History, Frustrations, and Request for Advice (Long)

j.a.taylor · Post by **j.a.taylor** » Mon Aug 20, 2007 11:15 am

Wednesday, I'm meeting with my Primary Care Physician, to go over the results of my Sleep Study. I'm looking forward to this, because I trust him implicitly, and we have a good working relationship. He always responds immediately to my health care needs, and is ready to answer any questions that I may have.

However, I'm a little bit frustrated, because I feel like I'm shooting blindly in the dark.

When I had my sleep study done, at his recommendation, the evening RT basically hooked me up, at some point in the evening came in and put me on CPAP, and I was awakened by a morning RT who told me I would need to do CPAP therapy, then quickly disappeared, never to return, while I got ready for work. I left the building without any answers.

Two days later, I was called, and told to come in and pick up my CPAP machine in two days. Once I arrived at the DME, after waiting for almost a half-hour, I was rushed into the back, sat down in a recliner, fitted with a mask (well actually two, the first one proved to be too large), handed my machine, and told to use it regularly.

It was then that I discovered this forum, which was a great help, because I really wanted to help manage my care. Your "Collective Wisdom" taught me how to adjust my mask, care for and clean my equipment, arrange my hose, etc. for the best results.

Because of that, I've responded well to CPAP, and been in 100% compliance. Recently, I contacted my insurance company about getting an upgrade to my machine, so that I could better report information to my Doctor. They told me they'd let me know within three business days. That was two weeks ago, and I've never heard anything back.

That's frustrating to me, and seems to be quite disrespectful. I now see that the DME has already billed my insurance for the first 4 months rental of my machine, and the cost of the humidfier and mask. Fortunately, they've paid 100%, and I like my machine, I just want a little more data compatibility to help manage my care.

They've also paid the Sleep Doctor, who wrote my prescription, who I never met, and of course, I don't have a copy of the prescription.

I'd like to talk about all of this with my Doctor, and I'd like to be able to ask him some other intelligent questions, so that I can get the answers I need.

My wife is a diabetic, and she's allowed to monitor her disease, provided data capable equipment, and enabled to work with our Physician. I don't understand why both he and I shouldn't be provided the same benefit.

I feel like I'm told to just blow air through my nose, and tell my doctor if I'm feeling better, but not able to provide him with data to measure my progress or adjust my treatment plan.

Do you have any suggestions so that when I discuss these things with my Doctor, I can really let him know that I've done my research, and am very interested in working in partnership to support my treatment? Any questions I should ask? Any particular way I should approach this based on your past experience?

Jefe · Post by **Jefe** » Mon Aug 20, 2007 11:37 am

Well, I had similar problems. I first tried resolving the issue with my DME. They failed to do anything. I then called my GPs office, who referred me back to my sleep doctor. I then called my sleep doctor, and insisted on a follow up appointment.

At that appointment, I got a nurse's aide (again) instead of the doctor. I explained my issues to her, and told her that in my 4 visits, I'd seen the sleep doctor once for 5 minutes, of which he spent 4.5 on the cell phone.

I explained to her that if I didn't get to see the doctor (who the front desk told me was NOT in) that I would tell my insurance that my sleep study was not conducted properly, as I had no results.

The doctor came in with 2 minutes, and I had a new prescription for a better machine for my DME in 5 minutes.

Play hardball. It's the only thing that works.

jqp · Post by **jqp** » Mon Aug 20, 2007 1:13 pm

I see I'm not the only one who has been completely suprised by the lack of coordination. I spent 2 nights in the sleep lab and NEVER met a doctor. It took them 3 weeks to get my prescription to a DME.

My GP called me to see if I had any questions about the report that the sleep doctor hadn't answered. I had to tell him that the sleep lab had never gone of any of it with me... just booted me out the door.

My insurance company has paid these guys 5 or 6 thousand bucks for these tests... it seems like some communication would be nice.

JQP

Slinky · Post by **Slinky** » Mon Aug 20, 2007 1:20 pm

The above advice is good. Another option is to try one more phone call to your insurance, ask them what local DME suppliers they are contracted with. If you are lucky and they are contracted w/more than one you're in good shape. As long as there is the option of at least one other local DME supplier if it were me and you really feel this strongly, I'd take the S8 Compact back and tell the DME supplier either they provide you w/an S8 Elite or they can have the entire kit and kaboodle back and you will go elsewhere for your CPAP and supplies.

Assuming you are in the USA you have a legal right to copies of your medical records and the data from your sleep studies as well as the dictated results report AND the script for your CPAP equipment are part of your medical records. Ask the sleep lab for copies of all of the above. The data from your sleep studies, the scored summary report, consists of some 5-6 pages, including some graphs, the dictated results are usually 1-2 pages. If they stall or hem and haw at all, repeat your request in a letter sent Certified Mail, Return Receipt Requested and indicate in your letter you made a previous verbal request which has not received a response.

Also assuming that you received your equipment in late July or early August you are pushing the limits timewise so do something NOW - ASAP - or you will most likely be fighting a losing battle.

Assuming your family doctors hasn't had any experience writing a script for CPAP and equipment have him follow the original script from the sleep lab EXCEPT specify the brand and model of CPAP, the set pressure and the EPR setting, mask of patient's choice, heated humidifier.

Good luck and God bless.

Slinky · Post by **Slinky** » Mon Aug 20, 2007 1:30 pm

You are absolutely correct, JQP. If you had been paying this out of pocket would you accept such treatment? You've paid for that insurance, either directly or via lesser wages for the paid benefit.

Contact the sleep lab and tell them the "service" has been totally unsatisfactory, that you expect to see the sleep doctor and have him go over your results w/you and not only explain what occurred during your sleep and titration and what equipment you will need but also give you the opportunity to have some say in the equipment you will be provided that you are expected to spend the rest of your life sleeping with.

As advised above, also ask them to provide you w/the data from your sleep evaluation AND your titration study, the dictated results and the script. If necessary refer them to the HIPAA regulations and put your request in writing sent as I suggested previously.

Good luck and God bless.

LyleHaze · Post by **LyleHaze** » Mon Aug 20, 2007 1:39 pm

I was lucky enough to have read up on this site before my sleep study.
Basically, I decided on an APAP, and refused to accept anything less. One Dr. agreed with me, the other refused, and gave me a bunch of B.S. on why APAP won't work, that APAP doesn't record data, that APAP can't be used in CPAP mode etc..
When he told me APAP wasn't available, I asked for as copy of my prescription, and told him I'd be choosing my own DME.
He was a bit stunned, but I got my script, and went with an online DME instead. What they couldn't offer in "in person" fitting service, they more than made up for in integrity.
Just my own experience.

LyleHaze

jqp · Post by **jqp** » Mon Aug 20, 2007 1:40 pm

I called the sleep lab on Friday after my GP had called me. The sleep lab manager, not sure of her medical background went over things with me.

I requested that everything be faxed to me. She said she would do it today. We'll see if it's on the fax machine when I get home tonight.

She was helpful in thet she offered for me to come back in and try out several different masks and borrow one for a few nights.

I also asked about getting a data capable machine, she said they'd talk about that when I came in.

My GP knows I'm meticulous. I come to my checkups with Excel spreadsheets and graphs of weight, blood pressure, etc. I'm pretty sure he'll write me a script for a better machine if the sleep lab doc doesn't work out.

I expressed my concern to the sleep lab manager over never seeing a doctor. She told me that since the sleep lab is part of the hospital and they have 6 sleep docs or so that rotate through, that who I get to look at the report can vary depending on who's on call and who is contracted with Aetna. Once again, it all comes down to insurance.

I'm going back to the sleep lab tomorrow to try out a couple of different masks.

j.a.taylor · Post by **j.a.taylor** » Mon Aug 20, 2007 1:56 pm

Slinky wrote:Assuming you are in the USA. . .

Thanks everyone, the advice is helpful.

Slinky,

I'm not sure if Michigan is still the U.S.A.

I'll have to ask George W. Bush. He might be a little suspicious of Dearborn.

Kaythu · Post by **Kaythu** » Mon Aug 20, 2007 2:49 pm

I too was given a basic machine with no data capability beyond compliance. I am currently trying to get an upgrade and feel like I'm stuck in a washing machine on spin cycle. The secretary at the sleep doctor is very understanding and supportive, the representative at the insurance is very helpful and even has a brother in law who was recently diagnosed with OSA, but... my doctor wrote a new script stating that I 'want' a different machine. The insurance can't do anything unless the doctor says it is medically necessary to upgrade and the doctor says it's not medically necessary because the base machine works just fine. I keep asking how anyone knows it is working seeing how they have no data to back that up but I get no where. I'm still plugging away at them and hope that something positive happens soon. You would think these people worked for the government!

Slinky · Post by **Slinky** » Mon Aug 20, 2007 4:37 pm

It won't help you get an autoPAP given the stand of your DME and your sorry excuse for a sleep doctor - BUT - when it comes to bare-bones compliance only vs fully data capable straight CPAP you still have a chance.

I"m sure you've read the diabetic comparison in this forum more than once. Any sleep doctor who has no more interest in his patients than just compliance ought to find himself another profession!!

Lay it on your DME supplier that your doctor has no way to adequately monitor your response to CPAP therapy, no way to know what necessary adjustments to your CPAP pressure may need to be made, no way to know what problems w/CPAP therapy you might be having w/o a fully data capable CPAP. And you sure don't want a doctor who goes by guess and by gosh!

Lay it on your sleep doctor how can he monitor your response to CPAP therapy, how can he possibly determine what problems you may be having w/CPAP therapy, how can he possibly determine what adjustments might need to be made w/o your having a fully data capable CPAP. Try to lay a guilt trip on him. You're sure he didn't mean for you to have a bare bones compliance data only CPAP. You're sure he is interested in more than just your compliance, you're sure he's more interested in your and your therapy than that.

Enlist your family doctor's assistance w/the same questions. If you or your doctor get copies of your sleep evaluation and titration studies, the dictated results and of the order for your equipment, he can re-write the script for a specific brand and model straight CPAP w/pressure setting and EPR or C-Flex level.

And - if push comes to shove REFUSE TO ACCEPT anything less than a fully data capable CPAP. Which means a Resmed S8 Elite, a RemStar Pro II w/C-Flex or a Respironics M Series Pro w/C-Flex at the least.

Call your insurance company and ask what local DME suppliers they are contracted with. Hopefully you will have the option of more than just one. If you have a choice RETURN your bare bones machine and go to another local DME supplier contracted w/your insurance company.

Good luck and God bless.

Slinky · Post by **Slinky** » Mon Aug 20, 2007 4:41 pm

j.a.taylor wrote: ... I'm not sure if Michigan is still the U.S.A.

I'll have to ask George W. Bush. He might be a little suspicious of Dearborn.

You really think Bush Baby knows his geography?? I get the impression he thinks that Iraq is the Alamo!

j.a.taylor · Post by **j.a.taylor** » Mon Aug 20, 2007 7:21 pm

Slinky wrote:
j.a.taylor wrote: ... I'm not sure if Michigan is still the U.S.A.

I'll have to ask George W. Bush. He might be a little suspicious of Dearborn.
You really think Bush Baby knows his geography?? I get the impression he thinks that Iraq is the Alamo!

He's probably sitting in the Oval Office right now shouting, "Remember the Alamo!"

Guest · Post by **Guest** » Mon Aug 20, 2007 8:45 pm

Lots to think consider...
I think hc providers are often taken back when consumers begin to know/guide their own health care options. I commend you for your take charge approach.
Unfortunately provider practice does not always keep pace with technological advances. Your hc providers must have manf specific software and compatible hardware to extract your information. I speculate that some may be resistent to this because it could change how they operationalize their pt appointments. Downloading, printing, and interpreting does take time vs. "how you doing?"
Most primary care physicians don't have the back ground in managing a sleep patient even subjectively- and therefore would really struggle with how to monitor objectively (via the download data). Trust me- they don't know what they are looking at or what to suggest once they see it...
My short term recommendations- if you just got set up in July, chances are you are still renting your sleep equipment. I would contact your insurance and ask what other DME's they contract with. Then contact these companies and find out their standards for equipment (what options do you have). Contact your current DME and suggest that you will return the equipment if they can not duplicate what you can get elsewhere. But remember, your DME and/or provider must be able to download the equipment in order for it to serve its purpose - if not this is a no-win situation(why fight for something that you can't use) Chances are, if your DME is reputable and if they are truly interested in partnering with you for best outcomes, they will try and meet your needs-

Best of luck

Slinky · Post by **Slinky** » Mon Aug 20, 2007 9:32 pm

Guest gave some good advice. I can't imagine a DME supplier worth their salt who doesn't have the software for either the Resmed or the Respironics machines!! Maybe not both, but certainly one or the other. They are the two leading manufacturers of quality CPAP machines and equipment. The three CPAPs I mentioned are three excellent quality, fully data capable straight CPAPs and the local DME suppliers should all have one brand or the other available. I'm not sure I'd want to do business w/a DME supplier who didn't carry one or the other brand!!!