Patient Stories - Mary's 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' nitroglycerin 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. Nighttime 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 honor 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 setup 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 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.

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