Just diagnosed-need advice!

[fillus]

I'm a 61 yr old female and consider myself a fairly active person (although because of my asthma I've never been able to keep up doing strenuous exercise). I own two businesses and keep very busy working all day and many evenings. I've never had a problem sleeping at night ... and rarely do I feel like napping during the day. I do enjoy a cocktail (or two) when I get home. My husband says I do snore occasionally, but not very loudly.

Upon suggestion from my cardiologist (I had cardioversion for a-fib Feb. 2009 .. then again early in September that lasted less than 2 weeks) I had my first sleep study last week. The only information I received as to what might transpire that night I read from posts on line. Long story short, it was a horrible night on many levels, including not being able to sleep well because of noise in hallway and other rooms, an inattentive tech who talked about the patients as "you guys", a freezing cold room with no extra blanket, icky goo slopped all over my hair, and bathroom shared by all). I was even shown a portable cpap unit and asked to "sign on the dotted line" (I guess it was a rental agreement) .... even before the test began, because "you guys are too tired in the morning to remember the instructions." I did not have enough episodes for the tech to hook me up to their unit during the night, and I cannot begin to explain how ecstatic I was to drive away from that place in the morning.

In the report, where I was diagnosed with mild apnea, it states "lights out" began at 9:32 p.m. Interesting ... because my lights were on brightly until around 11:15 when I finished my personal paperwork and texting with friends ... and then, after trying to buzz the tech (no fewer than 4 times) to turn off my lights, I eventually worked my way out of the bed so I could get to the light switch. Would this "misinformation" make any difference in the final report? It also states I should be cautioned about CNS depressants, especially at bedtime. Since I take no type of sleeping pill would they be referring to the alcohol at dinner time? It also says I should be cautioned about driving and operating dangerous machinery until my daytime symptomatology is eliminated. What???? Where did they get the idea I had a sleep problem in the daytime????

Since I will do whatever it takes in order to eliminate the a-fib, I'll have to go again (although I do NOT want to go back to the same place) for another study soon. I'm not thrilled my husband will have to sleep with someone who looks like they're scuba diving not to mention other things that won't be spontaneous any longer...

. Would it be a good idea for me to "shop" the unit, or are they pretty much all the same as far as size, noisiness price, quality, etc. or should I just take what they give me and go from there? Any suggestions would be appreciated!

[Emilia]

Hi and welcome. I am so sorry you had such a horrible study situation. When I read accounts like yours I realize how luck I was with mine. Everything that happened to you was wrong on so many levels. However, you might have slept better if you hadn't had a drink at dinner nor stayed so occupied with electronic stimuli until lights out. My directions were to abstain from stimulants all day and take no naps so I would have no problems falling asleep at the lab. My head hit the pillow and I was out.

It seems like they almost got your data mixed up with someone else's -- geesh! I would certainly NOT go back to that lab. You might want to inquire about a home test which is becoming more popular and far less expensive. You sound, though, as if you probably do have mild SA and might benefit from alternatives to cpap. Changing your position to side sleeping, looking into a dental device, practicing breathing exercises may all help you. You certainly don't fit the stereotypical OSA patient, but that doesn't mean you don't have it. We have a number of folks on this forum who have no daytime sleepiness, are active in sports, and work long hours yet have OSA.

You definitely need to get to the bottom of this.... and taking care of your heart is paramount. I know others here will be along shortly with more information based on their similar experiences. Best of luck to you.... keep us posted on your progress!

[cwied]

Sounds like a terrible experience. I'm just getting started, so take my advice with a grain of salt, but my sleep study experience was very different. The time for "lights out" on my report was accurate, and reflected when the lights were turned off. The sleep tech was very friendly and responsive when I talked to him on the intercom. I had a private bathroom, and could hear no noise from outside the room. Even so, I didn't sleep as much as usual, but I did get about 5 1/2 hours of sleep through the night.

It sounds like you should try to find a better sleep lab. It seems to me that the one you went to just assumes that people referred there are going to have issues, and fill out the forms based on that. Have you tried to get a copy of your scored report to see what it says?

[Kevin G.]

While the cardiologist may have good reasons for recommending a sleep study the interpretation of the study results should be done by a sleep specialist if there is any doubt. You might ask your cardiologist for names of a sleep specilaist of two for you to consult twith.

Do not accept the machine that the DME wishes to give you untill your sleep study has been evaluated by a specialist and until you have read enough postings on this site to get an idea as to the differences between the different types of machines.

Talk with your cardiologist but as I understand it sleep apnea can put stress on your heart so think of this as helping to deal with your heart issues.

[cflame1]

Would it be a good idea for me to "shop" the unit, or are they pretty much all the same as far as size, noisiness price, quality, etc. or should I just take what they give me and go from there? Any suggestions would be appreciated!

Most definately... as you'll get a variety of service quality, responsiveness and quality of unit from every DME (medical equipment supplier).

There's a list around here somewhere of the "fully datacapable" machines (rested gal has it). Make sure that whomever you pick to deal with is somebody that doesn't want to pawn a lesser quality machine off on you.

[Emilia]

I forgot to address the machine issue.... and I am not even sure you need one, but do NOT take a machine from a lab or DME until you educate yourself on the makes and models that will provide you with the full data you need to monitor your therapy. If you do need to have a machine, you must insist on a fully data-capable, preferably AUTO adjusting cpap machine. The one I use is whisper quiet and is very reasonably priced. There are others that are just as quiet and have all kinds of features to make monitoring your therapy easy. Our host site has all the best machines and you can do a comparison of features using their sorting tool: https://www.cpap.com

[mayondair]

I had a similar experience with sleep lab, though yours sounds like the bottom of the barrel. Don't sign anything, they are trying to scam you. Run as fast as you can and find a new lab. You will find good advice from Emelia and others here.

[Janknitz]

I would not trust that sleep study for two reasons. Either 1) you got someone else's data, or 2) they divided the number of events into the hours you presumably slept based on the wrong number of hours and determined that your apnea is "mild". I wouldn't trust that as far as you can throw the stupid tech.

So yes, definitely get a new study, ask for a "split night" so they can determine if you really have apnea and its severity in the first half of the night, and then titrate the correct pressure for you in the second half if you do.

Don't let them rush you into a machine! Your first step should be to understand exactly what your insurance covers and how they pay for it. Call your insurer and ask:
1. Do they pay by HCPC code (billing code) or by individual machine? Most insurers pay by HCPC code. HCPC code E0601 covers all CPAP and APAP machines--dumbest brick to all the bells and whistles data capable cadillac machine. Usually the insurer will pay a percentage of ONE amount (i.e. 80% of $1200), no matter what machine you get, and you are responsible for the remaining co-pay of up to (not over) the amount the insurance company (NOT the DME) sets. Ask to be certain and make sure you understand how your insurer handles this.
2. Do you have to use a particular DME provider, or do you get a better out of pocket cost with only certain providers? HMO's almost always restrict your choice of providers (and machines), other insurers sometimes do.
3. Does the insurance company buy the machine outright, or require it to be rented for a period of time? Many insurers follow Medicare, which has a "capped rental program" where you rent the machine for 13 months, and then it's yours.
4. What are your expected co-pays and deductibles? Insurers pay brick and mortar DME's about 2-3 times as much as the machines cost online. Sometimes your co-pay and deductibles add up to more than you would pay out of pocket buying the machine yourself--without insurance payment--online. So you need to know if it's really worth it to have your insurer pay for this anyway.

Once you know all that, your next step is to decide what machine YOU want--not what the DME wants to give you. You should insist, as others have said, on a data-capable machine (efficacy data, not just compliance data) and you might prefer an APAP (automatically adjusts to your pressure needs) rather than a straight CPAP (stays at one steady pressure). APAP's can be used in CPAP mode, if that's what works best for you, but you can use the APAP feature if you are having problems or for comfort if your apnea tends to be positional.

Then, unless you are stuck with just one DME (usually not unless you have an HMO), shop around to find the most accommodating DME who will give you the machine you want, has a liberal mask return policy, and seems to know what they are doing.

[brazospearl]

Welcome to the forum, fillus! I'm so sorry to hear that your experience at the sleep center was so terrible, and I agree that at first glance the report seems to be inaccurate. These people should not get any more of your money. Get with your doctor and figure out what the next step should be; I think a split night study at a better lab would probably be the way to go, but you need to decide that with your doc. I also think you've gotten excellent advice about not accepting any equipment from these people (or any others, for that matter) until you're satisfied that the information is accurate and the therapy is indicated. Good luck, and let us know how things go.

[jbenenson]

I just had my second sleep study done: CPAP titration, where they use a CPAP machine and mask to determine what pressure is required. The first test , the diagnostic test, was okay, but not great -- nowhere near the problems that you had. The second one, the titration study, was done at a hospital lab, and I don't think that's it's possible to find a better situation. What I am trying to say is you don't have to stay with one facility. Make sure the facility that you use is accredited and remember, you are in charge of any medical situation. You don't have to consent to any medical treatment, and you don't have to sign anything that you don't want to sign. Period. (In this case you can say that you signed under duress.) I would report your situation to 1) your doctor, 2) the American Sleep Apnea Association (ASAA) and 3) the Better Business Bureau (optional). Facilities like the one that "tested" you should not be allowed to treat patients!

The ASAA should be able to give you the names of accredited doctors and facilities in your area. Take your prescription for the test and have it done again at one of those places. Remember, it's your body -- in this case your throat -- so don't be intimidated. Take charge and demand the best care!