Hello & A Few Questions

DreamStalker wrote: With all due respect Chuck ... Selfdirected did have an order by his physician golf buddy.

He got a good deal on the consult, It only cost him a dozen golf balls.

It pays to have respect for curling irons, I was using one the other night before hosing up, to open up my nose for the night. I shoven it in too far and it brused my eye. It hurt worse than that cup of McDee's Coffee, I spilled on me in the car, while talking on my cell phone.

Be careful out there! Jim

GoofyUT wrote:I object to the manufacturers' patriarchical decision to bar users from accessing their data and settings. So, I have helped provide the keys to gain access to them. In the same way that I object to MacOS's closed architecture. But, I respect the fact that SDB is a SERIOUS medical condition and its diagnosis and its treatment ought to be confined to those who have demonstarted the competency to their state licensing boards to do do. Period.

Understand?

Chuck

NOPE! I don't understand or necessarily agree. (based on my own personal experience and from a huge number of postings I've read in the last 18 months)

I think SDB is a disorder that can/will lead to serious medical conditions if untreated. (not the way you phrased it)
In one word, the treatment for simple OSA is......AIR.
We ain't gettin' enough of it when we sleep and these machines keep our airways open. Some of us take more and some of us take less.
If the therapy was as dangerous as some would have us believe, the doctors and sleep labs would do a lot better jobs in their titrations and the DMEs and RTs would spend a lot more time with their clients. But, in so many cases I've heard of, they just hand them the machine and mask and that's it.

In many cases, we have no way of knowing the "competency" of the sleep doctors we have to deal with and in cases like mine, they're the "only game in town" or in a vast area.
As I've stated many times before, my sleep doc prescribed me at 18 cm with an additional 2 L of oxygen. He even suggested that I might have to have a "Roto Rooter" job done on my throat to let in even MORE pressure. Well, I tried 18 for less than an hour and decided to start at a lower pressure......and picked 10.....which turned out to be just about right (and skipped the oxygen altogether). NOW......please tell me what the ramifications would have been to me if I'd have left my machine at 18 cm. and not monitored my therapy? Would it have killed or seriously maimed me? I doubt it, but it would have made me a lot less enthusiastic about my therapy.....and maybe less compliant.

If it was the manufacturers that didn't want us to keep us from accessing our theapy results or control, they would not have been putting the results in the LCD screens and making the "secret access" so easy. These machines are much easier to set up than a laser printer.

The basic priciple behind the therapy is simple......the path to success can be more complicated.....as many of the forum members can attest to. That's why they end up on these forums.....looking for help they aren't getting from the "competent professionals" with their fancy framed certificates hanging on their walls..

"That which doesn't kill ya simply makes you stronger."

Good slogan.

Den

Look Den, here's the problem:

Sleep disordered breathing (SDB) is a very serious condition THAT CAN KILLYOU. Obstructive Sleep Apnea (OSA) is but ONE of the causes of SDB. CPAP treats ONLY OSA. To encourage folks to believe that they can solve their sleep-disordered breathing problems by hooking themselves up to an air-pump is not only folly, it's irresponsible and potentially deadly as well.

Now, I'm sorry if you believe that you ahve received other than competent, expert medical advice. You ought to take that up with your state licensing board. They DO make mistakes, and there ARE bad doctors out there, for sure. A lawyer would also be one to discuss this with, if you feel that you have been injured.

But none of that diminishes the fact that SDB is a gravely serious condition, whatever causes it. What causes it HAS to be accuartely determined by a competent medical professional, and after that cause has been dtermined, appropriate treatment has to be prescribed, again by a competent medical professional. That's the law, and that's the conventional wisdom as well.

It simply is NOT true that those who hook themselves up to a machine are, at the least, ahead of the game to those who are NOT diagnosed and appropriately treated. For example, those with CSR secondary to congestive heart failure, who mistakenly choose to hook themselves up, run a GREAT chance of killing themselves. I won't have ANY part of that.

Bad doctors don't mean bad medicine. SDB is NOT something to be addressed over a beer at the 19th hole. It should be appropriately investigated and treated in a medical setting. Doctors who do otherwise, or who do a bad job of investigating and treating it should be BUSTED!!!! But WE need to take SDB very seriously, nonetheless, and seek and demand the competent diagnosis and treatment that it warrants.

Chuck

But Chuck, more people have been killed or injured by NON-treatment of SDB conditions than by "bad" treatment. If what you say is true, then Kaiser should be prosecuted for....."something".

In order to prosecute someone like a doctor, you would have to be able to prove a "loss" of some kind. I haven't heard of any lawsuits resulting from a doctor prescribing the wrong amount of CPAP air pressure. If it CAN kill you, there must be evidence of that happening sometime in the past. YES? NO?

According to Peter Farrell from ResMed, the only way a CPAP can hurt you is if it fell on you.

Den

You're right Den!!! But I betcha that the case law is full of docs that FAILED to diagnose CHF-related CSR, and started poor, unsuspecting folk on CPAP and killed 'em!!

Regarding Pete Farrell, I know that he's ResMed's CEO, but tell me again, which med school did he graduate from????

Chuck

GoofyUT wrote:

Regarding Pete Farrell, I know that he's ResMed's CEO, but tell me again, which med school did he graduate from????

From Resmed's website (public information):

PETER C. FARRELL PhD DSc FTSE FIE Aust FAIM FAICD AM - CHAIRMAN AND CEO

is the Founder of ResMed Inc. and has been Chairman and Chief Executive Officer of the Company since 1989. Dr. Farrell was previously Vice President, R&D with Baxter Healthcare (1984-89) and Foundation Director of University of New South Wales Graduate School for Biomedical Engineering where he remains a Visiting Professor. He has over 30 years' consulting and executive experience in the medical device industry. He is a Fellow of several professional bodies, including the Australian Institutes of Management and Company Directors. Dr. Farrell is Vice Chair of the Executive Council of the Division of Sleep Medicine at Harvard Medical School and serves on the Board of Trustees at UCSD as well as the Health Sciences Advisory Board of the Dean of Medicine and UCSD's Jacobs School of Engineering. In 1994, the Australian Institution of Engineers awarded Dr. Farrell the honor of National Professional Engineer of the Year, and in 1997, he received the David Dewhurst Award (Biomedical Engineer of the Year) from the same institution. He was also named San Diego Entrepreneur of the Year for Health Sciences in 1998, Australian Entrepreneur of the Year for 2001 and US National Entrepreneur of the Year for Health Sciences for 2005. Peter was admitted to Membership of the Order of Australia in 2004. Dr. Farrell holds bachelor and masters degrees in chemical engineering from the University of Sydney and the Massachusetts Institute of Technology respectively, a PhD in bioengineering from the University of Washington in Seattle, and a DSc from the University of New South Wales for research related to dialysis and renal medicine.

I would say it's a safe bet there are no studies of how many folks with sleep apnea die. Afterall, they would have to review the causes of death for those with untreated apnea, and that would be impossible. But it makes me wonder how those people typically died -- what percent died of stroke, heart attacks, congestive heart failure, just respiratory failure, etc. Perhaps the causes of death weren't so simple to pinpoint as one cause. They may have died from conditions unrelated or made worse by untreated OSA. But this all tells me that it's important to get checked out, to not assume you have only sleep apnea. So again, it is wise to have your health monitored by a physician as well as yourself.

Or by mal-treated or self-treated SDB, Linda.

Good points tho! Thanks!

Chuck

How many times have we read on these forums about someone who's been treated (by licensed physicians) for depression (and other conditions) that in the end, it turned out to be sleep apnea that was causing the depression in the first place? These situations would clearly be mis-diagnoses.

SDB/OSA/CSA.....whatever you want to call it is a "condition" that leads to a LOT of the other deadly diseases.....some of which Linda (LDuyer) mentions in her post.
I'd be willing to bet money (figuratively speaking) that at some point in the future, they're going to discover that SDB/OSA/CSA is a root cause of or contributor to many of those health problems that people are dealing with.

Den

GoofyUT wrote:It simply is NOT true that those who hook themselves up to a machine are, at the least, ahead of the game to those who are NOT diagnosed and appropriately treated.

That statement is simply NOT true. Chuck, please be sure to put a disclaimer on those words. You are expressing your opinion and are not stating a fact. What evidence can you cite to support your claim? What research have you been involved in and what are your qualifications in the study of sleep medicine which enabled you to reach this conclusion?

Dr. Barbara Phillips, MD, MSPH is Professor of Pulmonary and Critical Care Medicine in the Departments of Internal Medicine and Preventive Medicine at the University of Kentucky College of Medicine. Dr. Phillips is board-certified in Internal Medicine, Pulmonary Medicine, Critical Care Medicine, and Sleep Medicine. She directs the Sleep Clinic and Sleep Fellowship at the University of Kentucky College of Medicine, and is Medical Director of the Sleep Disorders Center at Samaritan Hospital in Lexington. Dr. Phillips is on the Board of Directors of the National Sleep Foundation.

Dr. Barbara Phillips, Chairman of the National Sleep Foundation has been involved in years of study, is well-qualified and has stated:

Dr. Barbara Phillips, MD, MSPH wrote:Inappropriate CPAP is harmless. Untreated sleep apnea kills.

Please refer to the 7 pages of clinical sources, studies, physicians, etc. (pp.44-50) cited in reaching this conclusion. Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004 -

Chuck, to discourage folks from believing that they could solve their sleep-disordered breathing problems by hooking themselves up to an air-pump is not only folly, it's irresponsible and potentially deadly as well.

LDuyer wrote:I would say it's a safe bet there are no studies of how many folks with sleep apnea die. Afterall, they would have to review the causes of death for those with untreated apnea, and that would be impossible. But it makes me wonder how those people typically died -- what percent died of stroke, heart attacks, congestive heart failure, just respiratory failure, etc. Perhaps the causes of death weren't so simple to pinpoint as one cause. They may have died from conditions unrelated or made worse by untreated OSA. But this all tells me that it's important to get checked out, to not assume you have only sleep apnea. So again, it is wise to have your health monitored by a physician as well as yourself.

A friend where I went for on Thanksgiving, had younger twin brothers, they were probably 48 -49, not overweight or anything, didn't smoke, one of the twins died in his sleep last year, cause was thought to be OSA. His widow and 8yr old son were there also. The other brothers all had studies, all of them had OSA. Father also on the hose.

Wow, snoredog, that's sad. I wonder what the official cause of death was listed as, for your brother and others, whether it was respiratory failure or heart failure or what. I'm sure, as you said, OSA was the culprit. I'm so sorry for your loss. Your description shows just how often this can run in families.

And I don't think GoofyUT was disagreeing with the statement that "inappropriate CPAP is harmless, Untreated sleep apnea kills." Correct me if I'm wrong, GoofyUT. I think he meant that while in and of itself, inappropriate CPAP isn't harmful, some of the other related or unrelated health issues are. If you've got sleep apnea and also untreated asthma or diabetes or high blood pressure -- you're not going to die from inappropriately treated or use of CPAP, you're going to die of the other conditions which may go undetected or undiagnosed. And yes, treatment of sleep apnea can cure what ailes you because sleep apnea causes it. But it doesn't cure everything, and not right away. It would have been foolish for me to have started cpap illegally and not know I have my high blood pressure. I've been appropriately treated for cpap and high blood pressure, and while the blood pressure has improved during the two years of treatment, there is still a problem. Hopefully I wasn't misinterpreting GoofyUT.

Linda

Linda-

I believe that the point that Snoredog so appropriately illustrated was that one member of the family may have been suffering from OSA without having had it investigated, and ultimately succumbed to it. The remaining members of that unfortunate family HAVE had it investigated. My heart goes out to them for their loss, and I appreciate Snoredog's sharing this important story with our community.

While I do agree with the point that, failing to have SDB (and OSA) competently examnined by a medical professional brings with it the risk of having underlying causes for the SDB go unnoticed and untreated, often with catastrophic results, I DO NOT believe that CPAP treatment is entirely benign and bears no risk, despite what Babs Phillips may have ill-advisedly proclaimed. She is but ONE voice, her credentials not withstanding. I'll betcha that there are plenty of doctors who disagree with her. I certainly do.

What I worry about is, for example, folks like a dear friend of mine here on this board, who suffered from "silent" congestive heart faliure. Though s/he felt constantly weak, fatigued and out of breath, s/he might well have convinced him/herself that these symptoms were caused by his/her persistent sleep deprivation from SDB. A reckless individual might decide that "going on the hose" might fix him/her right up. And, if a little pressure doesn't work, maybe a little more will. And if a little more DOES work, maybe a little more than that will work EVEN BETTER! Until s/he is at a pressure that is provoking prolonged central events because of the undiagnosed Cheyne-Stokes Respiration that s/he might have been suffering from because of the undiagnosed "silent" CHF. And one day, s/he wakes up dead.

Here's what I know. The use of CPAP equipment is REGULATED by the FDA and is RESTRICTED to the use BY OR ON THE ORDER OF A PHYSICIAN. I'm still NOT cynical enough despite my 56 years to believe that this is entirely for economically-motivated reasons. I believe that such regulation is the case for a plethora of completely valid reasons, and once again, I'll have no part of the irresponsibility of telling visitors here that self-diagnosis and self-directed treatment is anything less than reckless and foolhardy. CPAP treatment is NOT innocuous and its dangerous for ANYONE to tell anyone else otherwise.

I know that my sentiments expressed here may be highly unpopular, but so be it. This is a VITAL issue that needs to be aired out. I remain gratfeul for your incisive posts, Linda, and for Snoredog's contributions as well.


Chuck

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CPAPopedia Keywords Contained In This Post (Click For Definition): hose, CPAP

WOW! I come back from a visit to the in-laws and find my post lit a powder keg! I really didn’t intend to do so. But it has brought out some useful discussion.

The medical literature supports patient self-titration via auto-CPAP. But the folks on the side of medically supervised CPAP therapy do have some good points. You do need to be sure there are no latent cardiac or neurological issues that might be the cause of the symptoms you are associating with OSA.

The week I asked my buddy, a Neurologist, to write me a prescription for CPAP equipment, I had completed an array of cardiac and internal medicine studies; which all came back within a normal range. Without this input he might not have been so willing to write me a prescription. But he is also concerned that many sleep labs are focused on the economic return to the owners/physicians and not the care of the patient. He likens them to the pain clinics that have become a favorite of the US Attorney’s office. This is not to say all sleep labs are disreputable, but you should be careful. Watch for those that require two studies, one for diagnosis and another for titration, and those who are associated with a particular DME provider. (These were his points to watch . . . so don’t flame me )

So for those who have a solid foundation for believing they are otherwise healthy, I say do your research and dive in. That said, I’m going to back out of this discussion and go back to the safer position of a lurker. My goal is to identify a proper pressure and a mask I can live with. (The Respironics ComfotGel and ComfortCurve are the leading contenders of the three I have been given.) Then I am going to try to get in a routine and deal with CPAP therapy like I do shaving; a necessary activity I don’t really enjoy.

I appreciate every response!

Sleep Well!!!

LOL!! wb, SelfDirected. Rather active message board, isn't it? Yes, it really is an interesting discussion from different viewpoints.

SelfDirected - accidentally Guested wrote:...he is also concerned that many sleep labs are focused on the economic return to the owners/physicians and not the care of the patient. He likens them to the pain clinics that have become a favorite of the US Attorney’s office. This is not to say all sleep labs are disreputable, but you should be careful. Watch for those that require two studies, one for diagnosis and another for titration, and those who are associated with a particular DME provider. (These were his points to watch . . . so don’t flame me )

I agree absolutely with your neurologist friend except on one point. I really believe if a person is going to have a PSG sleep study, it's better to have two nights of study -- one full diagnostic night, one full titration night. A whole night of actual study in a sleep lab is usually only about 6 hours anyway.

Data gathered for an entire night gives a better picture of what's really going on throughout a person's sleep, imho. And a much better look at the entire sleep architecture. Especially since the duration of REM cycles (when apneas and hypopneas are most likely to happen) normally increases, the longer a person is asleep.

Even more important, imho, the titration shouldn't be rushed. After all is said and done, most people are going to eventually receive a straight cpap machine blowing a single straight pressure at them. And unless there is something very unusual, the pressure the titrating tech comes up with is almost certainly going to be what the doctor prescribes. A full night of careful titration is MUCH better, imho.

I can understand why people, including doctors, might think, "It's just to get extra money that a two night study is done." Personally, I think that's the better way to do conduct a really thorough sleep study -- two full nights.

Most sleep labs probably don't have empty beds. There are waiting lists. They're going to make the same money every night no matter whether it's the same person coming back for a full night titration, or a new person coming in for a first night of data acquisition.

In fact...thinking about the other point your friend raised about some labs being closely associated with a single DME (which I do agree could be a red flag)...split-night studies might be even more profitable than separate two night studies for those outfits. Split night studies would mean a faster shuffle of new patients out the door and over to the DME to be outfitted. Over time, with new people occupying the beds each night, and machine rentals increasing.... hmmm.

SelfDirected wrote:So for those who have a solid foundation for believing they are otherwise healthy, I say do your research and dive in.

I agree.

Hope you sleep well, too!!! I think you will.