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Why Gerry Isn't Treating Severe OSA
saw this posted on Gerry Dackerman's wall:
"I was diagnosed with severe apnea - 71 episodes an hour. I tried two different Cpaps without success - never making it through a full night with the mask. One problem is that I sleep on my stomach, another, the therapists who fitted the masks seem only interested in delivering equipment and making an exit, and finally, the two doctors I saw treated me with zero empathy. I gave up."
"I was diagnosed with severe apnea - 71 episodes an hour. I tried two different Cpaps without success - never making it through a full night with the mask. One problem is that I sleep on my stomach, another, the therapists who fitted the masks seem only interested in delivering equipment and making an exit, and finally, the two doctors I saw treated me with zero empathy. I gave up."
Views: 78
Replies to This Discussion
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Permalink Reply by Judy on
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Well, Gerry, welcome to the forum. You obviously haven't totally given up because you found us and you're here. Good on you. Tho I certainly can understand where you are coming from!!! I cut my nose off to spite my face for 8-10 years after I was Dx'd w/OSA back in 1996-1998 because of a sheister DME supplier and no support, advice or encouragement.
Most of us end up in these apnea support forums BECAUSE of lousy local DME suppliers and lousy sleep doctors. The manufacturers research and develop these wonderful xPAPs and the rely on the sleep doctors, sleep lab and local DME suppliers to provide the education and support. HA! The sleep doctors and sleep labs rely on the local DME suppliers to provide the education and support and too many local DME suppliers dodge their responsibilities, take the money and run. (Our Daniel Levy here in the forum excepted).
You CAN sleep on your stomach w/CPAP and mask. And there are ways around these sheister local DME suppliers. It just takes a determined, innovative patient w/the help of good apnea support forums like this one. Why not start a new thread titled something like "Tummy Sleeping W/CPAP and Mask Help" or something similar so that those who have been successful w/that particular issue will see and respond.
This is a fairly new forum and if you don't get a response here I've read repeatedly of successful tummy CPAP sleepers at apneasupport.com and at cpaptalk.com
I would suggest trying a good down pillow. They plump down pretty thin and you can punch them into any shape you need. Lay close to the end of one and punch a dent for your mask to lay in. Hang your hose above your head so you have the freedom to roll from one side to the other. You won't master the technique and be a successful tummy sleeper right away w/CPAP and mask. It can take some practice and finding the right, relatively leak free mask but there are plenty who are successful at it. You just have to find them and ask what "secrets" have worked for them to successfully do so.
Good luck!!!
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Permalink Reply by The SleepGuide Crew on
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as usual, a very nuanced and thoughtful response from you, j n k. we've taken the liberty of posting it at http://www.sleepguide.com/group/newusergroup/forum/topics/frustrate... as a new discussion in the New Users Group, since it will certainly be helpful to many new users for a long time to come...
j n k said:If the doc gave Gerry the diagnosis, the doc did his job. In my opinion, few sleep docs have the time, the patience, or the emotional makeup to be able to show much empathy. Many of them are like cops that way. They love people, but they have a job to do, and it is more important they do their job well than that we like the way they do their job. Once they've done their part in saving one life, they move onto to the next life to save--kind of like firemen. Sleep specialists have a lot of fires to put out these days.
Few people make it through the first few nights with the mask on all night. It takes baby steps. Many wear it for a few hours the first night, wear it for more hours the next night, until eventually they can make it all night with the mask.
The person who delivers equipment is the equipment delivery person, rarely an actual RT. They get beat up on verbally. So I try to be nice to them. And I don't expect them to hold my hand through the whole process. We've got Sleepguide and other communities for that, to do that for each other.
There are ways to make the therapy work. It takes some time and effort, but it can be done in virtually every instance, with a few extremely rare exceptions.
Here is my "tough love" statement: Giving up because we don't feel like we were treated well is counter-productive. I don't care if the pharmacist hands me my pills nicely or throws the bag at me from across the store -- if those pills are going to save my life, I'm going to take them. I don't say to myslef "I'll show them--I just won't take those pills!" No, I take the pills anyway, and live.
That CPAP machine may be the pill that will save Gerry's life if he has 71 events an hour. I understand discouragement. I've been there. I understand depression. Been in that ballpark, too. Sometimes it takes a little tough love for a friend to say: "What? Are you out of your mind? JUST USE THE MACHINE! I love you too much to let you turn your back on the one piece of equipment that may very well give you your life back!"
That would be the kind of tough love I would give Gerry if he was my pal. But I'm not sure tough love always works so well when it comes from strangers. So I guess my post simply is what it is.
If we can precisely define exactly what our problem is using the machine, though, we then are halfway there to finding the solution to each obstacle one at a time until we get the larger problem solved. Sleeping and breathing are worth taking a methodical appoach with, since improving them can have a profound effect on a person's quality of life. CPAP can save lives, but only if it is used.
We have to generate our own success. No doc or delivery person is going to do that for us. Yes, they should be more helpful. But the satisfaction comes from outliving them. :-)
jeff
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Permalink Reply by RockRpsgt on
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I believe that jnk said it all! As a tech I wish that I could completely walk everyone through the treatment. No matter what health issue you have commitment is the one thing that can't be prescribed. You have to commit yourself to a healthier life in order to be healthy.
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Of course you are right in many ways, jnk. BUT - I'm a spiteful ole broad. The DME supplier is getting paid extra to provide education, support and advice. that's part of their excuse for getting paid so much more than the actual cost of the equipment thru an online DME supplier. I"m paying the DME supplier - makes no difference whether out of pocket or via insurance. Therefore I want my piece of flesh. Yes, I'll find a way to make CPAP work for me - for ME. But I'm gonna do my best to take the sheister down. I'm going to file a complaint and I'm gonna bad mouth the sheisters every chance I get. If our Daniel Levy can do it - so can the other local DME suppliers out there.
Nor do I accept your "excuse" for the sleep doctors. If your "excuse" were to hold up, they would in all fairness be charging considerably less than they do - OR - providing the personnel, an NP or PA or RT, with the knowledge and experience to consult w/the patient, explain their study results, etc. to justify some of the fees they charge. It seems all too often the more the sleep doctor charges the more likely he's one that never consults w/or sees the patient and just provides the data and recommendation to the referring doctor and laying it in the referring doctor's lap. If Drs Park and Krakow can provide caring consultations and information to their patients so can't the rest of the so-called sleep specialists out there.
We can keep paying overpriced fees for sub-standard care or we can speak up and demand more.
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Permalink Reply by Sandra Limbach on
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Not all sleep doc's are uncaring but they do devote a lot of time trying to help others see that getting help is better than doing nothing. In many cases it is essential. My daughter did not like cpap in any form! but through the help of a Dr. that works with these kinds of issues and a slow baby step approach she started by watching tv with it on for an hour and worked up to sleeping all night with it. It was not easy but she had no choice..
What I have found here is a great group of individuals who care about this diagnosis and give a lot of themselves to help others work through there issues.
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With respect can we put all of the blaim on the sleep doctors? If a PCP orders a sleep study knowing that they are probably going to be the one that has to deal with the patient is it not their responsibility to know about what they are ordering? If I break my arm for instance. 1st I go to emergency care, then they send me to a specialist, then I go back to my PCP for follow ups(baring surgery). It is my PCP's responsibility toknow how to treat my ailment even though a specialist Dx me. Right? I do understand that the system is not perfect. Not for you or me. This high demand for studies has put myself and I am sure other techs in some very demanding positions. ie 3 patients 4 patients 1 tech NIGHTMARES. When my PCP orders anything for me he better damn well be able to explain it to me. If not it is as much my fault if I don't make him, or find out on my own. As patients complaining about it on an individual basis does nothing. It is sites like this one that need to as a whole demand accredited labs, certified sleep doctors, and techs with consults and study briefings. Then follow up to make sure that they are following the guidelines set for us patients. As individuals we can yell,scream,and bitch all we want to no avail, but united we stand and are heard as one very lloud voice.
Judy said:Of course you are right in many ways, jnk. BUT - I'm a spiteful ole broad. The DME supplier is getting paid extra to provide education, support and advice. that's part of their excuse for getting paid so much more than the actual cost of the equipment thru an online DME supplier. I"m paying the DME supplier - makes no difference whether out of pocket or via insurance. Therefore I want my piece of flesh. Yes, I'll find a way to make CPAP work for me - for ME. But I'm gonna do my best to take the sheister down. I'm going to file a complaint and I'm gonna bad mouth the sheisters every chance I get. If our Daniel Levy can do it - so can the other local DME suppliers out there.
Nor do I accept your "excuse" for the sleep doctors. If your "excuse" were to hold up, they would in all fairness be charging considerably less than they do - OR - providing the personnel, an NP or PA or RT, with the knowledge and experience to consult w/the patient, explain their study results, etc. to justify some of the fees they charge. It seems all too often the more the sleep doctor charges the more likely he's one that never consults w/or sees the patient and just provides the data and recommendation to the referring doctor and laying it in the referring doctor's lap. If Drs Park and Krakow can provide caring consultations and information to their patients so can't the rest of the so-called sleep specialists out there.
We can keep paying overpriced fees for sub-standard care or we can speak up and demand more.
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Permalink Reply by Duane McDade on
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I just had a Patient who did the same thing last night. He Had severe OSA, but wanted to sleep on his stomach, with a Full Face mask! Whew! After Suggesting that he might be able to sleep on his side or back, he refused and told me he only sleeps on his tummy. Well I did every thing I could, The CPAP Pillow was used, 4 different full face masks, nasal pillows with a chin strap, The story of my life and work, (That works with my wife and friends) but he did not even fill one 30 second epoch with 15.5 seconds of sleep. When his time was up he complained of neck pain. This is not a joke. I'm going home. bye bye sleep guide people!!!
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Permalink Reply by Steven Y. Park, MD on
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j n k,
Thanks for the link for the pillow. It sounds like a good option to try for some people who like to sleep on their stomachs. I clicked through to his e-book sales page which sounds interesting. I think I'm going to order it to see what he has to say.
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