The Story of LE

[Ed. note: The story below was originally written in early 1997, soon after LE had her suspicions confirmed that she had sleep apnea. She is now much happier because her apnea is being treated successfully with CPAP.   For several years she was a volunteer leader of an A.W.A.K.E. group in the eastern United States and does what she can to help increase awareness of sleep apnea.   But the time period of which she writes was very difficult for her to endure. ]

Two MORE years of suffering due to misdiagnosis ...

February 1995 ... This is the month that I first spoke with Dr. B about the possibility that I had sleep apnea. I couldn’t remember the exact time frame, but when I saw Dr. R this week (January 1997), she looked it up in my medical records and found it documented in February 1995. That means that I have spent the last two years suffering needlessly, unable to function, virtually sleeping my life away. I am very angry at Dr. B. I feel like he stole these last two years from me by not evaluating me for sleep apnea in 1995, when I first begged him for help. I remember speaking with him about it and expressing my concerns, specifically mentioning to him that my brother had been diagnosed with apnea about a year before that date and that I was experiencing many of the same symptoms.

Before I reached a point of desperation and knew that I had to talk to Dr. B about how awful I had been feeling, I had known that something was wrong with me for several years. By the time I actually found the courage to ask for help, I was deeply depressed and severely sleep deprived. He wrote in the records that he ruled out sleep apnea, but what I remember him doing was an electrocardiogram in the office and telling me that I didn’t have apnea. Ignorant as I was about sleep apnea at the time, I trusted him that an electrocardiogram was the appropriate way to diagnose sleep apnea, and dutifully began taking an anti-depressant.

How could he make such a glaring mistake?? Since I have been diagnosed, I have done so much reading and research. I think I had every red flag possible--I was a textbook case with every symptom. I have learned that the only way to diagnose sleep apnea is with an overnight sleep study. Instead, he did an inappropriate test, and then proceeded to unnecessarily medicate me with an antidepressant which worsened my sleep apnea.

Has damage been done to my body? ...

I am terrified that some irreparable damage has been done to my body in these recent years by having undiagnosed and untreated severe sleep apnea. My understanding is that untreated sleep apnea can lead to cardiac and pulmonary problems. I will never know if my risk for these problems be higher for the rest of my life because of being untreated for those years. When I found out after the first sleep study that I had apnea, I was terrified. I became too frightened to sleep, terrified that I would die in my sleep. I would not go to bed, but would only sleep when I would fall asleep involuntarily in a chair or sofa. Considering that the little bit of sleep I was getting was so severely disturbed, it’s no wonder I could not function in my daily life.

The irony is that the doctor’s misdiagnosis of depression became a reality. I had become terribly depressed and I remember telling my husband around December 1996, that if I had to live like this for the rest of my life, I would rather die. I don’t think he realized I was serious, and I was being very honest. I began to have thoughts of suicide, and how I would finally be able to get some rest when I was dead.

Two years of strain on the family ...

I also look back on the last 2 years with so much sadness and regret, realizing the strain on our marriage and family as a result of this sleep disorder. 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 household tasks. Because I did not work outside my home, I was able to hide from him and from most everyone just how nonfunctioning I was. But it made things harder for us in our relationship, because he did not understand why I could not do simple things like clean, cook, and take care of the children. We had many bitter fights about this, and I blame Dr. B., 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 my asleep at all different time during the day, and were remarkably patient with me. But I feel a deep sadness and sense of loss that I slept through these last years of their short lives. In February 1995, my son was 5 and my daughter was 3 years old. Both of them were at such important ages for development during these years of my extended illness. I pray that I have not harmed their personalities and development 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, 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 I was devastated that I couldn’t be everything he wanted me to be and everything I knew they needed. But I also knew in my heart that he was right - I wasn’t a good mother to them, but I was powerless to do more.

Now I'm a different person! ...I

I’ve been like a different person since I began using CPAP, and 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 know they understand how deeply I love them. I hope that is enough for them to forgive me for these past years and 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 my heart in a special way and I cannot stop crying as I write this.

But the last two years (before diagnosis and treatment) were terrible ...

Until I knew just recently that I was going to be all right, 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 I was better and had my life under control again. I can never get back the wasted years, and that is so unfair.

My husband also suffered a great loss--he lost his wife, companion and friend, homemaker and mother for his family. This has been a terrible strain on our marriage, but we struggled through it together. I can’t express how hard it was for my husband to pick up the slack, and 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. After working long days at his job, he came home to an unresponsive wife 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 but most of all forgiving myself for not being able to function these past years. Even though it was not my fault, I have hurt others by being sick and that is hard for me to accept. I am coming out of this deep and overwhelming fog I have lived in, and I am experiencing a sharpness and clarity in my mind that can be painful. It is so wonderful to have energy and the ability to get through the day, accomplishing my goals and feeling really good. I still have a long way to go, but it amazes me how easy the "cure" is. My CPAP machine is becoming a prized possession. It is such a simple solution to such a complex problem. How different things could have been if only I had received it when I first needed it ...

(Editor's Note:  LE had surgery in 2000 and subsequently lost over 125 pounds. At that point, her sleep apnea improved to the point that she is now able to sleep without CPAP.)

Now that you have read the story of LE., if you would like to email your comments to her, click here: LE@apneanet.org. Please note that due to a change of jobs and a desire to spend more time with her family, LE is unable to respond to your comments, but they will be forwarded to her.

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