we moved to a small town in Florida my children were in grade school. When I woke in the morning, they had already fed themselves breakfast and waited outside for the school bus. They were accustomed to fending for themselves; I spent most of my day in bed. I would normally wake between 9 and 10 in the morning feeling sleepy and always with a whopper of a headache. Since I no longer worked, I rarely got dressed. I "lived" in my bathrobe. When they returned from school, my children usually found me in bed napping. Mom was ALWAYS sleeping. It seemed all I could do was sleep and eat. My weight hovered just below 300 pounds. I was embarrassed to be seen in public. Someone, please help me!

Although my dear husband and children never said a word about my weight, I felt they must be terribly ashamed of me. Depression, exhaustion, memory loss and the inability to concentrate ruled my life. On a good day, I would dress and drive to my children's school to volunteer as a room mother. More than once, I caught myself falling asleep at the wheel of my car. Someone, please help me.

Even the love for volunteer work in my community had become a chore. It took great effort to keep appointments. Heavy make-up hid dark circles under my eyes. I became good at "appearing" to be alert. I could smile on cue. No one knew how bad I felt. At night, my snoring was so bad, the grunting, gasping and choking noises would actually wake me up. My snoring had become a family joke. I could wake the dead. I wanted to die. My self-esteem was at an all time low. Fat and lazy, that was me! Once an active, happy person, I no longer recognized myself. I was now deep in depression and suicidal.

Crisis and Diagnosis, Finally...

Another year passed and I woke one morning with the worst headache of my life. My head felt like it would explode. My vision was blurred and my right side from head to toe was tingling and numb. I could not get my husband on the phone, so in a panic I decided to drive myself to a neurologist's office. Something bad was happening; did I have a stroke?

Upon examination, the doctor quickly surmised that rather than a stroke; I appeared to have the symptoms of severe sleep deprivation. “Sleep what?” I said. He referred me to a pulmonologist who immediately put me in a sleep lab. I was diagnosed with "profoundly severe obstructive sleep apnea with significant desaturations". I had no idea what any of that meant; but was eager for answers.

It was recorded that I experienced 564 apneas and hypopneas with an apnea and hypopnea index of 96.4 events per hour. My heart rate was recorded at 41. My oxygen saturation level dipped to a frightening 50%; normal being 90%-100%.

Upon this diagnosis and discussion of the severity of my situation, it was suggested I undergo UPPP, a new surgical procedure where the uvula is removed, soft palate trimmed and tonsil/airway tissue trimmed as well. I did not ask questions, rather did what I was told by my doctor. I was afraid for my life. I had never heard of sleep apnea nor the UPPP procedure. The surgery was unpleasant, both painful and expensive. Post-surgery, I returned to the sleep lab for another overnight study. The results were worse with an increased RDI from 96.4 to 108. The surgery was a failure. A radical weight loss program was ordered and I was approved to begin the Opti-Fast program, which consists of a liquid only fasting regime monitored closely by doctors.

The diet program lasted six months; with three months of fasting and then slowly introducing small amounts of foods over the next three months. I participated in this program twice, back-to-back meaning I ate no solid food for six months. I lost almost 100 pounds. Returning to the sleep lab for yet another study revealed slight improvement, but still a diagnosis of profoundly severe obstructive sleep apnea. I was still experiencing frightening and significant oxygen desaturations.

Difficulty Coping with CPAP...

All the while I was trying to be compliant on CPAP with the addition of oxygen. I spent the better part of the first year after diagnosis on CPAP. I was never able to tolerate it completely. My initial pressure setting was 7, post UPPP it jumped immediately to 9.

Although not claustrophobic, pressure of 9 felt hard and left me feeling a sensation of suffocation and choking. I was never able to keep the mask on for more than a few hours per night. My doctor, disappointed in my noncompliance with CPAP informed me my only other option was a tracheotomy. Without it, I would be dead in five years or less, probably sooner than later.

A happily married mother of two young children, I did not want to die, but I felt like I was. I wrote a "goodbye" letter to each of my children and my husband and placed them in sealed envelopes and put them in a special place where I knew they would be found when I died. I was certain the end was near.

A Second Opinion Improves Things...

Seeking another opinion hundreds of miles from home, I underwent my third sleep study and an MSLT (multiple sleep latency test) a procedure used to diagnose narcolepsy. The results confirmed my severe OSA condition but ruled out Narcolepsy suggesting my excessive daytime sleepiness was indeed apnea related. My RDI was still 108.

My new sleep doctor considered UPPP a barbaric and unnecessary surgery. Studies had already shown a dramatic failure rate for correcting OSA. He also suggested that the fasting liquid diet that allowed me to lose almost 100 pounds was an unhealthy way to lose weight and my metabolism would suffer for it for years to come. It did! As hard as I tried, the weight started creeping back up.

Over the next year I gained back 40 of those precious pounds. What this wonderful new doctor did do was introduce me to a new product on the market...BiPAP (Bi-level positive airway pressure). I believe it saved my life.

The difference between CPAP and BiLevel is that upon exhalation, the pressure decreases significantly, allowing the patient to exhale easier. No more suffocation and choking. I was immediately able to tolerate BiLevel and experienced the first good sleep I had had in probably ten or fifteen years.

BiLevel Works!

Within a few weeks of BiLevel use, my life returned to normal. My husband and children were thrilled to "have me back". My daily headaches disappeared and I no longer required daytime naps. I awoke refreshed and happy. Depression gave way to a new exuberant attitude. I was able to return to work, I was able to return to life. It was like a miracle to me. Not one day has passed that I have not gladly used the BiLevel. I can't imagine life without it. Now, it's a wonderful life!

Over the years, I have voluntarily returned to the sleep lab to monitor my condition. Each time my pressures have been increased slightly to their present setting of 20-11 (20 on inhalation, 11 on exhalation). It has been suggested that the development of scar tissue and other UPPP related consequences are responsible for the worsening of my apnea condition. The only downside has been that my memory of the 10 years prior to diagnosis is not good. I will never get that back. I look at it as a small price to pay for the wonderful life I now live thanks to a proper diagnosis and treatment.

Life Goes On!

Spending the past eighteen years educating myself on sleep disorders has been rewarding. Utilizing the internet in the early 90's introduced me to message boards and chat rooms. I am a believer in patient to patient support which was the driving force in becoming a founder of Talk About Sleep. This has afforded me the opportunity to attend medical conferences and experience educational programs not normally available to patients. The more I learn, the more I am fascinated by sleep architecture. Being able to share my story globally has been a humbling experience as it has put me in touch with literally millions of people over these many years. To know that my life is dedicated to the service of helping others through my work with Talk About Sleep makes life complete.

Read Tracy's Story Part 2

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