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Laurie posted this as a comment to an article on Death from Sleep Apnea:

"Hello, My husband had obstructive sleep apnea. His cpap psi was set at 16 and he wore the full face mask. He died on Jan. 9, 2009, I am now alone with 5 kids.
My husband had his mask on faithfully every night since diagnosed. Yes, we fought with the insur. comp. too for long time before we got his tests and machine.
The night he died was so tragic. I went to bed a 1/2 hour late that night. I was in bed for 5 minutes and heard one loud choke sound and snoring. I thought his masked had slipped. I called his name and no responses. I got up and ran to him yelling his name and said whats wrong? He said back, "I don't know". Those were the last words he spoke. Our 9 yr old daughter wanted to sleep with us that night and i told her no, go down stairs to sleep with your sister. We live in old house and her room is right next to ours. My older daughter 16 yrs. heard my screams and called 911. They told us to move ime from the bed and he ended up right next to my daughters bed, the one I sent down stairs. Three of my kids and I carried him, he was 6'5" and 310lbs. I couldn't do it alone. My 2 older kids and I did cpr for approx 15 to 20 minutes. We live in a rural area. One emt showed up and started to bag him while I continued the compressions. Then the house was full. They worked on him almost an hour naked on the floor of my daughters room. All my kids but one saw, the one I sent down stairs. She was daddy's girl always on him playing. They defibralated him the entire time and tried to entibate him. They finally took him out to ambulance still naked and left. I was about 10 minutes behind ambulance and he was dead when I got there. He was extremely bloated in the stomach and purple and blue in the face. He had vomited in his tubes aswell. He was only 39 years old, he was the love of my life!
They did an autopsy and said his death was natural due to complications of sleep apnea. He had a heart attack but having no air killed him. They told me even if emt was standing right next to him they still could not have saved him. I am struggling with the loss of him and really can not fathom how lightly the doctors speak of this illness. They never checked his heart and it was enlarged from the apnea. He had been on cpap for approx. 5 to 6 years. Right after he died the company that supplied his equipment called and I asked them if their clients die alot and he said yes. I had never heard any of this in all the years of having it.
Please get checked out and make sure you get to see pulmonologist and cardiologist. Please ask questions no matter how stupid!
Laurie "

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I am sorry for your loss, but I want to thank you for sharing your story. It has caused me to rethink my CPAP use. I have mild sleep apnea, and my husband thinks the whole thing is something drummed up by the Dr's to get more money out of people. I have not been diligent in using my machine, because of your story I will give it another try.
We all are deeply saddened by your family tragedy. Although I dispute that CPAP patients "die a lot," there is no question that some do, of course. It is crucial that patients and their families advocate for themselves ... if having problems with a mask, demand that the CPAP provider help ... most good providers will re-fit the mask or provide a new one. Always, always stand tall and demand the best service for yourself.

May God Bless you and your family.

Steve Gardner
Executive Director
Reggie White Sleep Disorders Foundation
laurie, i am so sorry for your loss. your family is in my prayers. patricia
Willie , I have had three operations removing most of the things in my nose and throat but I still have problems and have to use my CPAP machine. I am not overweight and they still tell me to lose weight.

Wylie Miller said:
I am touched by your story Laurie. My heart goes out to you and your children. I have had sleep apnea for at least 30 years, treated for at least 17 (on my third machine). I have used CPAP faithfully for all that time. The doctors have labeled mine "severe" sleep apnea. I too am over weight and trying to lose the pounds. My experience tells me that doctors write off obese people. They act as if the only thing that can be done is for the patient to lose weight. My wife remembers that my patterns were just as bad when I was 40 pounds lighter. I am sure that being heavy exacerbates sleep apnea. But some how we need to convince doctors that more is needed than just to tell patients to lose weight. Even though surgery does not eliminate the need for CPAP, I wonder if lives could not be saved if patients who stop breathing more than 50 times per night (without CPAP) did go ahead and have the surgery to scrap the throat of excess fat and tissue. I know I don't feel I ever have an apnea when I am wearing my mask, but my wife tells me I do.
What a tragic loss. My heart goes out to you and your children. Thank you for sharing your personal story with us. It is bound to have a positive influence on those who haven't taken Sleep Apnea more seriously and will probably save lives as a result.
I'm so sorry for your loss. We don't understand why these things happen, but always remember God is with you and your family. I to have sleep apnea. I'm scheduled for surgery tomorrow(septoplasty). BCBS, as of yesterday, still would not approve the upp3(i think that's right) surgery in conjunction with the septoplasty. I guess they think they know more than the doctors. But I'm trying to keep the attitude that maybe that isn't what God wanted for me now.
Laurie I am so sorry to hear your tragic story. You, your kids and your husband are in my prayers.
Very sad story and one that moved me deeply. I join the others in thanking you for sharing it.

You mention your husband was using CPAP diligently at the time of his death. I wonder whether his machine was at the right setting and was being monitored for effectiveness from time to time. Yet another lesson in the importance of not just adopting the "set it and forget it" mentality. CPAP is not a spectator sport. It's something that involves monitoring and fine tuning all the time.
Dear Wylie,

I would not suggest that you go into surgery with the expectation that this will be a cure all. Many patients have surgery and are no better. Sleep apnea is a disease that is anatomical but also central, meaning your brain does not tell your body to breathe. Though the majority of patients have primarily obstructive sleep apnea, some patients actually have a component that is not due to obstruction. When the brain fails to send signals to the body to breathe, that condition is called central sleep apnea. Central sleep apnea cannot be fixed by surgery. Definitely weight loss is a critical aspect of your therapy but how much weight loss is necessary is dependent on how much weight you start out with. Again, weight loss will not make central sleep apnea any better. You should review the results of your sleep study with your doctor so that you have a better understanding of your disease process. If you have a component of central sleep apnea, it is possible that you may actually be able to find a machine that not only provides positive pressure, but one that gives you a breath if you do not breathe. B. Robles

Wylie Miller said:
I am touched by your story Laurie. My heart goes out to you and your children. I have had sleep apnea for at least 30 years, treated for at least 17 (on my third machine). I have used CPAP faithfully for all that time. The doctors have labeled mine "severe" sleep apnea. I too am over weight and trying to lose the pounds. My experience tells me that doctors write off obese people. They act as if the only thing that can be done is for the patient to lose weight. My wife remembers that my patterns were just as bad when I was 40 pounds lighter. I am sure that being heavy exacerbates sleep apnea. But some how we need to convince doctors that more is needed than just to tell patients to lose weight. Even though surgery does not eliminate the need for CPAP, I wonder if lives could not be saved if patients who stop breathing more than 50 times per night (without CPAP) did go ahead and have the surgery to scrap the throat of excess fat and tissue. I know I don't feel I ever have an apnea when I am wearing my mask, but my wife tells me I do.
Hi Laurie
I would like to offer my most sicere condolences to you and your children. What a horrible, tragic loss. Thank you for sharing your story, I will make sure everyone I know who has sleep apnea becomes aware of this risk.
Deb (Sydney, Australia)
Maybe my story can help someone. I had sleep apnea and then insomnia and heart problems for many years. In my case, it was caused from mouth breathing because I couldn't breathe through my nose well and I would end up on my back with my mouth open. I didn't have much money at the time, so I tied a pantyhose around my mouth and jaw and around my head to keep my mouth closed at night. Eventually I bought an elastic guard to sleep in that goes around the back of the head and around the mouth and jaw, and I put Vicks Vapor Rub under my nose to try to open it up so I could breathe. This helped a great deal, sometimes I still couldn't breathe, but at least I could sleep. However, when I gave up dairy because I found I had a sensitivity to it, immediately I could breathe through my nose clearly. After a little while, I could sleep all night without wearing anything. I feel so free! Also, I replaced the magnesium I was deficient in, and slept peacefully and my heart problems resolved. I still take magnesium, and if I miss it for a while I start to feel heart palpitations. If you are concerned about heart enlargement and congestive heart failure, magnesium, CoQ10, and taurine, along with fish oil and vitamin E, are very important, and I take them daily. Check 'congestive heart failure' on doctoryourself.com. When you can't afford a doctor, there are things you can do to help yourself. I now cannot say that I have sleep apnea, and I thought I would live with it the rest of my life.

I wish you the best,

Sarah

Cynthia Licharowicz said:
I too have heart enlargement, due to sleep apnea. I am currently not treated due to no insurance or job. i am thankful for every day i wake. i dont sleep alot. i am afraid all the time. I am so sorry for your loss. He was too young to go like that. i feel so bad for your kids.

I will pray for your family. cynthia
I'M SO SORRY FOR YOUR LOSS, SUCH A SAD TRAUMATIC LOSS FOR YOU AND YOUR CHILDREN

I HAVE ONE QUESTION FOR YOU HOW OFTEN WAS YOUR HUSBAND RETESTED? IF YOU HAD TO FIGHT YOUR INSURANCE COMPANY I WOULD GUESS THEY WEREN'T ALL THAT WILLING TO DO THE RETESTING

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