Abt to embark on treatment; 1st appt. w/ Dr. tmrw. Advice?

[kcarter]

Thanks to all who contribute here. You've already made a difference for me and I haven't even started my treatment.

A month or so ago, my cardiologist suggested I do an overnight pulse oximetry which in turn indicated a night at the sleep lab would be a very good idea.

I slept for slightly under 6 hrs and had slightly over 300 events. After reading the results, the sleep doc's office called to move up my post-test appointment by two weeks in order to "get me started on treatment asap..."

That was a few days ago and my appointment to discuss treatment options with the doc is tomorrow. This will be the first time I've even met the Doctor.

During these past few days I have read (and learned!) a lot on this site. The level of detail, the potential pitfals, adjustments, setbacks, possibilities... all a bit overwhelming at this point. But I am determined to make a success of this, find a way to stop feeling like @#&! and get my life back.

So my questions:
What is the most important thing for me to accomplish tomorrow when I meet this doctor? What are the most important things for me to ask? How can I better my odds of a successful intro to treatment?

I already feel like the time I've spent browsing the posts have been a big help but any further advice will be really welcome.... I'm just a bit anxious...in case you couldn't tell.

Thanks

[rested gal]

Hi kcarter,

Glad you've found your way to a sleep study and to this message board before receiving equipment.

If you've not already dug into this blog, I'd do that:

http://www.smart-sleep-apnea.blogspot.com
Mile High Sleeper's great information resource for cpap users.

That would be a lot of info to try to read and digest before tomorrow's appointment though!

So, here's what I'd go in asking the doctor for...

A prescription specifically ordering this machine, at these settings:

Respironics BiPAP Auto with Bi-Flex and heated humidification
Pressure: EPAP 6 IPAP 18
PS: 8
Bi-Flex: 3
Ramp: off

That sounds pretty bossy, telling the doctor what machine and what pressure range you want, but....that's what I'd ask for.

And here's why I'd ask for that:

I'd want to give myself as much chance as possiblefor COMFORTABLE, effective treatment right from the get-go.

I'd want a machine that will "auto-titrate" the pressure I actually needed throughout the night...using less pressure when more wasn't needed. Less pressure being of benefit as it reduces the chance of aerophagia, mask leaks, and disturbing noise from mask exhaust. When I needed more pressure (as when in REM and/or sleeping on my back) the machine would self-adjust up take care of that. When I needed less pressure (as when not in REM and/or when sleeping on my side) the machine would self-adjust down.

I'd want a machine that delivers "bi-level" therapy...a comfortably lower pressure that lasted throughout every exhalation. I've used straight cpap machines as well as autopaps, and machines with C-Flex and EPR (two different kinds of exhalation relief.) To me nothing feels as comfortable exhaling as a bipap machine does.

At this time, the Respironics BiPAP Auto with Bi-Flex is the only "regular" treatment machine that can give both those modes of treatment at the SAME time -- auto-titration (autopap to adjust the pressure as needed) and bi-level (bipap for easiest exhalation) operation.

If the doctor refuses to write a prescription for that specific machine and doesn't have a better reason than "you don't need that kind of machine" (doesn't have a medical reason contraindicating auto-titration for you) then I'd try to get him to at least write a prescription for a "bipap" machine rather than a straight cpap machine. If his reason against prescribing the BiPAP Auto is that he doesn't think "autopaps" are good treatment machines in general, then again, I'd try to get the Rx for just "bipap."

Armed with a prescription that has only the word "bipap" on it somewhere, you could buy the Bipap Auto for yourself, out of your own pocket from an online store like cpap.com

If he insists on writing a prescription just for "cpap", then you can use the Rx that says "cpap" on it to buy yourself an "autopap" online. You wouldn't be able to buy the BiPAP Auto, though. Need "bipap" on the Rx for that one. But I'd definitely at least get an autopap over a straight cpap machine...and a prescription that says "cpap" on it would let you get that from an online store.

No matter what is said about the severity of your sleep apnea, I'd not let myself be rushed into accepting whatever machine the home health care place (the DME) decides to give you. Nor would I let myself be pushed into letting the doctors office send the prescription to a DME of the doctor's own choosing, who will "set you up."

Think about it this way. Even though "they called to move up my post-test appointment by two weeks in order to 'get me started on treatment asap'..." they've already seen the severity, yet there's been no rush to actually give you a machine immediately. Which they certainly could have done. So for all the talk about getting you started on treatment "ASAP" there have been days and days of delay. Yes, you do need to get on treatment, but spending a few more days to get EXACTLY the machine you want will be worth it in the long run...imho.

Just my two cents, and I ain't no doctor.

[kcarter]

Thanks so much, rested gal.

"Comfortable, effective treatment right from the get go.." hits the nail right on the head. I do want to get started soon, but most importantly, started right.

A couple of years ago I had a different pcp who had a few standard cardio tests done, found everything normal and told me I wasn't a kid anymore and should just get used to being tired. I don't see that doc any more.

I'm very much in the mode of wanting to be in control of my treatment and you've given me a great place to start. I don't know this sleep doc, and with any luck he'll be a good partner, but either way, I feel much better prepared to enter into that dialogue than I ever could have been without this forum.

I expect I'll have more questions after tomorrow's encounter.

Thanks again, and keep up all the great work.

[jskinner]

What is the most important thing for me to accomplish tomorrow when I meet this doctor? What are the most important things for me to ask? How can I better my odds of a successful intro to treatment?

At a minimum I'd try to get a machine that will do detailed data recording (not just compliance) and one that can do auto titration.

Having the data recording is important to be able to monitor your treatment progress. An auto will adjust the pressure as needed though out the night. As rested gal suggested, get an BiBap Auto if you can...

[oldgearhead]

I didn't see any mention of a titration study at the time of your PSG.
Therefore, the ONLY machine they can start you on is an Auto Bi-Pap,
because they have no idea of your pressure requirements. (CPAPs and
APAPs only go up the 20 cm/H2O, but Bi-PAPs go to 25 cm/H2O).

Try to avoid another sleep lab visit, and get the Auto Bi-PAP.

Also - be sure and get a copy (at least the summary) of your sleep study.

[kcarter]

You're right, oldgearhead, I haven't had a titration study and I was not aware of the different pressure ranges of the dif machines... very helpful bit of info.

and also thanks, jskinner, re the detailed data recording. I've been through too many adventures with the medical industry to be willing to just follow instructions, although I'm open to a good partnership and hope I find one with my local doc and dme. Nevertheless, I want info, info, info and I am determined to be involved and informed in my treatment.

thanks both of you for your posts

[snoregirl]

[I've been through too many adventures with the medical industry to be willing to just follow instructions]

How wonderful and refreshing. You will be fine.[/quote]

[kcarter]

thanks for the encouragement, snoregirl

I've just come back from my initial appt... went pretty well. Doc has a slightly different approach than I was looking for but is very open to dialogue etc and I'm going to give him the benefit of the doubt at first. I did get a smartcard machine and will be tracking my progress along with him. I'll post some questions about his approach when time allows, but I've got to run to work.

It appears you have a swift pillow rig which is what he started me using... I'll be strapping it on for the first time tonight; any tricks I should know about?

thanks

[Linda3032]

Are you sure you have the equipment listed correctly in your profile?

Do you really have a Remstar Plus matched up with an M series humidifier?

[Wulfman]

If you have a "Plus" machine, all it will give you is hours slept......NO other data.

Your doctor works for YOU. Get a machine that will collect the REAL data.
If your doctor has a "slightly different approach", you need to give him an "attitude adjustment".

Best wishes,

Den

[DreamStalker]

Yep ... like Wulfman said ... you need REAL data. You doc's approach cannot be an informative one if he has insisted you take a machine that does not collect data other than compliance.

[kcarter]

Good catch Linda3032, it's a remstar plus m series cflex with m series heated humidifier.

Wulfman, wish I could agree that doctors worked for us, but I think that's a thing of the past; doctors work for insurance companies who write the checks and there's no question that fact plays a role in their judgements. My pcp related a scary example; I had recent bloodwork that revealed borderline-high cholesterol. She did not immediately leap for the prescription pad to order up some statins. She gave me good advice on diet, etc and thinks we'll be able to move the numbers down slowly that way HOWEVER, she said that my insurance company will have gotten the lab results before she did. And after a month or two, when someone (or a computer) catches that no statin scrip has been written for me, she'll get a letter from the insurance company questioning her decision. She will also likely get a computer generated letter from a pharm company reminding her of the various drugs I would be a candidate for. If she carries too many patients with high chol in the files and no accompanying statin prescriptions she could find herself dropped from the plan. So at very best, docs (I think even good ones with the right intention) are operating in a major conflict of interest situation.

As for my sleep doc and his approach to the machine and the start of my therapy, all I can say is my read on him is that he's likley to be someone I'll be able to work with in the long run. He has a big practice with a very high success rate (backed up by some other references aside from his own statement). He's willing to engage the conversations I initiated and spent a lot of time doing just that. My expectation is that I'll get his "compliance" in ordering up a Pro series with the kind of reporting he knows I want. That will be a win-win... but if I can't get him to do that, I'm lucky enough to be able to go straight to cpap and just pay for what I want without fighting the insurance factor.

Fact is, last night was my first night and... touch wood... it went really well. He started me on a fairly low pressure (7 ) and spent a lot of time making sure I had a mask that had a good chance of being comfortable. I know it's only one night, but I had virtually no discomfort or problems with the mask, fell asleep quickly (before the machine had ramped all the way up) and slept wihtout waking for 8.3 hours. Don't remember the last time that happened. Can't say that I felt like a spring chicken today, but my energy level and clarity of mind today had my staff asking if I was "on something". So, for now, I'll put up with the doc's mild resistance to autopap, etc. and concentrate on becoming acclimated to the new reality of my bedroom rig, try to put together a string of good nights like my first and eventually end up where I want to be with my machines and my health. I probably wouldn't feel this patient with the process if I hadn't had such a good first night but for now I'm just going to stay with the positives and work gradually on the negatives and... hopefully... keep sleeping

Thanks always for the input

[Wulfman]

kcarter,

You don't necessarily HAVE to have an "Auto" to track your therapy progress. The M Series Pro is also a data collector. It's similar (in function) to the Pro 2 that I've used for almost 2 years. They may be fixed-pressure machines, but that's not all that bad. As long as it's collects data you can use to monitor your progress.....that's what counts. (even if you have to pay for it yourself)

Glad you had a good first night. Hang in there.

Best wishes,

Den

[kcarter]

I checked out the M Series Pro and it looks like a reasonable choice that won't break the bank too badly if I have to go the self-pay route. If I can continue to feel better with a fixed pressure machine, then okay... but i do think it will ultimately be important for me to have hard data to go along with my subjective experience when trying to evaluate the therapy. That certainly seems to be the strong consenus from those of you who've been dealing with this a lot longer than I.

I appreciate the comments and encouragement, Den.

thanks

Ken

[Linda3032]

Ken, you might consider asking your doctor to switch you to the M Pro, instead of the M Plus. At least that way you and he will have some "numbers" to work with. After all, since the machine is going to be yours, why not start with one that "you" can monitor your AHI (for future use if for no other reason).

The Pro can't be that much more than the Plus.

I just looked them up on cpap.com. The difference in price for the whole package is only $100