To overlook sleep apnea--or to fail to ensure its effective ongoing treatment--endangers patients and their physicians alike. For the latter, the risks are both medicolegal and (in a capitated environment) financial.
--Legal precedent has already been established: in one case, with a jury verdict of $19 million.
--Care of the potentially catastrophic complications of untreated sleep apnea dwarf the costs of its definitive, timely care.
As to the impact on patients, they can express the hell of
living (and dying) with untreated or mismanaged sleep apnea much
better than can I. For this reason, I
present the following e-mail messages that were sent to me and that
appear on the Forum
page of The Sleep Site.
These messages speak for themselves. I believe that when reading them, physicians should ask themselves whether they have committed mistakes in their own practices similar to those made in these two cases.
The following series of e-mail letters was sent to me by a woman in Virginia who graciously gave me permission to reproduce them on The Sleep Site. Why is it important to share them with you? Because they illustrate all too vividly what severe, untreated sleep apnea can do to patients and their families.
Sleep apnea is a potentially dangerous condition. In the absence of effective treatment, it can kill people. However, it usually kills gradually, a bit at a time: with progressive complications and repeated intensive care unit admissions.
The following letters depict a tragedy that almost certainly could have been prevented by timely, appropriate outpatient care.
I really don't know where else to turn - my husband who is 69 years old and very overweight is having a problem with sleeping - about 5 years ago when he was in the hospital with dehydration and flu, he had an attack of apnea -stopped breathing and the doctors inserted a tube down his throat and put him in intensive care for three days which is the time he did not regain his facilities.
Everything seems to have gone well since then, he is still on high blood pressure medication, he had only one kidney - but other than this he seemed to be okay - now in the last two weeks he has gotten out of bed in the morning, come downstairs and falls asleep - most of the time while reading the paper, drinking coffee etc. He has fallen asleep on the toilet, on the side of the bed, etc.
Also he is experiencing a shortness of breath a lot - He used to snore before the apnea, but since then I have not heard him snore or gasp for breath while he is asleep. Right now it is 11:20 am and he has already fallen asleep three times each with a length of over 30 minutes. Sometimes talks or is not aware of where he is when he awakes - I need help -doctor's appt is two weeks away.
Dear Dr Clark - With my thanks to you for your quick answer to my questions and for your honest reply that my husband should be in the emergency room - I took him last Tuesday to the emergency room and they admitted him to the hospital immediately - they thought at first it was a heart problem - I thought it was a mini stroke - put him in a telemetry unit at first - he kept sleeping the whole time and about 1 am he finally stopped breathing and all hands were around his bed - he was then put in CCU and hooked to a lot of machines, etc.
He spent one day in CCU and then put him in ICU - the doctor said that his heart is damaged and that his lungs were really bad - that after his apnea episode 5 years ago that he had 5 more years of damage to the lungs. Guess he will be on the respirator for quite awhile. I do wish that I knew more about it. From what they are saying now, he could not breathe alone now at all.
But I do want to thank you for your quick reply - it meant a lot to me - I will keep you updated if and when he should ever leave the hospital.
I am in Va and only wish that I were closer to central Ohio - ...your letter was the help I needed - I thought that this was serious and that he should be seeing someone - many thanks -
I am sorry that I have not contacted you before this - today has been two weeks since my husband has been put in the ICU unit and still no light at the end of the road - we know he has sleep apnea and that when he entered the hospital his oxygen in the blood was at 63 percent - as I told you before he was incoherent at that time and we thought that he was having a mini stroke - the doctors at the hospital thought that it was his heart and after all was said and done they said yes - it was a very bad case of apnea -
Right now he had been intubated for 12 days and they finally removed that -tried him last night on a C-Pap and he was very agitated by that - they thought that it would be best to intubate him again, but he finally listened to them and decided that he would breathe well for everyone - today he seemed okay, he is still in a daze and says some things that are incoherent - They have a breathing mask on him and he is doing ok with that, but this evening they are going to try the C-Pap or Bi-Pap and see what that does - if he cannot tolerate these, then the ENT doctor will talk to us tomorrow and they want to do a trach on him which will help with the breathing -
My question is not, are they doing the right thing and going about it the right way?
Just wanted to keep you informed - my husband is going into the fourth week in the hospital now - he was in ICU for 15 days and then put in a unit called Stepdown - this unit is not as busy as the ICU - not as many doctors walking around and this was not good - one doctor was passing my husband's bed and saw he was blue and said he revived him there and they put him back in ICU where he stayed another couple days - Again he was put in Stepdown and he seemed to do okay, but they kept trying to get him to breathe on his own - sometimes with a soft mask and other times with the oxygen lines. After much talking they tried again with a Bi-Pap and the face mask was so bad - didn't really fit and he had sores all over his face and the back of his ears.
He is now in Telemetry and being monitored all the time - the reps from the C-Pap company came to the hospital yesterday and now he has a C-Pap that fits and that we will be able to rent for a year and then buy it.
He will be transferred next week to a nursing facility for rehab and then finally home - I am afraid that we will be looking at a total of two months by the time he comes home.
Believe me, this apnea is a terrible thing - people do not realize how dangerous it is to the point of being life threatening.
Thank you again for your kind words. --B.
Thank you for your reply - my husband spent another bad night in the Stepdown unit of the hospital - I was with him this morning when the doctor said that they are looking at a trach now - since the C-Pap and Bi-Pap didn't do so well for him - under normal times he is living with 85 percent oxygen in his blood - today it was in the 70's and before it was 60's - I do wish I knew more about this -
I am meeting with the ENT man later on today and will discuss the trach more in detail and find out what they plan if this does not work -They had mentioned the other operation, but he is 70 years old and they don't want to do a major surgery on him in his condition.
You asked about using anything I said on the web site and I think that if this would help anyone - anyone at all - that it would be good - I think that people should be more educated about Apnea and know the dangers of this -
I have almost lost my husband twice now on this hospital stay alone.
Thank you for everything. --B.
MAY 17, 1999. I just received the following e-mail letter. My heart goes out to B. What occurred was a needless death that was preceded by immense suffering. May B's kindness in sharing her painful experiences help protect others from similar tragedies.
I hadn't written in a while - had my husband in the hospital for so very long and they finally released him to rehab where he did not do too well. He came home a week and a half ago and never gained any strength - he died this morning of a massive coronary which was brought on by the apnea - this is a terrible thing and I hope that you have impressed people of the serious nature of this disease.
I felt so very bad that my husband had to endure so much in the hospital - even to the point of having a trach put in only to have nothing help in the end.
Thank you for all your good thoughts. --B.
[I received the following from a woman who fortunately "stuck to her guns" and insisted upon getting a diagnosis rather than pills. Physicians who turn to prescribing antidepressants whenever patients complain of being tired, take heed. Sleep apnea is common and dangerous. It also is easily diagnosed and treated. To miss this condition is serious and not consistent with prevailing standards of care.]--
I want to tell you a story of how neglectful some of the doctors are when it comes to diagnosing sleep apnea.
I am a female, age 65 and strong and healthy and active and do not look much over 50. I like to travel with the younger crowd and come from a family of strong German stock with no disease in the family line. They all are dying in mid to late 80's.
I recently was diagnosed with sleep apnea after a night in the sleep clinic in Norfolk General in Virginia. I have a moderate case, stopping breathing 24 times an hour while sleeping on my left side. It is a moderate case but causing my severe symptoms. I am told it would have been more had I been lying on my back. My oxygen level dropped to 82%. After 4 hours of sleep I was awakened and put on the CPAP machine to finish the night . After only 4 hours of good sleep I woke to feel like a million dollars. There was the body I used to know , the one I have searched for for 13 years. The body I kept telling the doctors was there, somewhere.
My doctor admits he was at the end of his rope. He is the 4th doctor I have had and I swore I would stay with this one. So, he tested for thyroid disease and then the sleep clinic. It was only when I told him I was losing the healthy body I usually could feel at a distance and felt like I was preparing to die. I was so tired when I woke in the morning I was not sure if I was alive. A stuffy forehead headache. Staggering to get to the kitchen for a cup of coffee. When I talked I would have to stop to breathe because I would get out of breath. I was worried for my life and told the doctor "now is the time; find the problem or I will find another doctor".
He at first suggested I try Prozac. I had come to see him so many times with no problem he could find and with the files of the other doctors, he had come to feel I must be depressed or a problem . I refused and stood my ground. It worked and now I will watch my health myself more often. I don't have another 13 years to waste.
Now, I have a machine at home and most important is the heart. This was my big worry. I now have a heart that does not beat so hard that I can feel it all over my body, Now I have normal blood pressure. Now I have the energy to exercise and swim and walk without being so exhausted I have to go to bed. I have a problem now of forgetting all the old times when I would stop work and go take a power nap. I usually felt better because it was most likely the best sleep of the day/night. It is like looking over my shoulder expecting to see something following me and it is called exhaustion and now it is not there.
I feel wonderful and recently, for the first time, did my share of driving a 12 hour drive without going to sleep at any time during the trip. Usually I slept day and night while my husband had to drive.
I wish I could tell more tired people that the day problem has a night cause. I am well informed but I did not know this.
Wherever this is going, you may quote me. ----B. H., Sligo, North Carolina
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REGIONAL SLEEP DISORDERS CENTER
Accredited by the American Sleep Disorders Association.
Robert W. Clark, M.D., Medical Director
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