Need advice for Drs appt - Updated

[40 Winks]

To sum up where I'm at: Been on CPAP 3.5 years, last 12 to 18 months haven't been doing well in the day - sleepiness has returned and went to a new doc.

He wanted a new CPAP-titration test done and mentioned there's a good chance of getting new equipment if I had the PSG also, but he left it up to me. I decided to have both tests done, then sent a fax suggesting a "auto-adjusting machine" may be appropriate for me and I outlined weight changes, sleep position changes, excess gas (aerophagia), and occasional alcohol consumption as possible reasons. I also expressed my need for a heated humidifier due to continued and constant sinus issues, but his staff mentioned the humidifier was standard Rx anyway.

I got a call from his office today stating the Dr. got my letter and wanted to talk to me "face to face". I really don't know if this will be discovery, cooperative or adversarial - I just don't know him yet. The appt is March 4th.

Now, in addition to the above reasons, I want the auto to self evaluate at home so I can get the best therapy I can.

What should I be prepared with for this appointment? Reasons? Should I tell him I'm planning on using the software to monitor my sleep? Should I bring any scientific studies available to support APAP? Should I tell him I plan on being very involved and proactive in my treatment from now on? It seems logical to me that it would be easier for us to get me new equipment from the insurance company if we can justify an APAP, wouldn't it?

BTW - I felt really great after the CPAP-titration study, no yawning throughout the day, no struggling to doze off in the afternoon. I'm really anxious to get on track with this stuff.

4TW

[TSSleepy]

I pitched a fit with my primary care physician yesterday about the "months" that it has been taking for me to get officailly diagnosed and treated through the sleep clinic, and he was able to secure me a direct appointment with a sleep doctor (bypassing the understaffed sleep clinic).

So I'm also really interested to hear ideas on this subject!

I only slept about 2 hours during my sleep study with no REM sleep, and that was with two Ambien. I guess I have some insomnia or anxiety issues too, because I simply can't imagine sleeping through a study/titration in a sleep lab.

Do you think they'd notice if I showed up drunk?

Anyway, I need to show the doc my oxygen saturation results from my own oximeter and hope to talk her into a prescription. Or at least ask her to get me a home study ASAP, if she can't go by my data. Should be an interesting discussion!

[DreamStalker]

To sum up where I'm at: Been on CPAP 3.5 years, last 12 to 18 months haven't been doing well in the day - sleepiness has returned and went to a new doc.

He wanted a new CPAP-titration test done and mentioned there's a good chance of getting new equipment if I had the PSG also, but he left it up to me. I decided to have both tests done, then sent a fax suggesting a "auto-adjusting machine" may be appropriate for me and I outlined weight changes, sleep position changes, excess gas (aerophagia), and occasional alcohol consumption as possible reasons. I also expressed my need for a heated humidifier due to continued and constant sinus issues, but his staff mentioned the humidifier was standard Rx anyway.

I got a call from his office today stating the Dr. got my letter and wanted to talk to me "face to face". I really don't know if this will be discovery, cooperative or adversarial - I just don't know him yet. The appt is March 4th.

Now, in addition to the above reasons, I want the auto to self evaluate at home so I can get the best therapy I can.

What should I be prepared with for this appointment? Reasons? Should I tell him I'm planning on using the software to monitor my sleep? Should I bring any scientific studies available to support APAP? Should I tell him I plan on being very involved and proactive in my treatment from now on? It seems logical to me that it would be easier for us to get me new equipment from the insurance company if we can justify an APAP, wouldn't it?

BTW - I felt really great after the CPAP-titration study, no yawning throughout the day, no struggling to doze off in the afternoon. I'm really anxious to get on track with this stuff.

4TW

Yes to all questions ... however, it is your condition and it is your treatment and it is your money.

Unless you have something other than plain old OSA, you really don't need another PSG or titration. How much out-of-pocket will you be with those lab fees? You may be better off financially just buying your APAP out-of-pocket from CPAP.com ... all they need is your Rx for either CPAP or APAP. In other words you only need a CPAP Rx to get either one. If you get an Rx for APAP then you must get and APAP ... which is more better anyhow.

If the doc doesn't want to play take you money home with you and just get your primary care physician to write you an Rx for CPAP and order from CPAP.com

[lynx]

Don't be jerked around by your health professional. Yes, they have studied long and hard to know what they are about, but it is YOUR health and only you know how you feel. You don't need a single reason to change equipment and get restudied if your current treatment is failing to work anymore.

I went to sleep specialist who has his own sleep study rooms in his office. I would suggest that if you are having problems with communication between a sleep center and a sleep specialist, but it sounds like you had a recent study done so just let him know the difference you felt after your study compared to normally. If he balks, make him. If he still won't do it, find a new specialist that will use your current study.

I really doubt he wants to fight about it, however, most specialists know their stuff and don't think of people that need care as hypochondriacs, it's generally doctors at hospitals and a few general practitioners that fall into that camp.

Also, if he'll write the script, a couple hundred bucks for the some parts or a core machine change is small change for the future health problems you'll be averting, so pay for the machine if your coverage won't.

[jnk]

. . . Should I bring any scientific studies available to support APAP? . . .

I don't know. But if you do, Songbird's well-worded research in the following thread may help:

viewtopic/t39173/viewtopic.php?f=1&t=36 ... 55#p318600

[elader]

my sleep study and two visits with the doc were $4000. The Autopap is $1000 - maybe $200 more than the pro. The only reason to do the study is to get $4000 more out of you... a lot more money.

[jda1000]

Well, your might be discovery, cooperative, or adversarial, as you say - but given he works for you, the last option would seem a tad unprofessional...I'd take careful notes on your sleep habits, patterns, and results until March 4th, if you aren't already, and yes, definitely tell him you plan to be very involved in your treatment - and if necessary, tell him you expect to discover a cooperative relationship with your entire care team....

Good luck...

[ozij]

To sum up where I'm at: Been on CPAP 3.5 years, last 12 to 18 months haven't been doing well in the day - sleepiness has returned and went to a new doc.

He wanted a new CPAP-titration test done and mentioned there's a good chance of getting new equipment if I had the PSG also, but he left it up to me. I decided to have both tests done, then sent a fax suggesting a "auto-adjusting machine" may be appropriate for me and I outlined weight changes, sleep position changes, excess gas (aerophagia), and occasional alcohol consumption as possible reasons.

I got a call from his office today stating the Dr. got my letter and wanted to talk to me "face to face". I really don't know if this will be discovery, cooperative or adversarial - I just don't know him yet. The appt is March 4th.

It's a new sleep doc, he seems to want to function as a doctor, and not a "writer of scripts" - he seems to want to discuss the study results with you - all of which sound fine to me. And maybe he thinks you need a bi-level?

I also expressed my need for a heated humidifier due to continued and constant sinus issues, but his staff mentioned the humidifier was standard Rx anyway.

Right.

Should I tell him I'm planning on using the software to monitor my sleep?

Yes. Just remember there are fixed pressure machines that let you track your data too.

Should I bring any scientific studies available to support APAP?

No, because he may respond by telling you that research about that point is varied. APAP does not help some people.
I would tell him you know APAP helps some people, and since there's not telling which group you you belong to you would like to have a machine you can check in both modes. An APAP can be run as a CPAP it that's what treats you better, but a CPAP can not be run as an APAP, which is why you want a machine with both options.

Should I tell him I plan on being very involved and proactive in my treatment from now on?

Of course. The two of you should be allies in the attempt to treat you OSA. Don't confuse the insurance/money issues with the medical issues. Give the doctor a chance to be your doctor. If you can't make him an ally, who supports your data monitoring, you probably need another doctor. Being honest with your doctor is crucial to getting good therapy from him/her.

It seems logical to me that it would be easier for us to get me new equipment from the insurance company if we can justify an APAP, wouldn't it?

I would try to emphasis the importance of data monitoring (especially in light of the last 18 months of sub-optimal treatment). If your doctor turns out to be a keeper, medically and interpersonally, you can get an APAP online with a CPAP prescription - and it may even turn out cheaper for your insurance company too. Insurance pays the same for APAP and CPAP. If you don't need a bi-level (bipap)' its the monitoring that should justify new equipment.

BTW - I felt really great after the CPAP-titration study, no yawning throughout the day, no struggling to doze off in the afternoon. I'm really anxious to get on track with this stuff.

That's very good - share that info with the doc.

Good luck - I hope it's a good doctor. Keep us posted.
O.

[40 Winks]

Walked out of my docs office yesterday with a script for an auto. He was a bit hesitant at first - not sure why - it was like he was looking for excuses not to write me one.

Doc - "these machines are expensive - they cost about $5000 and I don't want you to have a large bill for the amount the insurance doesn't cover"

Me - "hmmm, I've looked at several on-line providers and the average cost is about $900 to $1100. I do realize the local DME's will have higher prices due to the support and training, but . . ."

Doc - "I used to write autos all the time last year but Medicare changed their rules for 09 and won't pay for autos anymore, all of the insurance companies use Medicare as the benchmark and follow suit"

Me - "In addition to the reasons outlined in my letter, I have concerns about future insurance coverage. Right now I have good insurance, but in the future I may be in a position where the tests are not covered, or extremely high deductibles. I understand that adequate home titration studies can be performed with the autos."

Doc - "OK, it looks like you may have a problem here with the therapy, I'll document on your prescription that your intolerant to conventional CPAP"

Me - "Thank you"

[40 Winks]

AND . . . I practically had to grab my prescription out of the office staff's hands and run out. She kept trying to tell me they needed it to send to the DME. I held firm and said - "Let me rephrase - I INSIST that you give me my prescription, if the DME needs to look at the original I will provide it to them." Geesh.

You guys are turning me into a headache for these people.

Oh! I forgot to request copies of my study. I'll have to send over my request today.

Now to prepare for the next battle - the dreaded DME. If I knew for sure I would get reimbursed for a purchase from CPAP.com I would just pay for it myself and submit a reimbursement claim form. But since, they bought my original 3.5 years ago, I think I need the local DME to help justify the new stuff. Every time I call BCBS I get a different answer with regard to purchasing DME. I bought a new mask and some supplies from CPAP.com and have a reimbursement request pending - we'll see what happens.

[brucelegs]

oh Lord, I was feeling good about my appointment next week with the doc to finally get my prescription (he's a neurologist) but now I'm getting agita (my mother uses that fancy work all the time) about it. I've done my homework with BCBS and the DME I have chosen -- the doc is the unknown now. I need to get copies of my titration study in advance so I can see what he will be talking to me about with my own eyes - gonna make that call today. At the titration she said someing about a pressure of 15 which makes me borderline for bi-pap I guess.

I want to thank everyone for sharing their experiences

Mary-Ellen

[40 Winks]

Well, I received my M Series Auto w/ A-Flex on March 29th, a full month after my Doc wrote the Rx. I could write a book about circus life for all I went thru, wait somebody has done that already. This is a very long post, but its been quite awhile since I've been online. I've posted it because its good experience for those willing to fight with DME's, Insurance companies, and Doctors.

The highlights:

DME #1 - Immediately after my last Doctor visit I immediately went upstairs to the DME and dropped off a copy of my Rx, gave them "required" equipment list, and mentioned it is a replacement CPAP and my insurance informed me if it was medically necessary they would cover the new one. A week goes by and no word yet, figure there fighting with insurance company, so I call and am told the file is missing and "my associate" must be working on it and she'll call back in 30 minutes. Four hours go by so I call again, this time talk to the "associate" - "yes, I just happen to have the file in front of me, let me look it over and I'll call you back". This time she does call back and sets up an appointment two days later. I show up for the appointment and the clinician asks me what mask I used during my study. I say Opus 360 but I just got a new mask last month and I don't believe the insurance will cover a new one so soon. "YOU ALREADY HAVE A CPAP MACHINE?" Yes ma'am, I made that very clear last week. After several phone calls to other "associates" I'm told that my insurance won't cover it. I again explain my insurance will cover it if medically necessary. "Try your original DME, but in the meantime I'll contact your insurance and try to figure something out. Another week goes by and she hasn't done a thing - tells me I would be responsible for the first and second months rental by the time we found out my insurance won't cover - first month = $450, 2nd thru 13th month $154. Yep, $2300 total cost. I told them I would only get the equipment from them if they got pre approval for insurance coverage - was told it couldn't be done. I said, well . . . I won't repeat what I said.

DME #2 - After the first wasted appointment with the first DME, and at their recommendation, I contacted Apria (my first CPAP provider that I have expressed my displeasure with many times), and at their request faxed over to Apria all of the required documents and specifically stated on the cover sheet it was a replacement machine with the "required" equipment list. The same week goes by so I call Apria after my call to the first DME didn't go so well (LOL). I could tell the rep had not even looked at my account yet. Was told he had some investigating to do and would call me back. He did, and he tells me they don't provide autos except on a short term basis for home studies, and he would be willing to do that. After calmly explaining to him that between my Doctor and I, after reviewing the sleep studies, and receiving input from me about my recurrent problems at home, he has determined that an auto titrating machine is required for proper therapy. After calls between him, me and the doctors office he tells me he doesn't feel we have enough to justify a new auto to the insurance company. He calls back the next day and informs me the insurance company told him its not his responsibility to justify - that if the doctor wrote a new prescription for a different machine with required features that I did not currently have, that was good enough for them. Great, good news and we set up an appointment for Weds of the following week. Show up at the appointment (keep in mind the rep I talked to was in revenue assurance and not the RT to demo the CPAP) and the RT pulls out the machine and starts the demo. Whoa, whoa, whoa I say. This is not the machine I asked for, I asked for a M Series Auto w/ A-Flex, this is an M Series Auto with C-Flex. "Well, it is an auto and it meets the requirements of your Rx." And I say, "and so does a couple of Resmed machines, and Covidian machines and half a dozen others." I pull out my copy of the original fax and show her the "required equipment list". She says let me make a phone call. She comes back, apologizes for having the wrong equipment, will order the correct equipment immediately and have it shipped to my house the following Weds and their will be no changes to your deductible. She also adds, "your the one who told your Doctor what equipment he should get you?" Yep, that's me. The machine came the following Tues. - a day ahead of schedule. I must add that the "revenue assurance" fellow did work hard for me once he started, and we had a couple of good conversations on what avenue to take. For as much as I've talked bad about Apria, except for the week delay to get them started and the wrong machine at the appointment, I would give them two thumbs up this time around. Oh, and Apria is charging the insurance company $1400, and I get a free mask.

The Doctors office - Me - "Hey, I just got off the phone with the DME you wanted me to use and they want me to sign up for a $2300 CPAP and be responsible for it if the insurance company won't pay. AND, they told me they could not get a pre-approval. I called my insurance company, explained the situation and they said the doctors office could receive the pre approval for the CPAP, but the DME could not get it directly. Can you get a pre approval for me?" The Doctors admin: "I've been doing this for twenty years and we've never had to get a pre-approval, that's the DME's job. Let me call up there and get back to you." Ring, ring . . . "how many people do you have working on this. While I'm talking to the DME my associate is faxing info to Apria for you, there is only two of us in the office." Me - "look, your DME told me to go back to Apria, but insisted that they continue to try to help me, it wasn't my idea" Dr. Admin - "let me find out who to get the pre-approval from and I'll get back to you." Ring, ring . . . "I'm looking through your file and I don't see any justification for an auto, in fact in your letter to the doctor your stated in your last paragraph that you felt really good after using the non-auto C-Flex" ME - "did you read the paragraph where I detailed the issues I was having? This auto machine is less than $200 more than the lowest cost full data machine that you would normally get for your patients and the doctor didn't have a problem having me go though a $2500 PSG with the intention of getting me new equipment - I really don't see what the problem is." The docs office - "well the doctor is going to have to deal with this, he's leaving on vacation next Weds and his schedule is full Monday and Tuesday, but I will squeeze you in. AND BRING IN YOUR CURRENT MACHINE SO WE CAN SEE HOW YOUR DOING AT THE NEW PRESSURE." Me - "My current machine does not have any data available - it's an old Remstar Plus with only compliance data." The docs office: "Thats what I'm talking about, it will show us how your doing" Me - thinking to myself that this bimbo just told me she's been an admin in sleep therapy for twenty years and doesn't know the difference between compliance data and diagnostic data. "compliance data only show blower hours, hours under therapy, and days used over 4 hours, but I'll bring it in anyway" A half hour later Apria called and said they had it all worked out with my insurance company - I cancelled the Doctors appointment.

It's a long post, I know, but I had a lot to catch up on. My mother was in the hospital, then out for less than 48 hours and back in, I got the call at 1am and sent to the wrong hospital, I finally got to her at 3:30am and the hospital put on a respirator before we could tell them no CART, no resuscitation. Two weeks ago my sisters and I were there when they removed the respirator, expecting her to pass. Two weeks later she did - last nite. I'll be back next week.

[Slinky]

My condolences to you and your family on your mother's passing.

Congratulations on your success in getting your APAP. We shouldn't have to jump thru all these hoops to get decent and appropriate equipment. Interesting, Medicare will no longer pay for an APAP (2009)? Has anyone seen a change in the HCPCS code for APAPs yet?

[birdshell]

Thank you for your story, 40Winks. I read every word. You could teach a class in how to handle the system...and maybe you just did so!

I am sorry about your mother. That really is another situation requiring fortitude and knowledge, as well as cooperative medical personnel.

We had a similar experience in our family, where the DNR on record was ignored (legally, in PA, this can happen) by the ER doctor. I can only imagine what you have gone through with the loss of your mother. Best wishes to you and your family.

Karen,
Who loves that you had 2 DME's working for you with the doc's office