Advice needed on first cpap

It has literally taken months to get a prescription from the extreme incompetence of the sleep clinic of the famous national medical center where I am being treated for heart failure.

The prescription puzzles me. It says:
DME/Supplies Prescribed: AutoPAP at 4-12 cm H2O and warm air humidifier. Please, provide Respirionics DreamStation Pro with heated tubing. PLEASE, USE ENCORE ANYWHERE MODEM with full compliance report, including apnea index and leaks.
CPAP Mask: Medium P-10 nasal pillows
Chins strap: Provide if needed, later
COMPLIANCE REPORT CARD. Request compliance reports: 1,3,6,12 months.

This puzzles me because I indicated to the sleep clinic I will buy my cpap online, and not from a DME.
Also, I said I preferred the Resmed Autosense 10, which is quieter and generally considered slightly better than the Respironics.
Moreover, how would I use a modem when I have no phone jack? And I don't have a windows computer. And, as far as I know, I'm not using a DME anyway.
Also confusing is that it looks to me like the DreamStation Pro is not autosense, but that's probably beside the point.

So, I'm thinking tomorrow I will buy the Resmed from cpap.com. I will also download Sleepyhead. But I don't want to totally blow off the well known doctor at the sleep clinic.

What makes sense for me to do?

Who knew there would be so many nightmares on the way to getting a better night's sleep?

Downtwoner wrote:Also confusing is that it looks to me like the DreamStation Pro is not autosense, but that's probably beside the point.

you're right, it's not. point is, the person writing the rx didn't care about what you wanted.

If you purchase the equipment out of pocket, there is no need for compliance information. If you want to keep your doctor informed of your therapy, you can download Sleepyhead reports to give to him. The DME is out of the picture.

What makes sense to me is for you to check with your insurance to see if you can purchase online and then make a claim. Even if you have met your delectable your part of the deal can vary. If things look right then do it, you don't need those compliance demands. cpap.com has been my online choice for years.

So, I think what I am hearing is that I can use my prescription to buy whatever I want. The prescribing doctor just ignored my instructions, but I can use it as I wish anyway. Is that right?

And if my doctor wants reports, then I can provide them to him myself, it seems. This whole system of recording information about us for doctors, who then probably only get summary reports after a time delay, with no information about us provided to us, is nuts.

As far as insurance, I'd be happy to be reimbursed, but right now my priority is advancing my recovery from a life threatening illness. There are all kinds of studies now showing how cpap is connected to heart failure, some done by my very own hospital. One researcher said there needs to be a way to diagnose apnea at home, the way that blood pressure and glucose can be measured. I think I'm learning that there actually are machines that can do it, or do a lot of it. But you need a prescription to buy them. That's a little weird. The need to get a prescription has delayed my getting a machine for several months. I'm very frustrated by this.

Yes if you have your Rx on paper then you are in control, its your therapy and you can benefit as you wish. You can fax, scan or mail your Rx to any brick and mortar DME or on line vendor you wish. Your main goal is to get a data compatible machine regarding a purchase. Your question for the doctor should be what does your heart condition have to do with any concern with your sleep apnea? He may have a legitimate cause for wanting to monitor your sleep. There are no doctors here.

Thanks for the advice. It's very helpful.

As far as doctors go, once I get established with the cpap, I will email my in hospital cardiologist, my outpatient cardiologist, my dentist, my family doctor, all of whom are affiliated with the same teaching hospital, and tell them what I have learned from my experience. As far as I know, only the sleep specialist is interested in the data from the machine, but I may as well make it available to all of them, I guess. The sleep specialist said a cpap can add 5 or 6 points to the heart's ejection fraction, and that is what the cardiologist would be interested in, I guess. That's a big difference.

I'm going to tell the cardiologists that they should give all heart failure patients the survey sleep doctors use and should consider getting a nurse practitioner to administer the in home sleep study. They need to get a faster way to sort people out and get them on the cpap if it is needed. The dentist, who teaches at a great dental school, was wrong to give me a dental device that could not cure my degree of apnea. He should be giving his patients a questionnaire and a sleep study, and referring patients whose apnea is to severe for him to treat. These are all top rate doctors, but they need to get more up to speed. They all have a lot to learn.

Downtwoner wrote:These are all top rate doctors, but they need to get more up to speed. They all have a lot to learn.

As cold as it may sound, Soon you may understand these top rate doctors are all making decisions that will maximize their profits. You may even find they don't care about you or what you want.

Downtwoner wrote:I'm going to tell the cardiologists that they should give all heart failure patients the survey sleep doctors use and should consider getting a nurse practitioner to administer the in home sleep study.

When possible that should happen long before heart failure. But most cardiologists are not in sleep medicine but do profit from heart failure.

Downtwoner wrote:So, I think what I am hearing is that I can use my prescription to buy whatever I want. The prescribing doctor just ignored my instructions, but I can use it as I wish anyway. Is that right?

Yes, but much can depend how the order is written. Yours may not give you much leaway.

Downtwoner wrote:The prescription puzzles me. It says:
DME/Supplies Prescribed: AutoPAP at 4-12 cm H2O and warm air humidifier. Please, provide Respirionics DreamStation Pro with heated tubing. PLEASE, USE ENCORE ANYWHERE MODEM with full compliance report, including apnea index and leaks.
CPAP Mask: Medium P-10 nasal pillows
Chins strap: Provide if needed, later
COMPLIANCE REPORT CARD. Request compliance reports: 1,3,6,12 months.

This puzzles me because I indicated to the sleep clinic I will buy my cpap online, and not from a DME.
Also, I said I preferred the Resmed Autosense 10, which is quieter and generally considered slightly better than the Respironics.

Both are good cpaps but Respironics is much better to run on 12V battery when camping or the power goes out.

My guess is that your top rated doc uses a kind of rubber stamp for his equipment orders so he doesn't have to think about individual needs when ordering equipment. Which is why he ordered things you don't need or want like the modem and the downloads; ALL which are billable items to the insurance btw. And ordered your pressure to be wide open at 4-20 cm. Get a copy of your sleep study report so you know what pressure suppressed the most events for you. This will save you much time and frustration.

Downtwoner wrote:As far as insurance, I'd be happy to be reimbursed, but right now my priority is advancing my recovery from a life threatening illness.

If you know what cpap AND mask you want you might consider buying from craigslist or someone on this forum at least until the other stuff gets straightened out. Most of us do have a backup and/or travel machine also.

Downtwoner wrote:The need to get a prescription has delayed my getting a machine for several months. I'm very frustrated by this.

Finally, get copies of all your records, doctor notes, doctors orders, sleep study report, etc. So you can order your equipment online or anywhere you choose.

At some point you may also want to find yourself another top rated doctor. I find word of mouth the best way to vet out doctors and DMEs.

My cardiologist is not listed as a top rated doctor. However, on all the patient rating sites, she gets a near perfect rating with a much larger than usual number of reviews.

Anyway, she automatically screens for sleep issues and will refer patients for a sleep study if necessary.

Sorry for this OT response but I did want to give an example of a doctors who puts patient needs above profit.

49er

My doc loaned me an Auto PAP with the defaults of 4-20cm. When I went to him to follow-up, he checked the report and asked me to continue using the Auto PAP.

I had since went ahead and bought a Dreamstation Auto. When I went to him for follow up again, his technicians had some problems downloading the data (their version of Encore is too old i think). I doc said he is fine for me to generate my own report and bring it to him for the next appointment.

Probably u just need to suggest what works out for u.

Thanks so much for everyone's help.

I got my equipment today, and I have a question. I have a ResMed AirSense 10 Autoset and a Swift FX mask. When I try it out, air is escaping from the holes in front of the mask when I am inhaling. Cpap.com said it should not work that way. When I set the exhale adjustment to 2 that did not change the issue.

I've ordered a P-10 that will be here tomorrow.

I don't see what could possibly be malfunctioning on the mask. Am I misunderstanding something, or setting something wrong, or is this a known issue.

Any advice would be appreciated.

Downtwoner wrote: When I try it out, air is escaping from the holes in front of the mask when I am inhaling. Cpap.com said it should not work that way. When I set the exhale adjustment to 2 that did not change the issue.

you misunderstood what you were told. air always blows out from the vent holes when the machine is on and the mask is in place.

And that 'air' is actually CO2, so don't ever block the vent with bedding (rebreathing CO2 is not fun).

Downtwoner wrote:Thanks so much for everyone's help.

I got my equipment today, and I have a question. I have a ResMed AirSense 10 Autoset and a Swift FX mask. When I try it out, air is escaping from the holes in front of the mask when I am inhaling. Cpap.com said it should not work that way. When I set the exhale adjustment to 2 that did not change the issue.

I've ordered a P-10 that will be here tomorrow.

I don't see what could possibly be malfunctioning on the mask. Am I misunderstanding something, or setting something wrong, or is this a known issue.

Any advice would be appreciated.

Air will always come out from the vents as long as it's attached to the cpap and turned on.

The holes are meant to let the CO2 escape when u breathe out. However, the design inadvertently allows air from the cpap machine to escape through the holes. However, the cpap machine is able to keep the required pressure even with the air escaping from the vents.

I tested it by attaching my nuance pro and use my fingers to cover the and made sure there is a good seal. Air still escapes. The same also happens on a my full face mask.

I do agree that the vents can be quite irritating. I usually sleep with my hands on my pillow. The escaping air will constantly blow on my hands through the night.

Thanks everyone. I've used the machine for 2 nights, and it seems to be working. I even dreamed last night, so I must have had some REM sleep.