Bill's Sleep Apnea Story

"Mamas, Don't Let Your Babies Grow Up to Be Sleep Apneics"

My Mom Told Me I Snored!

Like most people with obstructive sleep apnea (OSA), my diagnosis was the result of a loved one telling me about my snoring. While I was visiting my parents, I fell asleep watching TV. My Mom woke me and told me I was sleeping and snoring loudly. Of course I told her I wasn't. This went on for a year or so. When I visited my parents again, my Mom asked me if I had told my doctor I snored; I told her no.

Finally I decided to tell my primary care doctor that my Mom told me I snored. He gave me a referral for a sleep study. My neck size is larger than 17 inches, I am overweight, my sister has Sleep Apnea, and I have Type 2 Diabetes. With all these classic symptoms, I fit the typical profile of someone diagnosed with Sleep Apnea. I still can't figure out why, with all the classic symptoms of OSA, that my Family Doctor didn't refer me for a sleep study sooner, besides not knowing I snored. He DID know I had all the classic symptoms (he just didn't know I snored). Once I informed him of that, he put it with everything he already knew and referred me to a sleep study. I strongly suggest that if someone tells you that you snore, that you let your Family Doctor know ASAP.

Getting Diagnosed

My sleep study was done on May 6, 2001. The sleep study technician told me that if the monitoring indicated that I had sleep apnea, he would wake me up and put a CPAP on me. (CPAP is an acronym for Continuous Positive Airway Pressure. The CPAP machine delivers pressurized air through tubing and a mask. The pressurized air acts as an air splint to hold open the airway while the patient sleeps.) Part way through the sleep study the technician did wake me up and put me on a CPAP. I slept GREAT…in fact it was the best sleep I had remembered in a long time. The next morning the technician woke me at 6:00 AM and the study was over. I "unofficially" knew I had Sleep Apnea; however, before a patient can get a CPAP to bring home, the Sleep Doctor needs to "diagnose you", which in most cases is just reviewing what the technician did and writing it up. (Editor's note: The sleep doctor must review both the computer and printed records of your sleep study, looking for apneas, hypopneas, arousals, and other evidence produced by all the sensors you wear during the sleep study, in order to be sure of the severity of apnea and any evidence of other issues.) When you talk to the doctor about the sleep study, BE SURE to request a copy of the written report.

I Want My CPAP

Since I now at least "unofficially" knew I had sleep apnea, I wanted a CPAP. For whatever reason, it took the sleep lab A MONTH to "officially" diagnose me. The results went to my Family Doctor. Once my family doctor had the results, he wrote a prescription for a CPAP, but due to red tape with my extended health carrier, it took a week to get approved.

By the time I was officially diagnosed with Sleep Apnea, I had had a whole month to research the various CPAP machines and masks. My sleep therapy company told me I needed a humidifier and he gave me one although I didn't yet have a prescription for it. I called my family doctor and had a prescription faxed over, which took two weeks. My family doctor had written the prescription for a Respironics mask, since that is what was used in my sleep study, but did sign the prescription where patient selection is permitted. My sleep therapy company said that most people have good luck with the Breeze Nasal Pillows.

Feeling Great!

It's been a little over a month since I started using a CPAP and I have been sleeping MUCH better and will not sleep without my CPAP machine. It has enabled me to watch TV shows and not fall asleep. I also feel like I have more energy and walked to the store (a five to ten minute walk one way) whereas before I would have driven my truck.

Since using the CPAP I feel like I have MUCH more energy! I have started walking on Saturday's. The trick is to leave my apartment in time, so that I will be home prior to 9:30 AM (at least in the summer) when the temperature often is higher than 100 degrees.

Prior to using the CPAP, I use to wake up around 3 AM every morning to go to the bathroom, then I would get something to eat. This led to weight gain. Since being on the CPAP I no longer wake up at 3 AM. The last time I went to the doctor, his nurse told me I lost two pounds. I hope the weight loss continues. My blood pressure is lower, and my doctor and I are watching it. Hopefully at some time I in the future I'll be able to get off of the hypertension medication all together.

Jim's Sleep Apnea Story

"A SLEEP APNEA CHAT SUCCESS"

Like most persons with sleep apnea, at first I denied that I had a problem. It was my wife's love and persistence that prevailed and finally made me seek help. I respect and applaud my wife's insistence on having me seek treatment for my Sleep Apnea, which may have never been discovered without the help of her "online buddies." Something she was doing for her enjoyment in an online Sleep Apnea chat certainly changed -- and may have even saved -- my life!

Here is my story!

Late in 1998, my wife was invited to join in on a sleep disorder chat by one of her online friends. She knew little about sleep disorders. As she watched the conversation, she began learning about sleep apnea. The more she learned, the more she saw that I fit the profile, exhibiting all or most of the symptoms.

Looking back, I exhibited signs of sleep apnea for about 4 years. My symptoms were sleepless nights, as I would sleep for about an hour, awaken and then not be able to fall asleep again. I would become drowsy while driving early on and later would actually nod off momentarily while driving. I would need to take frequent naps during the day. I was also moody, irritable and suffered from leg "kicks" while sleeping.

My wife will tell you that she informed me about the sleep apnea chat. She told me I snored loudly and stopped breathing in my sleep and reminded me how tired I always was. She wanted me to see a physician and be checked to see if I had sleep apnea. I wouldn't hear of it! I laughed at her when she suggested I join in on the online chats to learn more about apnea. Eventually my wife's persistence prevailed and after about 3 months, I sat at the computer with her and "watched" the chat. I still did not believe I had apnea…oh no, not me!

A year passed and we were on the freeway, myself driving and my wife and children in the car. I nodded off while driving and crossed over into the next lane. Luckily, I was able to regain control and we were very fortunate that no one was hurt. My wife said, "that's it, I am making you an appointment to see a doctor about this!"

I finally made the appointment to see a sleep doctor, but had to wait 3 months to be scheduled in for an overnight sleep study. During those 3 months my physical health deteriorated. I was at my wits end. I was not sleeping well, and wondered if I would live long enough to make it to that appointment! I had severe swelling in my ankles, water retention, edema, an enlarged heart, high blood pressure, irregular heart beat an underactive thyroid, knee and back problems. I weighed 418 pounds.

Of course, the sleep study showed I had severe apnea. I was put on CPAP with a pressure of 11. It was difficult to adjust to the mask at first, but I finally achieved 100% compliance. I go nowhere without my CPAP. I use it when napping and when I travel, it goes with me! I no longer feel tired and I have energy once again!

When I was diagnosed with apnea, at age 47, I was in the process of retiring from a metropolitan police department. The memory loss and lack of energy from apnea was affecting my performance. The apnea would have made me totally unfit for my job had I been on full duty status. However, I was on limited duty status for my last 18 months due to knee and carpal tunnel surgeries. I also had high blood pressure, heart problems that included leg swelling. Having apnea combined with the obesity were the key factors in my retirement decision.

Once on CPAP, I experienced what I was missing in my life. I got back the enthusiasm to want to lose even more weight and regain a healthier lifestyle. I owe a great debt of gratitude to my wife and her "online buddies" in the Sleep Apnea chats where both she and I got GOOD information, encouragement and probably the best advice ever!

People who participate in these health chats should not underestimate their value to those "looking in". I am an example of how someone has benefited greatly by the sharing of information with virtual strangers in the Sleep Apnea chats online. For me, they have made a positive, profound and life changing impact!

Lauren's Sleep Apnea Story

"THE AFTERMATH OF A MISSED DIAGNOSIS"

Editor's Note: In January 1997, Lauren (a 37 year old woman) began treatment with CPAP. About one week later, she wrote the following description of her frustrating experiences in seeking a diagnosis, which has been edited for publication.

Going to the Doctor

It was February 1995 when I first spoke with my doctor about the possibility that I had sleep apnea. He did not think I did. It was two long years before I sought a second opinion. During my initial visit with Dr. R, she immediately referred me for an overnight sleep study. Soon after my sleep study, I was put on CPAP and began to recover from years of severe sleep deprivation.

I couldn’t remember the time frame, but Dr. R confirmed that my doctor had documented my request for a sleep study in February 1995. That means that I have spent the last two years suffering needlessly, unable to function, virtually sleeping my life away.

The Missed Diagnosis

I am very angry with my original doctor. I feel like he stole these last two years from me by not evaluating me for sleep apnea when I first begged him for help. I had been suffering for some time before I finally found the nerve to discuss my concerns with him. I had specifically mentioned that my brother had been diagnosed with apnea about a year before, and that I was experiencing many of the same symptoms. He wrote in the records that he ruled out apnea, but the only testing he ordered was an electrocardiogram, which was done in his office that day.

After he told me that I didn’t have apnea, I dutifully began taking an antidepressant, which he prescribed. I continued to struggle without any relief, until just a week ago when I began using CPAP following my sleep study and diagnosis of my sleep apnea.

Frightened

When I found out after my sleep study in December 1996 that I had apnea, I was terrified for a while. I became frightened to sleep, afraid that I would die in my sleep. I would not go to bed, but would sleep only when I involuntarily fell asleep in the chair in the family room. Considering that the little bit of sleep I was getting was severely disturbed, it’s no wonder I could not function in my daily life.

I was depressed. I once told my husband that if I had to live like this for the rest of my life, I would rather die now. I don’t think he realized I was serious, but I was being very honest. I had begun to have thoughts of suicide and of how I would finally be able to rest when I was dead.

Learning About Apnea

Since my "accurate" diagnosis, I have done a lot of reading and research. I think I had every red flag possible; I was a textbook case with all the symptoms. I have learned that the only way to diagnose sleep apnea definitively is with an overnight sleep study. Instead, my doctor did an unnecessary test and then proceeded to medicate me inappropriately, with a medication, which can actually be dangerous for those with sleep apnea.

I am terrified that some irreparable damage has been done to my body in these last few years from the undiagnosed and untreated severe sleep apnea. My understanding is that untreated sleep apnea can lead to cardiac and pulmonary complications. Will my risk for these problems be higher for the rest of my life because of being untreated for those years?

Untreated Apnea Caused Difficulties in Family Life

I look back on the last two years with so much sadness when I realize the strain this illness put on our marriage. My husband really took up the slack, because I literally did not have the energy to get up in the morning and rarely did any of the household tasks that were my job. Because I do not work outside my home, I was able to hide from him and from most everyone just how non-functioning I was. He saw the consequences, however, and this made things harder for us in our relationship. He did not understand why I could not do simple things like clean, cook, and take care of the house. We had many bitter fights about this, and I blame my doctor because it was all so unnecessary!

I think the only people who really knew how I spent my days were the children. They were used to seeing me asleep all the time during the day and were remarkably patient with me. But I feel a deep sorrow and sense of loss that I slept through so many years of their short lives. In February of 1995, my children were five and three, such important ages for development. I pray that I have not harmed their personalities and growth by being so dysfunctional. It must have been absolutely horrible for them to have a mother who slept in the chair all day, never had energy to do anything, never felt good, and couldn’t supervise them properly or participate in their lives fully. I love them so much -- it brings tears to my eyes to realize how bad a mother I was these last few years.

One of the most painful things that happened during this time was when my husband said that he was worried about the kids and didn’t think I was a good mother to them. I knew in my heart that I was doing the best I could, and at the same time I was devastated that I couldn’t be everything he wanted me to be, and everything I knew they needed. But I also knew that he was right. I wasn’t a good mother to them, but I was powerless to do more.

CPAP Makes Me a Different Person

I’ve been like a different person this past week or so since I received the CPAP. All I can do is pray and hope that I can make up for the bad times with extra work and attention now. I am sure that they love me, and I am sure they know how deeply I love them. I hope that knowledge is enough for them to forgive me for the past few years and to move forward to having a normal mother. They have been so sweet and understanding about Mommy having trouble breathing at night. They know all about my machine and ask me about it every day. Their concern for me touches me deep in my heart. I’m crying as I write this. I think until I knew I was going to be OK, I wasn’t able to face these feelings and honestly accept how horrible these years have been for them. I couldn’t accept something so awful about myself until I knew that it was going to be manageable.

I can never get back the wasted years, and that is so unfair. My husband also suffered a loss: he lost his companion and friend, his wife, homemaker, and helpmate. This has been a terrible strain on our marriage. I can’t express how hard it has been for him to fill in the empty spaces that I couldn’t fill because of my illness. He’s had to be both a father and mother to the kids more often than he ever should have had to. After working long days at his job, he came home to a sleeping lump in the chair, a dirty house, chores unfinished and unstarted, and needy children. He is a wonderful husband and father, and I love him very much for standing strong by me, even though he didn’t understand how sick I really was.

This has been very difficult for me to write. But I guess what I have to work on now is forgiving--forgiving my husband for not understanding, and forgiving myself for not being able to function these past few years. Even though it was not my fault, I have hurt others by being sick and that is hard for me to accept.

As I am coming out of this deep and long-standing fog I have lived in, I am experiencing a sharpness and clarity in my mind that can be painful. But I threw away the Zoloft the other day, and I feel very happy and strong. It is so wonderful to have energy and the ability to get through the day, accomplishing my goals and feeling really good.

Four Years Later

Lots of things in my life have changed for the better since my apnea was diagnosed and successfully treated! I have dedicated myself to helping those who are struggling with sleep apnea, and I have grown stronger by sharing my experiences and knowledge with others.

On a more personal note, my family relationships are much improved. As my energy has returned, I have reclaimed my life! About one year ago I had gastric bypass surgery and lost 150 pounds. Along with the excess weight, I lost my borderline diabetes, joint and back pain, abnormal liver function, and most exciting of all my sleep apnea. My most recent sleep study was completely normal, and I no longer use CPAP. I do consider myself in remission, and I will have future sleep studies to monitor my OSA condition. Life is good!

Please Seek Help

If you think you may have sleep apnea, but have not yet been diagnosed and treated, please contact your doctor as soon as possible. Discuss your symptoms and request a referral to a sleep specialist so that you can seek the help of a sleep expert. Getting diagnosed and treated may well save your life and will certainly improve your quality of your life.

Liz's Sleep Apnea Story

"A FAMILY LEGACY"

Does obstructive sleep apnea run in families? In mine it does a marathon!

First, My Diagnosis

I had been to the doctor so many times complaining of exhaustion over the years, I wondered if my chart must not have some notation of hypochondria in it! After all, the tests always came back normal, and we had checked everything--thyroid, chem.-20, hormones, allergies, EKG--what else could we possibly check this time, that we hadn’t done before? I was just fat, forty-something and fatigued.

"Lose weight, don’t smoke, and exercise". For this, doctors go to school for how many years? Learned all that in fifth grade health class, didn’t we? If all my tests were so normal, why did I feel so awful?

Falling asleep every time I sat down--in front of the TV, at my desk, in meetings. Sleeping 16 hours a day and still feeling exhausted wasn’t normal. If menopause accounted for the waking up in a stupor with a sweaty gown, wet hair, a dry mouth, and drool on the pillow, ok; but how many years does this little party last? And "fluid retention"? Just when am I retaining it? Certainly not at night--if I had any more potty trips, I could just take my pillow and sleep in there!

Aware from TV documentaries that many people had found their own elusive diagnosis and cure from personal research on the Internet, I began "searching". Fatigue, Exhaustion, and Sleep, yielded interesting "hits" on common and rare disorders. Many shared some of my symptoms, but only apnea was a 100% match. Hmmm, why had I never thought to mention my snoring problem to my doctor? I guess I had always just thought of it as something that is, like my freckles; just part of the family legacy--annoying, but nothing to worry about or treat. We all snore!

Well, back to the doctor. This time armed with the "apnea symptoms checklist". As I began to describe my snoring, he interrupted me, and said, "I think I know where you are going with this, and I bet you are right. That probably also explains your developing high blood pressure. I’ll get your sleep study set-up right away!"

My apnea was severe, and I began CPAP at a pressure of 18. From the first night, I felt better than I had felt in many years! My blood pressure returned to normal; my muscles no longer ached; my hands and feet were no longer swollen. I slept peacefully all night, 8 hours, and woke just before the alarm. My hubby no longer had to spend 30 minutes in the morning trying to be sure I was up. I remained alert and active all day--no naps, no caffeine, Dr. Pepper or M&Ms needed to fight off sleep.

Then, My Two Sons

Thrilled and fascinated with my newly discovered diagnosis and treatment, I kept returning to the Internet, and each time, I would learn a little more.

Many people were misdiagnosed with allergies and depression… That sounded like my oldest son, the fanatic about cleaning the air filters, and always wanting a humidifier in his room. Although he had seemed to have a severe bout of depression, antidepressant medications made him "manic" and allergy medications did nothing to help his morning dry mouth and sinus headache, or the purple circles under his eyes. He had always had borderline high blood pressure, even as a twelve-year-old. He and his brother had both had ear tubes to drain fluid build-up, just like my brother and I.

I also read that the same cortisol levels that increase the blood pressure can lead to panic attacks for some apnea patients. My younger son was being treated with Paxil for panic attacks. He would wake up in the night, complaining that his heart was racing, his mouth dry, he was choking, drooling, couldn’t breathe, and convinced he was having a heart attack. My oldest brother and I had both also suffered panic attacks at his age. He was also enduring severe headaches, and having trouble staying awake in the afternoons, and when driving. He had thought this might be a side effect of the Paxil, so like his brother, he stopped taking the medication. He said he didn’t know what was wrong with him, but the Paxil wasn’t helping.

I forwarded information to them, and asked them both to discuss apnea with their doctors. Apparently healthy, my younger son's doctor told him she was positive that he did not have apnea. She ran a host of other tests, including a CAT scan, which scared him to death. "Mom," he said, "I think she thinks I have a brain tumor." I told him, well, take the test to satisfy her, and when it comes back normal, ask her again for a sleep study. She finally relented, stating she would allow him to have the sleep study to prove to him that he did not have apnea. He was too young, not overweight, and didn’t fit the profile. He retorted that it did fit his family profile. He does have mild apnea and started CPAP at 7 cm. of pressure. He no longer has panic attacks, headaches, morning dry mouth or that family doctor!

My oldest son took note of his little brother’s improvement! A senior in college, he was willing to try anything that would help him stay awake through his afternoon classes! He said he wasn’t sure all his professors took his snoring as a compliment to their lectures, and he was afraid they just assumed he partied too much. His doctor referred him to a Respirologist. His sleep study revealed moderate apnea, and he started CPAP at 10 cm. His sleep doctor also referred him to an ENT due to his enlarged tonsils. Based on that exam, he recently had his tonsils removed and a turbinate resection to open nasal passages. He is awaiting a repeat sleep study to determine if this improved his apnea, or if he will need to continue on CPAP.

My Little Sister

Very sure that both of my brothers had all the classic symptoms, I kept sharing information at each family gathering about our diagnosis and treatment, and statistics about family predisposition. Well, while my brothers seemed to be ignoring me, my little sister called to ask me to drive her to her sleep study. I was shocked! Of course she snored, and complained of morning dry mouth, but she was just 5’2", 125 pounds, and I really didn’t think she had a problem. I was wrong--she has moderate apnea and CPAP at 11. Results I quickly made known to both of our brothers!

And My Two Brothers

My youngest brother had always fallen asleep driving. If he was driving, while he kept his eyes on the road, it was the job of the front seat passenger to keep their eyes on him, and poke him when (not if) he started to nod off. When I read the article about fatality statistics for untreated apnea patients involved in motor vehicle accidents, I e-mailed it with this note. "Don’t worry brother, not every untreated apnea patient dies in a violent car wreck, some just have cardiac arrest in their sleep. How’s the blood pressure?" His wife e-mailed me back that he had made an appointment for a sleep study! He has severe apnea, and was prescribed Auto-Pap. At this point my older brother had to concede, and is also enjoying renewed energy on his auto-pap.

And Maybe

Recently, we all gathered at our folk's house for the weekend. In spite of a huge meal, the only one down for the traditional after lunch nap was the brother who thought he could travel without his auto-pap. I chuckled to myself as I heard my oldest brother tell my Dad, "You know this runs in families, and Mom doesn’t snore." Wonder where he heard that?

Mary's Sleep Apnea Story

Happy PAPday to me, Happy PAPday to me, Happy PAPday to me, it's my second anniversary!!

I woke up this morning at 6:30 am. It’s a weekend, I could have slept in, but eight hours of quiet restful sleep is all I need. I will be energetic, alert and feeling great all day. I will work some, play some, and enjoy my health, my family and my home.

This is a stark contrast to life, as I knew it before CPAP. I remember the day I finally received my precious CPAP machine.

I lay in bed in that foggy state, not really asleep, not fully awake. My chest ached with that dull ache that had become all too familiar. It’s the same ache that had made me contemplate whether I could be having a heart attack more than one morning in the last few months. It’s the ache that had caused me to try taking one of my husbands’ nitro-glycerine tablets at least three mornings. I reasoned if the nitro eased the pain, it would help me know if the ache was from a looming heart attack. This attempt at self-diagnosis and treatment had only served to escalate my dull morning headache into a pounding migraine.

I could hear my husband in the kitchen cooking breakfast. I could smell the coffee. I looked forward to my first pot of coffee each morning. It seemed the steam and hot liquid helped dilute the thick mucus that coated my mouth and throat each morning. Night time mouth breathing, choking and gasping for air condensed the mucus in my mouth, nose and throat to the consistency of thick molasses. I reached for the glass of water always positioned at my bedside. Time for the morning mouth swishing, hoping to free the glue dried to my tongue and lips, and then send a few sips trickling down my dry parched throat. Still groggy, the glass dribbled down the front of my gown as my unsteady hand guided it to my lips.

Still fighting for wakefulness, I swiped away the cold water running down my chest, now mixing with the rivers of perspiration that greeted me each morning with the rising sun.

My gown and hair seemed to cling to me, as if I had just been caught up in a morning thunderstorm. As I sat up in bed, and repositioned my pillow behind me, it was damp and soggy with my own perspiration, and smelled a lot like fermented gym socks.

So it’s morning again!! I had managed a half sitting position, which might serve to keep me from succumbing to the exhaustion still begging for relief. My face prickled with stinging sensations in every pore. My muscles ached with the burn of a marathon runner just crossing the finish. My joints ached, and I knew that the moment my feet touched the carpet, electrifying shocks of pain would pulse through my heels, making them retreat from the floor, as if I’d just stepped into a bed of hot coals. So I will sit here for a few more minutes, twisting and turning my ankles, drawing little circles with my toes, preparing my feet to carry me to the coffee, praying the caffeine will work quickly!!

As I reach again for the glass of water, and begin to sip, the violent coughing begins. Struggling for a deep breath between the torrents of air exploding into coughs, I feel choked as the thick phlegm progressing up my throat strangles my air. My eyes seem to bulge and tears stream down my cheeks as I fold forward into a series of coughs and wheezing. The coughing fit makes me feel dizzy and weak. Tingles race down my arms, legs and toes as every nerve in my body senses the lack of oxygen. While abdominal muscles jerk and heave the thick mucus into my mouth, the small of my back pops as the spine is subjected to the convulsive coughing spree.

My too full morning bladder responds to the coughing in predictable ways.

But it’s not only morning; it’s the day I’ve waited for so long. It’s been seven days since my sleep study, and today, I will drive twenty miles to the ENT office, and come home with my very own CPAP and sleep without choking, gasping or fear of dying.

So I force my body out of bed, and move carefully toward the kitchen, sidestepping piles of dirty clothes, past the sink full of dirty dishes soaking in stagnant water, to the coffee pot. As I return to my chair, coffee in hand, I shove aside enough stuff to find a place to sit down. It all drops to the floor, except for the towel I leave protecting the cushion from my urine-dribbled underwear.

I sit, sipping my coffee, starring at my swollen ankles, trying to force my mind to organize a list of the most mandatory things that must be done. With so little energy, it is amazing what things can move from the “must do” list to the “I won’t die without it” list.

Still sitting upright, I’m startled awake again, as the coffee spills into my lap. The new odor of coffee, mingled with the already unpleasant fragrance of perspiration and urine, make me realize a morning shower in definitely on the “mandatory” list As I drag toward the shower, I hope that it will not only wash away the pungent smells, but perhaps it will soothe the aching muscles, and breathing the steamy air will help my still congested nose and lungs.

I forage a pile of dirty laundry, sniffing out my cleanest dirty towel, and search in the closet, hoping I can find something there to wear, something that is clean or at least not too dirty, that will still stretch around my ever-expanding girth. I shower, dress and head my car out on the twenty-mile trip to the ENT. I stop for a soda and candy; I will need the caffeine and sugar if I don’t want to be overtaken by another unplanned nap.

As I drive, I try to recall the Dr. name. I’m not so good with names these days. I am frequently embarrassed by not being able to call the names of long-time acquaintances. Recently, at a social gathering, I even stumbled with the question, “What is your name and where are you from.” I did get my name right, but just couldn’t think of the name of the town I’ve lived in for the past ten years. My face burned with embarrassment, as I fumbled to answer such a basic question, while the inquirer backed away, her face apologizing for intruding into my stupor.

But, at last, I’m here. I’ve managed a shower, found something to cover my nakedness, and I’m here!! I will get my CPAP, go home, and sleep……….every inch of my body craves sleep, like an addict looking for a fix.

After satisfying the front desk with enough paperwork and insurance credentials to be granted entry to the inner cubicles, I was shown to an examination chair to await my results. If chairs come in sizes, this one was not “plus size”. However, the pain of the armrest digging into my hips helped to keep me awake, as I wiggled and squirmed trying to find comfort. I wouldn’t let an undersized chair spoil my delight in finally being here or intrude on my fantasies of an afternoon filled with blissful sleep.

An assistant poked his head in the door, and stated the results of my study weren’t here as scheduled, but announced he had called the lab and they were being faxed over. Would I like to watch a film about apnea while I waited? Of course I would, the chair in that room had to be more comfortable than this one.

A rather uninformative film ensued, one man had found relief with CPAP, another had opted for surgery; both lived happily ever after.

After about two hours of phone tag, the fax machine was finally spitting out my sleep study. I was handed a prescription. NO! What’s this, I protested, where is the machine!! You see, other than a shower, the only two items that had actually made it to my “mandatory list” for the day.... was get the machine…and sleep!!!

I was told I could have my prescription filled at the hospital next door, in the respiratory therapy department.

I swallowed hard against the huge lump gripping my throat and battling me for breath. The hospital door was at least a block away, uphill. Mt. Everest could not have loomed larger in my mind! I knew I would have to stop about halfway. I could sit for a moment on the brick retaining wall. Walking more than 50 feet made my heart pound so hard against my chest that I was sure the only thing preventing others from hearing every beat was the sound of my labored breathing. My feet, swollen and sore, my muscles cramping, I somehow found the willpower and strength to climb the hill, and weave my way along the corridors of the hospital until sweating and breathless, I presented my sleep study and prescription to the respiratory therapist.

I sat watching as she read it, calling others from their desk, they formed a tight huddle around my report “I can’t believe you haven’t already had a heart attack or stroke” she proclaimed!! As the three of them passed around my results, I found all of the comments almost as unsettling as those careless remarks made by the PSG on the morning after my sleep study. For a week now, I had replayed his words in my exhausted head every night. “Any RDI over 80 is life endangering. For you, sleeping without CPAP is potentially fatal” This information had made my pillow feel as ominous as a revolver in a game of Russian roulette!! But at last, I sat here in a room filled with those beautiful machines. I had made it!

Then, it was paperwork time again, and a sorrowful respiratory therapist told me they didn’t contract with my insurance carrier. She dialed the 800-customer service number on my insurance card and handed me the phone. I was admonished like a disobedient child by an agent, who demanded to know “Why I was at an ‘out-of-network’ DME” As I apologized and begged for her assistance, she went on to inform me that they would not honour the prescription written by the ENT. I would have to take my sleep study and prescription back to my referring primary care physician. Only the PCP could write the prescription, and he should send it with a copy of my sleep study to the insurance carrier. Then a contracted DME would send me equipment if all the necessary paperwork were in order. She quipped her final instructions with a hateful and indignant “You just can’t go around picking up medical equipment wherever you chose, and expect us to pay for it!”

All efforts at maintaining composure were lost. As I cried, exhaustion and frustration poured out with the tears. Fear again dominated my clouded mind, as I imagined suffocating in my sleep. While I wept, the RT was on the phone speaking with my primary care physician, relaying her concerns with my sleep study. Hearing her emphasizing the urgency of my need for CPAP escalated my fear to new heights.

So I drove home, exhausted, frustrated, terrified and feeling so very, very alone. Tears burned in my eyes, and clouded my vision, making it difficult to see the road, but I kept moving.

Back home, a call finally came from the nurse. The Dr. had arranged for a CPAP to be delivered and set-up before bedtime tonight. I could not have been happier if she had called to say I’d won a million dollar lottery. However, my adrenaline rush quickly gave way to humiliation as it occurred to me that someone would see and smell the hog-pen I now called home. The house now bore only a vague resemblance to the neat and tidy home I had always been proud to invite friends into. I forced myself to pick up one small area in the living room, closest to the front door, and then was struck with the realization that they would set up the equipment is in the bedroom. I moved down the hall to my dusty bedroom, littered with clutter, dirty clothes, and smelling of s sheets long overdue a wash.

After lifting the window to let in some fresh air, I stripped the bed of all but the bedspread, pulling it up to cover the bare mattress. Too tired to bend over and pick anything up, I kicked piles of musty towels and clothes onto the sheets, pulling up the corners to form a giant “hobo” pack.

Dragging that pink sheet filled with weeks of dirty laundry through the house, it stuck tight at each doorway I passed through. As I gave it one final jerk into the garage, that sheet, containing all the filth, and shame of what my life had deteriorated to, I collapsed into that great huge pile, and cried one last time. These were the sweet tears of joy, and relief.

Pam's Sleep Apnea Story

Sleep Apnea very nearly cost me my life. I was the first woman diagnosed with Sleep Apnea in the state of Missouri in 1989. The period from 5 years previous to my diagnosis is a vague blur of memories. I walked around in a sleep-deprived daze. By sheer will power I forced myself to care for my son. Because of this illness my marriage fell apart, ruined my 10 year teaching career, almost killed myself falling asleep at the wheel of my car, gained over 100 lbs. and developed a serious self concept problem. That is exactly how sleep apnea works. It comes upon you gradually; first the snoring and the interrupted sleep, the inability to concentrate, the weight gain, the extreme fatigue, the irritability until you are unable to recognize yourself when you look in the mirror.

I knew there was some kind of problem. I went to doctor after doctor. I was diagnosed with Hypothyroidism (a common secondary problem with Sleep Apnea). But still there was no answer to my awful haze of sleepiness. People did not understand the problem, many thought that I had just become fat and lazy, and even I started to think that maybe they were right.

While at my Grandmother's and with my Aunt one weekend, they experienced first hand the episodes of my non-breathing as I lay taking a nap on the couch. They were horrified and my Aunt found an article she had read about Sleep Disorders. I read the article and immediately knew that this was my problem.

I contacted my internist and practically forced him to set an appointment for me in the newly formed Sleep Disorder Clinic. The morning following the test the technicians could hardly believe the results. My findings were life threatening and forced even the Sleep field to take another look at their own conclusions. You see, back then, they felt that only men were possible Sleep Apnea victims. My case changed their minds.

They rushed to set me up with a CPAP machine, afraid for me to even go through one more night. I took to that airline like a duck to water. I slept 6 hours straight the first night, me the woman that had previously jerked awake at least every 45 minutes. I felt like Superwoman, able to leap small objects in a single bound!

It has proven to be a difficult process rebuilding my life. But with support of those who care about you, and your own courage, it can be done. My goal is to help others with Sleep Disorders get the help and the support that they deserve to live a long and productive life.

Trevor's Sleep Apnea Story

"SNORING AND APNOEA IN ENGLAND"

(Editor's Note: Trevor lives in England, where the word "apnea" is spelled "apnoea" and a doctor's office is referred to as his "surgery". His story, while uniquely his, is also universal. It particularly points out the impact that snoring and sleep apnoea can have on a relationship.)

I am a forty-two-year-old, single, divorced male. I could do with losing a few pounds, but I'm not particularly overweight and certainly not obese, factors normally associated with sleep apnoea and snoring. I have been a chronic snorer for as long as I can remember.

My earliest snoring memories are from my school days. At the age of eight I went to a school camp and shared a tent with seven other lads. My tent mates told me in no uncertain terms that I was a very loud snorer! I also shared a room at home with my two brothers, who both resorted to wearing earplugs at night. I had also noticed I was becoming very tired during the day, but had no idea it was related to my snoring.

My snoring continued to cause problems through my teenage years, but really raised its ugly head after I was married. It caused many marital rows and many nights in separate bedrooms. It was at this point I went to seek medical help.

I left my doctor's surgery after my first appointment with a prescription for hay fever tablets, which of course had no effect. After many more appointments my doctor advised me to have my adenoids removed. After recovering from a painful operation, I was devastated to find my snoring was as bad as ever. Anyway, one thing led to another and my wife and I finally divorced (I would be a liar to say this was entirely due to my snoring, but it did play a big part in the breakdown of our marriage.)

After a while, I met another girl and fell in love. Once again snoring became a big problem. I also became aware that I was increasingly tired, and would fall asleep at the drop of a hat. I fell asleep at the dentist's and while getting a haircut, but the worst was falling asleep while driving.

Time once again to seek medical help. I had by this time registered with a new doctor, and I duly made an appointment. I expected the usual response of "sorry, but there is nothing I can do for you". However, this doctor had actually studied sleep disorders, took interest in my case and referred me to the sleep clinic at Battle Hospital in Reading.

Once there, I was introduced to the sleep lab technician who explained the procedures I was to expect that night. These included being wired to monitors to record my sleep patterns, as well as sound and video recordings. I completed my night's sleep there and came back later to find out the results. At long last it was confirmed I had a medical condition and help was available! I can't begin to explain the relief I felt at this news, but it came too late to save my then relationship, which failed once again mainly to my snoring.

I was told at the sleep clinic that I had a condition known as chronic sleep apnoea, which caused me to wake up momentarily many, many times throughout the night. This certainly explained my tiredness during the day. I was then told about a machine that might be of some help --the CPAP machine.

I was invited back to the sleep clinic for a night's trial with CPAP. This was the night that drastically changed--and possibly even saved--my life. More and more often I was falling asleep while driving; I still can't explain how I escaped a serious accident.

I was shown this magical machine for the first time and was fitted with a suitable facemask; then I eventually fell asleep. What a wonderful feeling when I woke up I actually felt refreshed and felt like I had a goods night's sleep.

That was over four years ago now, and I have used CPAP every night since. It is rather a cumbersome machine, and a bit of an obstacle when forming a romantic relationship, but the benefits are enormous. I can actually start to read a book and get past the first page, or go to the cinema and see the end of the film. Driving is now a pleasure, rather than a life threatening experience. Best of all, I actually feel good!

 

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