Went to see the sleep doc and GUESS WHAT I GOT?

[Mr Capers]

What support, what forum friends! Many thanks to everyone who has replied.

Apria has just been here in the person of a Nurse, who attached valves for O2 to my humidifier. Then the delivery guy himself with oxygen generator (R2D2 size and quite noisy) plus two oxygen tanks. I got a 50 foot hose! For the guys who want to compete, I've got the longest hose

This is the most I've been up and about since my operation/amputation and I'm exhausted. I'll rest some and maybe have to come back to this tomorrow.

Every thought, and good wish, and helpful advice is honored. SWS, I always sit at your feet and am enlightened. Thanks for your ready response.

Until tomorrow - Happy Naps,
Mr Capers

[Muse-Inc]

I wish you the best in the challenges you're dealing with! Friend of mine caught the bug that caused my bronchitis a yr ago, she ended up on supplemental O2 with that 50' hose and the R2D2 concentrator...not fun but her's was temporary until her daytime O2 levels returned to normal. Bodies..first it's one thing, then another, then another, and so on and so forth...better than the alternative .

[howkim]

You're in an HMO that touts itself as really responsive to it's members' complaints. Call member services - or better yet, write a letter - detailing all of this and anything else you can recall. Copy your personal lawyer, the doc and the state medical board. Might help. Might not.

[Mr Capers]

Thank you to everyone who replied. I've read everyone's suggestions and I'm doing the following:

Looking for another sleep doctor. First look says there are just 3-4 in town. This will have to be outside the HMO, an expensive venture.

Have used oxygen for two nights. First night was pretty wretched. It doesn't look like oxygen supplementation works well with nasal pillow mask. Had headache upon waking, possibility of some aerophagia, no improvement in subjective factors. Second night, changed from Opus 360 nasal pillows to Quattro FFM. I don't get along well with that mask. Difficult to stop leaks around eyes, nose, mouth plus nose bridge pressure or gum pressure - take your choice.

Have appointment with RT today. The only one in the Dept. who thinks patients should know their own data. Maybe she will look at this:

I took my data from Encore Pro and typed it into a spreadsheet. The figures are averages for the two-week periods since I started therapy. As you can see, there is a significant change in weeks 9&10. I'm having so many hypopneas, I'm wondering if there is enough flow reduction to generate low O2 numbers in my oximetry data.

The Dr. declined to look at this or discuss why my numbers had changed so much. He used the "clinical judgement" phrase, again, and said this was a case of dwelling (obsession was his word) on the numbers without adequate clinical judgement.

It is difficult to get past my anger at his summary dismissal, but maybe I'm wrong, and the increase in hypopneas isn't meaningful.

Comments?

Many thanks,
Mr Capers

[-SWS]

If it were me I would definitely get a new doctor. You currently have a doctor who refuses a PSG for an extremely complex breathing disorder, makes critical changes to your therapy, and refuses to measure the results of those critical therapeutic changes---which can be potentially mitigating or potentially adverse. How can he possibly know without followup measurement.

I would get a new doctor ASAP. The fact that acquiring a new doctor might turn out to be an expensive out-of-pocket venture unfortunately echoes countless patient anecdotes: your health is apparently far more precious to you than it seems to be to HMO corporate executives who routinely impose less-than-satisfactory parameters of medical practice on their in-network doctors. I have to wonder if your present less-than-satisfactory health care experience is based largely in execution of patient-focused treatment objectives by your doctor---or largely in HMO corporate cost structures that unfairly curtail those practicing boundaries of "clinical judgment".

A far lesser issue I would question is how your DME rep(s) set up your supplemental O2. Hopefully they used a manometer to verify pressure at the mask. If they used a longer-than-usual CPAP hose and didn't calibrate for pressure drop, then that uncalibrated pressure drop could account for a few unaddressed obstructive events. If they used a CPAP hose that significantly exceeded the 6 foot length the BiPAP autoSV was designed to use, then dynamic pressure response and signal detection can be adversely altered as well. You can use a very lengthy hose on CPAP applications and most fixed BiLevel applications---as long as the DME rep calibrates for pressure drop. But you can't get away with an extremely long CPAP hose on an ASV machine which relies heavily on dynamic detection and response in the flow-signal and pressure-response transient domains.

Opinions from others?

[jnk]

Opinions from others?

That last post from Mr. Capers convinced me, -SWS, even without hearing the doc's side. Voting now, yep, I would have to vote for "get a new doc," myself.

jeff

[goose]

Again, I'm with SWS in getting a new doctor.
One of the big problems in our so called health care system is that there is no accountability for doctors such as yours. They continue on their arrogant path, putting themselves on their holy pedestal to the detriment of their patients - they really don't seem to care as long as the MB payment is on time this month.....Besides, you're just a patient. What can you know???

One thing that came to mind, and it may be an exercise in futility, is to document everything in fine detail. The docs attitude and statements as best you can recall (time and date); lack of attention to the data and issues that that data shows.
The good RT; what transpires in that instance because it sounds like it will be contrary to what the doc is doing/finding when he/she does bother to look at data.
New doctor - cost, tests, conclusions etc. It may be that the new doc, even though not HMO, can prescribe a PSG within the HMO system - don't know (don't deal with HMO's at this point). Test results, data, doctors impression, evaluation, interpretation of the data etc.
Document everything to the gnat's ass......

I'm not a lawyer and most HMO's require arbitration to mitigate disputes, but you may have some recourse in "willful negligence" because of the "God syndrome", and medical arrogance. But again, it may be a total exercise in futility.....
Difficult for sure, however I'd bet you'll get their attention!!!!!!

Good luck!!
take care
cheers
goose

[rested gal]

Opinions from others?

That last post from Mr. Capers convinced me, -SWS, even without hearing the doc's side. Voting now, yep, I would have to vote for "get a new doc," myself.

jeff

Likewise.

I don't care how good the doctor might be (and I really question that for the very reasons -SWS brought up) his god-like attitude would fly all over me.

[Arizona-Willie]

You might invest in a Sansa clip mp3 player!

Why?

Because they also are a very very nice voice recorder. Mine will record for an hour. It's the 8 gig model. Might have to order it direct from Sansa they can be hard to find in the store. Most carry the smaller model with less memory.

It is a very nice innocent looking device you can have in your shirt pocket and unless the person was very very much a techno geek they would never dream you were recording every word of your office visit.

Voice recording of a defective doctor could go a long way with the state medical board.

It is very small, barely larger than a matchbook, very unobtrusive and very very good.

Most excellent when dealing with car salesmen and even good doctors ( very nice to be able to play back what they said in case you forgot ).
Nice to have even if you aren't in a dispute. Often doctors rattle off info and directions and then when I get home I go " ummm what did he say? ".

[-SWS]

...a Sansa clip mp3 player!

Keith and Becky hold them in high regard:
https://www.youtube.com/watch?v=mX9J5lg ... re=related



Now if I just had the slightest clue WHO Keith and Becky are....

[Kiralynx]

But you can't get away with an extremely long CPAP hose on an ASV machine which relies heavily on dynamic detection and response in the flow-signal and pressure-response transient domains.

Opinions from others?

-SWS,

Only thing I can comment on is that I was told that my Bipap Auto SV could handle up to 10 feet of hose without an issue, but that I absolutely should not go past 12 feet. (This was by a Respironics field representative, and confirmed by the RT who recommended the machine for me.)

I use an 8 foot hose because of where my machine has to sit to be safe and to give me a comfortable reach.

[goose]

A digital voice recorder is a really good idea....
Mine is an Olympus vn-6200PC. It will record about 77 hours of pretty good quality audio. less hours for higher quality, but I've had no problems with it even in my pants pocket. It was about $70 or so at Amazon.....

cheers
goose

[-SWS]

Thanks for that, Kira!

My hunch was around 8 or 10 feet as an upper limit. So that 12 foot limitation is more lenient than I would have guessed.

[kteague]

Your posts made me go look for your location - sounds like a sleep doctor I once had. Except I knew you weren't around here cause we are pretty well saturated with sleep docs. A few years ago, when my insurance situation was in limbo, I went to a local clinic. The GP there treated me inhumanely and I left there absolutely undone. My head was spinning, because I couldn't believe what had just happened to me. I wrote a letter to the medical director over all the clinics in the city, and reported in detail my experience. He arranged a meeting with me, and I instantly felt he heard me and didn't question my credibility. He offered to be my doctor thru the clinic, as he did a rotation there. I only saw him a couple times, as my insurance changed again and I could continue with the group I'd seen for 10 years. Is your sleep doctor the top dog at that clinic? If not, maybe you could stay local and just not see him. If he is the boss, or the only doc, I feel for you.

[Mr Capers]

Hi Everyone,

To the hose-length focus group. The 50 foot hose goes between the oxygen concentrator and the oxygen valve attached to the humidifier on my BiPAP AutoSV. The hose between the machine and Mr capers is the standard 6 foot cpap hose.

The reason for such a long hose? The oxygen concentrator is LOUD. Can't have it in the bedroom - if you want to sleep, that is. Imagine a small diesel delivery truck running all night. It is the size of a wider, fatter, more angular R2D2. It heats whatever room it is in. Ours is in the bathroom and it warmed the room nicely in 40 degree weather with no other heat on. This is going to take some getting used to. Don't quite know how we will handle this on our hot nights.

Kteague, and others involved in new doctor search, I'm in N California, wine country. 40 wild turkeys in the back meadow, 5-6 deer in front, about 20 minutes from stores and stuff. The town is not large and I gather there are just three sleep doctors. Two seem to be associated with the local sleep clinic, the third was in private practice, but joined my HMO. His card shows Pulmonology and Critical Care Department. There is no sleep department in HMO telephone or online listings. I guess my referral to the local sleep lab - if it passes HMO review - will put me in touch with at least one of the other sleep doctors - and on their dime! Oops, it just occurred to me that this might be one of those things where the sleep lab diagnosis goes directly back to the HMO doctor and they are supposed to review it with me.

My other alternative is to find another sleep doctor within the HMO. I see my PCP late December and will follow on this with him. I also plan to discuss filing the complaint with him.

In another development, my Friday appointment with the sympathetic RT was cancelled because she was feeling "overwhelmed." The secretary who called said: "I see you met with Dr. Blank. You probably have all your questions answered and don't need this appointment." Me: "Not really." (I am a master of understatement as you can see.) Have I been cut off from the department for arguing with Dr. Blank and daring to question him? I couldn't make another RT appointment until January.

New question. I've tried oxygen two nights and know I can't use nasal pillows unless I have stainless steel nares. Boy, did I hurt! Tried the Quattro full-face mask and had almost 3 hours of leaks, so I got very little real therapy. Does anyone have a hint for a mask that works well with O2 added to therapy?

I'm holding off on the tape recorder but have downloaded the HMO's complaint form.

Many thanks, again, for all your suggestions.

I'll keep you posted as the next revolting development comes up,
Mr Capers