"Ginny, I so agree with your DME frustration. I still haven't gotten billing for my original Wisp. I've since gotten one cushion & am calling this next week about another new one & frame. I too don't like not having extra…"
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Lee Dryden posted a discussionSleeping with CPAP blog post
Hi,Here is a new blog post on the debate over veterans receiving sleep apnea coverage.http://sleepingwithcpap.blogspot.com/See More
Ginny Edmundson replied to ZolliStar's discussion Wisp nasal mask part for free: Size petite"I also have the petite and large that someone can have!!!"
ZolliStar posted a discussionWisp nasal mask part for free: Size petite
This isn't the headgear, only the nasal part. I won't be using it and hate to let it go to waste.Anyone want it? If so, contact me privately.See More
Mary Z replied to ZolliStar's discussion What's the Right Machine?"Zollistar, the more I learn about sleep apnea the more I find I do not know. At least research is ongoing- there's a lot of money in the field.
You're right- there are differences in how each machine senses and treats an…"
RockRpsgt replied to ZolliStar's discussion Beating Sleep Maintenance Insomnia"Not a problem, Z. It's important to know and can take a minute to wrap your head around. I know it did for me. Very few sleep disorders fall into a "breathing disorder" catagory.
"
ZolliStar replied to ZolliStar's discussion What's the Right Machine?"Dear Mary,
Thanks for the clarification that good sleep and apnea are probably two different things. I'm still grateful to Terry Vella for pointing out that sleep apnea is a breathing disorder, not a sleep disorder. That opened my eyes and now…"
ZolliStar replied to ZolliStar's discussion Beating Sleep Maintenance Insomnia"Thanks for the clarification, Rock.
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Mary Z replied to ZolliStar's discussion What's the Right Machine?"Zollistar, if you haven't seem this video by Dr. Krakow take a look. It's about ASV.
http://www.youtube.com/watch?v=7fMki3KFRgg"
Mary Z replied to ZolliStar's discussion What's the Right Machine?"Dx is diagnosis and CSA is central apnea.
As to whether people sleep better with an ASV, well if you slept well before ASV I'd imagine you would continue to sleep well. I slept well on all modes, but found none that worked for me…"
RockRpsgt replied to ZolliStar's discussion Beating Sleep Maintenance Insomnia"Apnea is not a breathing disorder. It actually has very little to do with pulmonary function short of causing O2 desaturations. Sleep apnea is a neuromuscular sleep disorder. Central sleep a[nea is a breathing disorder."
"I've confirmed that our next meeting is Thursday, June 27 at 7 pm."
Lee Dryden posted a discussionSleeping with CPAP blog post
Hi,This post is about sleep apnea and blood sugars. Thanks for reading.http://sleepingwithcpap.blogspot.com/See More
ZolliStar replied to ZolliStar's discussion What's the Right Machine?"Thanks for this, Mary.
Worse comes to worse, I'll buy a used machine from Second Wind. First I'm going to see if I can get my doctor to prescribe one.
Maybe this is the final answer. Meanwhile, I'm surely happy to have…"
Mary Z replied to ZolliStar's discussion What's the Right Machine?"Zollistar, I think the ASV is hands down the best machine. It took me four years to get hooked up. Because of lingering depression and continued day time sleepiness with a high AHI my doctor suggested a night in the lab with an…"
ZolliStar replied to ZolliStar's discussion What's the Right Machine?"May I ask two dumb-dumb questions? What do "Dx" and "CSA" mean?
And here is a not-so-dumb-dumb question (I hope!): From your experience, do people sleep better using an ASV machine?
I look forward to your answer.
"
RockRpsgt replied to ZolliStar's discussion What's the Right Machine?"You will most likely not be able to get insurance approval for an ASV without a Dx of CSA. I think that saying that an ASV breathes with you is false. ASV does however provide a better breath support and algorithm for auto use. The newer ASV units…"
Mary Z replied to ZolliStar's discussion Beating Sleep Maintenance Insomnia"Zollistar, what a good idea! The music is nice and relaxing on some of them."
Meeting the Inventor of CPAP, Colin Sullivan
CPAP was a $2.3 billion business last year, is a household word for millions of Apneacs around the world, and deserves credit for saving the lives of countless souls. But there Colin Sullivan was tonight, the inventor of CPAP scrounging around for an available seat and eating from the same walk-up buffet of fried chicken and jambalaya as the rest of us at a routine sub-committee meeting of the American Thoracic Society. I wouldn't have noticed him otherwise, but my dinner companion pointed him out and I made my way over to introduce myself and thank him on behalf of myself and the entire CPAP patient community. "It's really an incredible device when you use it properly," I said.
Colin Sullivan gave a slide presentation at the dinner I mention above. I took many pictures, many of them of never-before seen materials from the invention of CPAP
"Yes, it really is, isn't it?" Dr. Sullivan responded, graciously ducking out of taking credit for his invention, instead seeming to marvel with me over it as if it were something that had always had a life of its own. Then I asked if it were alright to get a picture with him, which he happily agreed to. I expected him to be okay with that. What I did not expect was when he pulled out his own camera and asked if he could get a picture taken of the two of us with his camera. It then occurred to me that as star-struck as I was with him, having introduced myself as the founder of a popular Sleep Apnea forum for patients, he had a little bit of the same regard for me. For Dr. Sullivan, it is and always has been all about the patient.
In 1979, the only treatment for Sleep Apnea was a hole in the neck, which had quite a chilling effect on the number of people who self-identified as Sleep Apneacs. Dr. Sullivan tells the story of how since there were so few patients, he had to use himself, his lab partners and their wives as guinea pigs for his crazy new idea to use positive airway pressure to splint open the airway. Once he had demonstrated that CPAP worked, more and more people stepped forward and advocated for themselves to get the machine. It was the patients then, just as it is the patients now, he said, who were their own advocates for getting their doctors to prescribe CPAP, and for improvements to be made to CPAP to make it more comfortable to use. He doesn't seem to give a hoot about medical protocol, procedure or propriety unless it is in the service of patients.
I saw Dr. Sullivan's shoes. They look more like something picked up off the rack at Sears than Ferragamos. You would expect the man responsible for saving countless lives and bringing about a multi-billion dollar industry to be extravagantly wealthy. He's not. The scuttlebutt at the dinner was that the folks who made millions commercializing Dr. Sullivan's invention didn't really share the wealth. Dr. Sullivan isn't bitter, though. Knowing that patients like me are living better lives than we otherwise would but for his existence seems to mean something to him. And that might explain why he wanted that picture of himself with me at least as much as I did.
Colin Sullivan, inventor of CPAP and Mike Goldman, founder of SleepGuide.com Sleep Apnea Support Forum
Colin Sullivan gave a slide presentation at the dinner I mention above. I took many pictures, many of them of never-before seen materials from the invention of CPAP
Tags: colin, cpap, inventor, sullivan
Views: 945
Replies to This Discussion
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Permalink Reply by Mike on -
photos posted here: http://www.sleepguide.com/forum/topics/colin-sullivan-slides-how-he
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Permalink Reply by Paul Schricker on -
Nice article. He seems like a very interesting man.
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Permalink Reply by St. Chris on -
Awesome, Mike. I'm delighted that you could thank him on our behalf.
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Permalink Reply by Sharon Fine on
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What a wonderful, humble man. I work with doctors, and they seldom are that humble. I, too, am a CPAP user. I was fortunate enough though to have an excellent physician that suspected the problem and ordered the test. I LOVE my CPAP, and don't even lie down for a nap without it being in use.
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Permalink Reply by Charles Morgan on
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Thank you so much for sharing your humble insight into this wonderful man and his genuine concern for revealing not only the truth about an invisible death but creating the CPAP itself to overcome this unneccessary early death of so many. I have been on CPAP for 5 years and I am forever thankful and so blessed to have known this story. Dr Sullivan one of the truly good guys in this world.
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Permalink Reply by Mary Z on -
Thanks, Mike. I only wish CPAP had provided for a comfortable retirement for the good doctor.
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Permalink Reply by denise exhausted on
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Wonderful man.I wish he could invent a mask that would fit my particular compromised anatomy. A custom made mask that would save a patient with a missing jaw bone from having a tracheostomy to breathe during sleep. I do well with cpap/bipap but not with the masks that are available.I have a closet full of unusable head gear and masks because I need a mask or headgear that does not depend on support from the lower jaw. It would save my life.
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Permalink Reply by Patricia Ann Shuff on
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I have the same problem & I have found 2 masks that I can use. Puritan has one that goes over the head that fits very well. The other one is on this website www.cpappro.com . This is an Oral unit & I love it. Nothing touches your face except the nasal pillows against the nostrils.
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Permalink Reply by denise exhausted on
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I can not thank youenough for this post, Patricia, I will definately look into your reccomendations. At this point I am so desperate I will try anything.You may very well have saved my life.
Patricia Ann Shuff said:I have the same problem & I have found 2 masks that I can use. Puritan has one that goes over the head that fits very well. The other one is on this website www.cpappro.com . This is an Oral unit & I love it. Nothing touches your face except the nasal pillows against the nostrils.
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Permalink Reply by Judy on
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Absolutely fascinating, Mike!!! THANK YOU. And, jnk, THANKS for the link to that ASAA article too. Whatta guy that Dr Sullivan. AND, frankly, I'm hoping that Scott Reed DOES post his early information as well!!! It obviously took many from various walks of research and medicine before it all came together to the PAPs we have today. I'd be willing to bet that a meeting and conversation between Scott and Dr Sullivan would REALLY be fascinating discussing those early days!!!
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