New and Frustrated

avi123 · Post by **avi123** » Sat Jan 29, 2011 11:22 am

monarch22 wrote:Hi all.
I was so frustrated and just felt like we were going in circles. I don't pretend to know everything about cpap and osa, but I have made an attempt to learn as much as I can. I've also made a commitment to put that mask on every night. I feel that I have every right to know how well it's working and if I have a machine that is capable of this, why not use it?? My question is how do I explain to this guy that seeing my results is not a bad thing. Isn't it good to have a patient wanting to take an interest in their treatment? Maybe he's just mad because I didn't go with the DME that is connected to the sleep lab and hospital he is with?

Hi, my thoughts are a bit different from most posters here. You have only been 7 weeks on the CPAP and your PCP got less than two statistical reports from the DME so far. So how could the Sleep Doc be legally responsible for his/her Rx order after such short treatment.

Another issue is this: while discussing the medical "advice" ("suggestions") that posters render here and in other chat rooms, with an MD in Internal/geriatric medicine and with another Doc who is a Pulmonologist, MD/ and also, an Internal medicine MD, I have learned that most of the "advice" given in such chat rooms is WRONG, and could easily do more harm than good! So were does it leave you?

By the way are your PCP, and " this guy" holding MD degrees?

mayondair · Post by **mayondair** » Sat Jan 29, 2011 12:02 pm

avi123 wrote:
monarch22 wrote:Hi all.
I was so frustrated and just felt like we were going in circles. I don't pretend to know everything about cpap and osa, but I have made an attempt to learn as much as I can. I've also made a commitment to put that mask on every night. I feel that I have every right to know how well it's working and if I have a machine that is capable of this, why not use it?? My question is how do I explain to this guy that seeing my results is not a bad thing. Isn't it good to have a patient wanting to take an interest in their treatment? Maybe he's just mad because I didn't go with the DME that is connected to the sleep lab and hospital he is with?

Hi, my thoughts are a bit different from most posters here. You have only been 7 weeks on the CPAP and your PCP got less than two statistical reports from the DME so far. So how could the Sleep Doc be legally responsible for his/her Rx order after such short treatment.

Another issue is this: while discussing the medical "advice" ("suggestions") that posters render here and in other chat rooms, with an MD in Internal/geriatric medicine and with another Doc who is a Pulmonologist, MD/ and also, an Internal
medicine MD, I have learned that most of the "advice" given in such chat rooms is WRONG, and could easily do more harm. than good! So were does it leave you?
Kathy, getting on her soapbox: Only 7 weeks? How long should Monarch wait? Monarch has every right to know how her therapy is going, her PCP obviously has no desire to do anything other than to sign off on a number provided by a sleep lab doc who has likely never seen Monarch and never will, and further, her PCP doesn't want efficacy data, and doesn't want her to have it either. So how will anyone know how her therapy is going?Could this easily do more harm than good? Kathy, not a doctor

By the way are your PCP, and " this guy" holding MD degrees?

HoseCrusher · Post by **HoseCrusher** » Sat Jan 29, 2011 12:07 pm

Avi, A qualifying question...

Do the medical professionals you chatted with (the Internal/geriatric MD, the Pulmonologist, and the Internal Medicine MD) suffer from sleep disorder breathing? And do any of them use xPAP therapy?

I am sure your group of medical professionals are very good at identifying the problems, but most medical professionals fall down when it comes to figuring out how to make a therapy work. Since most of the suggestions given here relate to how to get this xPAP therapy to work, I find it hard to believe that medical professionals would suggest that advice on helping someone stay in treatment would be considered as "easily doing more harm than good."

I am more interested in solutions. When you discussed the problems with complying to xPAP therapy, what suggestions did they offer?

mayondair · Post by **mayondair** » Sat Jan 29, 2011 12:10 pm

Oops wrong button, back to my soapbox: Only 7 weeks? How long should Monarch wait? Her PCP seems only happy to sign off on a pressure provided by a sleep lab doc, that Monarch has most likely never seen, and never will, then her PCP is not interested in any efficacy data, and doesn't want her to have it either, how will anyone know how her therapy is going? will this do more harm than good? Kathy, not a doc

Janknitz · Post by **Janknitz** » Sat Jan 29, 2011 12:44 pm

AHA, I think I missed the point in your first post, that this doctor is your PCP. PCP's have to know at least a little about everything, but they are NOT specialists in sleep apnea. And your PCP seems to know very little about sleep apnea, as shown by his offhand remark that weight loss will make the sleep apnea go away (happens in some, but not the majority, of cases, and only when there are no other contributing issues). Surprise, he's human, and (very) fallible.

Your doctor is truly threatened if you get access to data and a good understanding of sleep apnea, because he knows very little. How will he look to you if you end up knowing more than he? So his vanity and ignorance are dictating your therapy. A titration study is a single window in time in very artificial conditions. The pressure settings you get from that study don't always work out in real life, but your doctor has NO idea what to look at and how to prescribe a more effective pressure. So he covers it up by not looking at data, and not wanting you to do so either. Suppose you find that your AHI's are still too high or that you are having pressure induced centrals? He will have no clue what to do to fix it.

I think it's time to find a TREATING sleep medicine specialist, not one who merely makes bundles by reading data and sending you back to your PCP. And hopefully one that will work collaboratively with you to optimize your therapy for YOUR health.

As for keeping this PCP as your PCP, I sure wouldn't have enough trust to stay with him, but you'll have to make that decision for yourself.

avi123 · Post by **avi123** » Sat Jan 29, 2011 2:27 pm

HoseCrusher wrote:Avi, A qualifying question...

Do the medical professionals you chatted with (the Internal/geriatric MD, the Pulmonologist, and the Internal Medicine MD) suffer from sleep disorder breathing? And do any of them use xPAP therapy?

I am sure your group of medical professionals are very good at identifying the problems, but most medical professionals fall down when it comes to figuring out how to make a therapy work. Since most of the suggestions given here relate to how to get this xPAP therapy to work, I find it hard to believe that medical professionals would suggest that advice on helping someone stay in treatment would be considered as "easily doing more harm than good."

I am more interested in solutions. When you discussed the problems with complying to xPAP therapy, what suggestions did they offer?

Reply:

Hi crusher. To start with, I did not chat with but was consulting with the MD who did the Sleep Study study analysis of the Sleep Clinic's patients, in which I did it. This sleep clinic is owned by another group of about a dozen MDs in diff specialties, including the Sleep Doc . I know it that there is something fishy here. But it's an IRS's and not my problem. BTW, they are all MDs and don't employ physicians associates.

I came to the Sleep Study via a suggestion by the internist/geriatric in the Internal Medicine group who checked me. My sleep became fragmented in spite the sleep Rx that I was taking. At the same time I also came down with a Peripheral Neuropathy (the soles of my feet became numb). IMO, this Internist, MD saved my life by diagnosing my problem and sending me to his colleague at the sleep study clinic and to a Neurologist who checked my neuropathy and made me start on physical therapy of my damaged Vestibular system. Currently, I a have improved a lot and could even go back to a gym.

OK, let me go back to your question. I arranged an appointment with that "Sleep Doctor" who analyzed my sleep study. A consultation for which I had to pay $108 besides Medicare paying for it (that is why they are regarded as "consultants").

I and my wife (as a listener) spent a full hour with this pulmonologist/internist, MD. My main questions were these:

1) Explain to me how did you analyze my Sleep Study, how have you decided on the type of CPAP and to set the pressures?

2) Since my DME was ready to exchange my bare- bone S8 Escape II that I got from them under Medicare rental, with ANY other CPAP machine with no more payments from me, if I bring an Rx from any Doc from those two groups, I asked the Sleep Doc which CPAP/APAP to pick? However since I am a past Biomedical Engineer (M. Sc.), and a retiree with lots of free time, I like to fiddle with lots of output data. The more the better.

So we spent about half an hour for him to tell me what he sees in my Sleep Study graphs which he brought copies to give me. I learned the following:

a) It took him 10 minutes to read the 15 parameters graphs from the two nights, one night without CPAP, and the other night with and explained it me. He showed me that without CPAP I hardly had any deep stages of sleep especially REM. That my O-2 desaturation's (minimum 84%) occurred during accelerated heart rates periods, arousals, and lying on my back.

During the next night when I did it with CPAP on, every thing changed to the better. Lots of REM sleep. Min O-2 desaturation rose to above 90%, etc, all thanks to a titration of 6-7 cm H2O.

Knowing from his colleague, the internist/geriatric, that I don't suffer from any respiratory ailments (besides some COPD), he attributed all my current problem to Sleep Apnea and a standard CPAP could do the job of letting me sleep OK. He also said that checking my Sp O-2 with an Oximeter would be a waste of time in my case, if I do it on my own. This because the Desaturations during sleep typically occur during certain stages of sleep which I would not know how to read. REM sleep requires lots of Oxygen. Since I got lots of REM sleep with CPAP, it meant that my O- 2 was saturated OK. For those patients who manifest certain ailments involved with Oxigen deficiencies there are other tests to be done and by other physicians than sleep doctors.

b) When I asked him why didn't he specify a "nicer" CPAP he replied that it WAS NOT NEEDED. But now knowing that I like those data output graphs he gave me an Rx for S9 Elite (which does not do titrating). And, we decided that he, in addition to the internist, will also get a three month data downloaded from CPAP by the DME. If he sees anything wrong he would invite me to come. In addition, I have set- up an one hour appointment to see him in a year and also discuss then some new Sleep Apnea research in Israel.

As to the chance of me giving up CPAPing he said that he had patients, at younger ages but obese, who lost 20% of their weight and those who had no fat left in their throats managed to get off the CPAP.

Crusher, I am not sure if I replied to your questions but since I like your posts and also corrected my mistake of a 20 cmH2O pressure could be compared to the gradient of 500 feet elevation to sea level, and not 5,000 feet as I calculated.

But, I suggest to the OP to take time and convince the Doc that he/she could be trusted to act as a clinician to change pressures.

***********************************

janknitz, I agree with you about trusting a PCP.

In the case that posted above I made sure that I saw credentials of something like this:

M.D., F.C.C.P.

INTERNAL MEDICINE & PULMONARY MEDICINE

(I took out past schooling)

Fellowship: Pulmonary Medicine, N.Y.U., NY

Membership:

Alpha Omega Alpha, Honors Medical Society
Fellow, American College of Chest Physicians
American Thoracic Society
American Academy of Sleep Medicine
North Carolina Medical Association
Wake County Medical Society

Board certified: Internal Medicine, Sleep Medicine, and Pulmonary Diseases

Dr. XXXXX practiced Pulmonary and Internal Medicine for three years in central Massachusetts
prior to joining XXXX in 1991.

HoseCrusher · Post by **HoseCrusher** » Sat Jan 29, 2011 3:47 pm

Avi, You should feel very fortunate that your doctor explained what was going on with your sleep study. Many people are here because their doctors simply said that they had a problem and handed them a machine to fix it. When they ran into problems using the machine, they found little help from their doctors. This web site exists because some people figured out some solutions and felt free to pass their information on to those who are struggling.

Your doctor is basing his evaluation upon two studies done in the sleep lab, and looking for some confirmation from the data from your machine, and your report on how well you feel. My opinion is that the sleep lab is not a natural setting, and while it is good for diagnostic evaluation, it is not representative of how you sleep at home. The xPAP machines only look at air flow. The algorithms for air flow are good, but you are still looking at only one parameter. If you add a pulse oximeter to the mix, you now have 3 parameters. Still not as good as a sleep study, but better than basing your decisions on a single parameter. The fall back position of the doctor is how you feel, but the effects from "substandard" treatment can take a long time to surface. If you trust your doctor and don't find any information otherwise, then accept that you don't need a fancy machine. BUT, if questions come up, then it may be time to argue with your doctor - or take things into your own hands.

If you have eliminated all your symptoms by using CPAP at 7, there is no need to do more.

On the other hand, others don't have the same degree of success, and by reviewing the data from their machines are able to figure out why, correct the problem, and get on with their lives.

In my case my cardiologist suggested the sleep study. He is interested in pulse oximetry data, so I provide him with lots of that data. As he reviews it, he shows me what is important and what isn't. He isn't a sleep doctor, and I don't have sleep deprivation issues, so his emphasis is on O2 levels and heart rate changes. He could care less what my AHI is, or how many arousals I had during the night. He is the one that assisted me in setting my pressure.

After the discussion with the sleep doctor, I was sent home with a machine set for pressure ranging from 4 - 20. They felt that a second night in the sleep lab was not needed because the machine would automatically determine the pressure I needed. I had several problems at this setting, and did my own study to determine what pressure I needed. With the help of my cardiologist, I arrived at where I am today.

I "discovered" this site while I was in the middle of some of those problems, and have found the advise given here to be most helpful.

My attitude toward health care is a little different than a lot of people. I feel that it is my health that I need to take care of. Since I am not trained in medicine, I hire a team of professionals to advise me. If one of my doctors doesn't perform according to my expectations, I fire that person and offer the job to a doctor that fits my qualifications. In this case, the sleep doctor evaluated the data and told me that I had a high enough AHI along with some desaturations that a diagnosis of OSA would fit. My cardiologist set the performance goals, and my Respiratory Therapist (who also uses xPAP therapy) and this group help me reach my goal. My cardiologist has an excellent understanding of what the problem is, but doesn't have the practical knowledge to detail how to overcome the problem. Finding a group of people that have similar problems gives me a "sounding board" to bounce ideas off of.

In a perfect world, I think sleep doctors would give much better service to their patients if they were forced to use xPAP therapy themselves. Their excellent diagnostic ability would then be combined with an understanding of how the therapy works and what the problems are that most people run into. This combination would provide excellent service to the community.

robysue · Post by **robysue** » Sat Jan 29, 2011 4:53 pm

HoseCrusher,

I want to say thank you for publicly writing a very prominent sentiment that keeps running through my sleep deprived and much addled brain in my now four-month-long struggle to make xPAP work:

In a perfect world, I think sleep doctors would give much better service to their patients if they were forced to use xPAP therapy themselves. Their excellent diagnostic ability would then be combined with an understanding of how the therapy works and what the problems are that most people run into. This combination would provide excellent service to the community.

I am so frustrated with my doctors and PAs and other medical professionals telling me that I should be feeling better by now. That when we (meaning me, at home, alone in my bedroom at night, every night all by myself) try the next change of prescribed therapy, things will get better. That what I'm describing the current issues about what's fragmenting my sleep now that I'm using the xPAP, those issues so oftent don't make sense to them---and of course, not a one of them has ever used an xPAP machine for even ONE night of their life.

My (usually excellent) PA thinks I need some kind of counseling to deal with my lack of adjustment. I think I need a patient support group and someone to share my frustrations with in person with who actually USES a hose on their nose every single night and didn't take to it like a duck to water ... Unfortunately in spite of the fact that the literature in the doctor's office specifically mentions "speak to us about patient support groups", when I asked, I was told (after the staff did a search) there was no CPAP-support group they could locate in the greater Buffalo, NY metro-area. Now Buffalo isn't Podunksville (yet), so you'd think there would be something----OR you think they would have had the good sense to have NOT put that language in the literature that's left around the office for patients to read.

And as great as this site is---and it's been a life saver to me in many ways---I'm at the point where I feel the need to actually meet another person who is struggling with adapting to xPAP therapy FACE to FACE. And I need to meet another person of normal weight who has been diagnosed with OSA in PERSON. Because all my personal friends, relatives, and acquaintances with OSA are overweight and had little or no trouble adjusting to sleeping with the machine. And I'm tired of feeling so lonely----like I'm the only person on the face of the earth who is skinny, has OSA, and has had serious problems adjusting to being a hosehead. I know (from this board) folks like me are out there. I just wish I could actually meet one face to face. It's just this human need that I have right now. [/i]

I'll stop ranting now .....

avi123 · Post by **avi123** » Sat Jan 29, 2011 5:09 pm

HoseCrusher wrote:Avi, You should feel very fortunate that your doctor explained what was going on with your sleep study. Many people are here because their doctors simply said that they had a problem and handed them a machine to fix it. When they ran into problems using the machine, they found little help from their doctors. This web site exists because some people figured out some solutions and felt free to pass their information on to those who are struggling.

In a perfect world, I think sleep doctors would give much better service to their patients if they were forced to use xPAP therapy themselves. Their excellent diagnostic ability would then be combined with an understanding of how the therapy works and what the problems are that most people run into. This combination would provide excellent service to the community.

Crusher, I don't think that I would be successful selecting doctors by asking them if they had all the diseases that I had during the years

Btw, I rather have a young Doc (age 45 to 55) who graduated from a top medical school and did NOT have any of the above!

Think about having a Doc who suffers from OSA and throughout the day is yawning from lack of sleep.

p.s. I found a cardiologist near my place who is posted in the CPAP.COM list as an accredited sleep doctor. He studied in Paraguay. Interesting!

monarch22 · Post by **monarch22** » Sat Jan 29, 2011 7:02 pm

AVI, I disagree with your statement that I need to take time and convince the doctor that I can be trusted to act as a clinician to change pressures. Yes, maybe if I was changing his pressure, but this is my health. Besides, I wasn't even asking to change my pressure. I was asking to have the machine changed to Auto CPAP so I could monitor my therapy. If I don't do this, how am I to know whether the CPAP is working as well as possible for me? In my opinion, the doctor is hired to do a service. I need to trust him to know what he is talking about and to admit it if he doesn't. He needs to trust me that I will follow his instructions. As with any relationship, once that trust is gone, so is the relationship.

I consider monitoring my sleep therapy similar to a diabetic monitoring their blood sugars. On a daily basis, I would check my blood sugars and adjust my insulin & food intake accordingly. I wouldn't assume that my blood sugar would stay the same as a fasting blood test. Same with hypertension. I have high blood pressure, so I check it at home. Why, as a patient, would I only want to rely on the result from a titration study in an unfamiliar setting? If the machine is capable of providing data, why not use it?

Hosecrusher, I agree that we are all responsible for our own health and we need to find the right doctors to advise us. I also agree that the sleep study is not representative of how you would sleep at home. I told my doctor this too. He said the environment doesn't matter when you are sleeping. Are you kidding me? Strange environment, different temperature, unfamiliar bed, lights, sounds, not to mention all the wires and the mask! That is not the norm!

robysue, I can imagine how frustrating and alone you must feel. My doctors comment about losing weight just reinforces that stereotype of having to be overweight to have osa. It's unfortunate that there aren't more support groups that meet in person.

I think this forum is wonderful for advice, support and to benefit from the experiences of others. To say that it is does more harm that good would be assuming that each of us aren't capable of making our own informed decisions on our care.

scrapper · Post by **scrapper** » Sat Jan 29, 2011 7:09 pm

monarch22: this is my health. Besides, I wasn't even asking to change my pressure. I was asking to have the machine changed to Auto CPAP so I could monitor my therapy. If I don't do this, how am I to know whether the CPAP is working as well as possible for me? In my opinion, the doctor is hired to do a service.

Why, as a patient, would I only want to rely on the result from a titration study in an unfamiliar setting? If the machine is capable of providing data, why not use it?

Are you kidding me? Strange environment, different temperature, unfamiliar bed, lights, sounds, not to mention all the wires and the mask! That is not the norm!

I think this forum is wonderful for advice, support and to benefit from the experiences of others. To say that it is does more harm that good would be assuming that each of us aren't capable of making our own informed decisions on our care.

You are one smart person! Welcome to the forum!

avi123 · Post by **avi123** » Sat Jan 29, 2011 8:58 pm

monarch22 wrote:AVI, I disagree with your statement that I need to take time and convince the doctor that I can be trusted to act as a clinician to change pressures. Yes, maybe if I was changing his pressure, but this is my health. Besides, I wasn't even asking to change my pressure. I was asking to have the machine changed to Auto CPAP so I could monitor my therapy. If I don't do this, how am I to know whether the CPAP is working as well as possible for me? In my opinion, the doctor is hired to do a service. I need to trust him to know what he is talking about and to admit it if he doesn't. He needs to trust me that I will follow his instructions. As with any relationship, once that trust is gone, so is the relationship..

Hi, what other choices do have you? Think about it that a physician has subscribed an Rx for you. The DME acts as a pharmacist per the FDA rules. Now you come and tell the Doc that you want to return the Rx and get something better because you heard about it over the media. What do you think could be done? Notice that the DME like a pharmacist has no legal say here.

In my posts you can see that I am in a similar situation as you are. Even worse. Your present CPAP can output besides compliance also AHI, Mask Leak, and more. But my S8 Escape II can output only compliance. However, you can read in my posts how I am arranging to get a more advanced machine.

BTW, I am surprised that Ostrich has not yet blamed me for hijacking your post.

aahorncole · Post by **aahorncole** » Wed Feb 02, 2011 6:53 am

I think someone should establish a Doctor's Database where people can share their impressions of the treatment they had been receiving. That sounds like a lot of work, but it cloud save a lot of frustration and cases such as the one that's described here. There's me again with my "lets change the world" slogans, sorry

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