Patient Stories - 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 nonfunctioning 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 became involved in the A.W.A.K.E. Network of support groups and now work for the American Sleep Apnea Association. 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.

If you would like to contact Lauren or have questions about her story, TASlauren hosts the sleep apnea chat here on talkaboutsleep.com on Thursday evenings from 9 p.m. - 11 p.m. Eastern time. Drop by and visit! There are also additional sleep apnea chats available. Check our chat schedule for the full details.

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