The second slept study (titration)

[ATexan]

I go in tonight for my second sleep study-- my first study was an at-home study that found that I had moderate sleep apnea (I'm on the lower end of moderate). The doctor overseeing all this is my ENT, and I have a massive set of tonsils (they cover more than half my throat on a good day) which may be the culprit, but I don't want to have them taken out because everyone in my family has sleep apnea and they don't even have tonsils (so I could go through a risky surgery and still have apnea), plus I'm pushing 40 and its a hard surgery once you aren't a kid. My ENT agreed with my point and is sending me for the second study.
Now, I know this study is for the titration and to choose a mask. The sleep center said the ENT chooses my machine and makes the order. I imagine it will take weeks, or even months because the sleep center is soo slow (my previous study was in November-- I'm now just getting my second study and its March). I have a few questions, and no one has been real clear to me about this whole thing and I want to figure out how to best advocate for myself, so I'd appreciate some help in advocating for myself, especially by people who have done it before:

1. My first concern is the weight and portability of the machine. I know that all Cpaps, are in theory, portable, but I also know some are rather big (my mom's for example- it is large, black and slightly smaller than a shoebox) and heavier than others. I travel lot-- I'm on a plane at least once a month, and this year I will basically be on the go because I have a sabbatical and am doing research for a new book, so I'll be going from Texas to Oklahoma, New Mexico and California for six months. So lots of heavy travel. I indicated it to the sleep study people and they said my doc picks the machine, and when I called my doc's office the receptionist was so unhelpful. How do I get them to at least acknowledge my needs and wants? Trust me I'm an assertive person, but I also know with doctor's offices its all "code" you have to say the right words in order to trigger the response you want-- so what is the best way to make it clear I need a machine on the lighter, smaller side that will be easier for travel?

2. This may be random, but how do people's pets react to the CPAP? I live alone and sleep with my dog and cat. The dog is ancient, and unlikely to be bothered (I think her hearing is going) but I could see my cat stealth attacking the thing-- I can shut him out of the room but homeboy can open doors when he wants to, so at some point I'll have to deal with him. How did people get their pets used to the things?

3. Also, how do restless sleepers adjust? I'm a toss and turn kind of sleeper and I'm really worried about being constricted by all the equipment.

4. Finally, how long (approximately) did it take for people to get their machines? I'm just wondering how much longer this whole process will drag out. Its been months already, and I'd like to just be done with it.

Thanks

[chunkyfrog]

Size should not be your first consideration.
Most newer cpaps are small, but the smallest "travel" machines sacrifice too much for not that much size difference.

[ATexan]

Okay, then what should be my consideration?

I know no details of my first study. The doc only told me that I fell in the low-moderate range-- meaning I was super borderline as to wether I needed a cpap or not. I'm not overweight, so losing weight wasn't an option and we can't do a dental device because I have TMJ, had a major surgery to correct that some years ago and my dentist won't allow anyone to mess with my jaw (his short and forthright comment to the ENT, "no dental devices for that one! It could misalign all the work we've done!") plus I have pretty bad symptoms- I'm always falling sleep at my desk grading or reading. It's awkward when a student swings open your door and is like "professor?" and you are crashed out, face down on your copy of Emerson. So the decision in the end was to treat it. I mean what does one look for in a cpap?

All I know is a friend recommended the nasal pillow because I'm a side sleeper, and I like to read in bed (and I wear glasses.) He, like me was a "borderline" person but the cpap improved his life tremendously, so he encouraged me to try it out.

[richart]

I know no details of my first study.

You should ask the doctor's office to provide you a copy of the sleep study. If you are in the U.S., HIPPA gives you, with few exceptions, the right to inspect, review, and receive a copy of your medical records and billing records that are held by health plans and health care providers covered by the Privacy Rule.

[Mudrock63]

Okay, then what should be my consideration?

I know no details of my first study. The doc only told me that I fell in the low-moderate range-- meaning I was super borderline as to wether I needed a cpap or not. I'm not overweight, so losing weight wasn't an option and we can't do a dental device because I have TMJ, had a major surgery to correct that some years ago and my dentist won't allow anyone to mess with my jaw (his short and forthright comment to the ENT, "no dental devices for that one! It could misalign all the work we've done!") plus I have pretty bad symptoms- I'm always falling sleep at my desk grading or reading. It's awkward when a student swings open your door and is like "professor?" and you are crashed out, face down on your copy of Emerson. So the decision in the end was to treat it. I mean what does one look for in a cpap?

All I know is a friend recommended the nasal pillow because I'm a side sleeper, and I like to read in bed (and I wear glasses.) He, like me was a "borderline" person but the cpap improved his life tremendously, so he encouraged me to try it out.

There are a few things to consider, if you have a choice or any input on your machine. I think most here would guide you towards an APAP, which is like a CPAP but gives you the feature of varying your pressure range, versus only having the option of one fixed pressure setting. You would also prefer one that is FULLY data capable, and you want that written on your prescription if you can get it. Most machines are data capable, which means your insurance company can monitor your use and make sure you are complying with your treatment. FULLY data capable means you can access the full range of data the machine records and monitor your own treatment at home. There are discussion threads all over this board on what machine to get depending on what you are prescribed. Which is going to depend on your doctor's interpretation of your sleep study.

I had two decent in-lab sleep studies. By decent, I mean I slept at least several hours during each. My AHI was 37, which categorizes as severe, and my oxygen levels dropped into the 60 range, which is not good. The sleep doctor, whom I never saw face to face, prescribed me a fixed pressure setting at 6.0cm. Fortunately I was provided with an APAP that was fully data capable. You see, the prescribed setting only lowered my AHI to the mid-20's, which means I was having my sleep disturbed by respiratory events 25 times per hour all night. Also fortunately, I ran across this board and an experienced lady walked me through several pressure setting changes which eventually got my AHI below 2.0. So this board is a God-send, if you can tolerate some of the BS that always occurs on public web boards. There are some very knowledgeable contributors here that can help you. And, of course, some trolls.

The mask choice is up to what works for the individual. I had pillows at first and they didn't work for me, but many folks are very happy with them. Then I tried a full-face mask. Once I got used to it, I was fine. Then it was time for insurance to buy me another, so I went with the nasal mask. That is what I am using at present and doing very well with. I have hung onto my full-face mask in case I get a cold or other respiratory condition. The full-face masks help maintain your treatment if you are mouth-breathing for any reason.

I believe it was 2-3 weeks between my titration study and getting the machine. Seemed like longer, but I was anxious to get started because I was tired of feeling like exhausted crap all the time.

There is tons of great information on here. Study up and take control of your treatment. You MAY get lucky and be prescribed the exact right setting(s) for you. Many of us are NOT that lucky. You may also luck out an get a very knowledgeable doctor to walk you through. Again, sadly, many of us weren't lucky there either.

Finally, there are also many threads on here about CPAP and travel. I think you want a good machine to have at home, and a backup to travel with. Also, so far no issues with my dogs attacking my machine or chewing anything up. Thank God! This stuff ain't cheap.

[robysue]

Now, I know this study is for the titration and to choose a mask. The sleep center said the ENT chooses my machine and makes the order.

The script is usually for the type of machine and the settings for the machine. In other words, the ENT usually will write a script that says something like CPAP @10cm or APAP @8-12cm. Most people with OSA are initially prescribed a CPAP or an APAP. Technically a script for a CPAP allows you to purchase an APAP, if you can find a DME that will sell you one and still honor your insurance.
Other types of PAP machines are bilevel, bilevel with timed mode, and ASV machines. Each of these types is more expensive and they are designed to treat people with more complex sleep disordered breathing problems and/or to treat people with OSA who have trouble adjusting to CPAP/APAP.

It's the DME (with or without consulting you) actually picks the make and model of the machine under most circumstances. In other words, they get the script saying CPAP @10cm, and they choose the machine. Some DMEs only carry one brand: They set everybody up with F&P Icons or they set everybody up with PR DreamStations or they set everybody up with Resmed AirCurves. And in this case, they often set everybody up with the cheapest model in the line they sell, and that model most likely will record little or no data beyond usage data. The DME may or may not be willing to let you pick an APAP or a CPAP that records efficacy data.
Other DMEs do carry multiple brands of machines and they may let you test more than one brand of machine at the office. Some DMEs now routinely set patients up with APAPs (mine does), but it can be hard to find such a DME.

It's important to note that a doc can choose to prescribe the exact make and model of the machine by writing a script that says something like: Resmed AirSense 10 AutoSet set in CPAP mode at 10cm, and in theory the DME then should provide that exact make and model of the machine. But unless the doc has checked the box on the script that says "Dispense as written", the DME can substitute an equivalent machine (such as a PR DreamStation Auto). The DME may even try to substitute a machine that can be set to the prescribed settings (such as a Resmed AirCurve 10 CPAP or a Resmed AirCurve 10 Elite.)

So it's worth talking to your ENT and asking him if he cares which brand of CPAP you use and whether he's willing to write a script for an APAP instead of a CPAP.

It's also worth calling your insurance company to find out exactly how they pay for durable medical equipment. I was shocked that my insurance (which is usually very good) has a 50% copay on durable medical equipment and hence I had to pay 50% for my machine and I continue to pay 50% for all of my CPAP supplies.

And when you are talking to your insurance company, ask about getting a list of "in network" durable medical equipment providers (aka DMEs). And start making phone calls and asking what kind of equipment they use when they set their new customers/patients up at the beginning of therapy. It's far better to identify a DME that you want to use beforehand than to get stuck with a crappy DME after the fact.

1. My first concern is the weight and portability of the machine. I know that all Cpaps, are in theory, portable, but I also know some are rather big (my mom's for example- it is large, black and slightly smaller than a shoebox) and heavier than others. I travel lot-- I'm on a plane at least once a month, and this year I will basically be on the go because I have a sabbatical and am doing research for a new book, so I'll be going from Texas to Oklahoma, New Mexico and California for six months. So lots of heavy travel.

Sounds like your Mom's machine is at least 8-10 years old, if not older.

Most modern day PAPs are relatively small, but they are not tiny. You can compare sizes and weights of the various machines at a place like Cpap.com if you want to. When you do, it's probably best to compare entire weight, which includes the humidifier, the power brick, the hose, and the carry bag instead of just machine weight which is just the weight of the blower. The most commonly prescribed machines come from one of four manufacturers: F&P, PR, Resmed, and DeVilbass. The F&P Icon is by far the heaviest and most awkwardly shaped for travel purposes. The PR DreamStation is the smallest of the current models in these 4 brands; its entire weight is listed as 4.37lbs at CPAP.com. (That's the lightest entire weight I could find at CPAP.com) If your nose can tolerate unhumidifed air, you can reduce the travel weight by about 50% by leaving the humidifer at home. (My nose can't do that.)

There are some smaller machines designed specifically for travel that are made by other companies. I believe the smallest APAP blower unit on the market right now is the Z1 Auto Travel CPAP Machine. But it has no humidifier and its entire weight is 3.75lb, which is about .6 lbs lighter than the PR DreamStation with its heated humidifer. If you can handle unhumidified air and the need to minimize weight is critical, the Z1 may be worth investigating.

Most people have found that traveling with the slightly older Remed S9 and PR System One machines was not particularly difficult. The PR DreamStations are lighter and smaller than the older PR System One, and so it should be even easier to travel with. The new Resmed AirSense 10 machines have integrated humidifier, so the blower unit is more than just the blower of the S9, but the entire weight for the AirSense is actually quite a bit less than the entire weight for the S9.

I indicated it to the sleep study people and they said my doc picks the machine, and when I called my doc's office the receptionist was so unhelpful. How do I get them to at least acknowledge my needs and wants?

Tell the receptionist that you need to speak directly to the doc about your medical condition and request a call back from the doc himself. It's frustrating to play phone tag, but sometimes that's the best you can do. At a minimum tell the receptionist that you need to know what DME they typically send the scripts to because you need to double check with your insurance company about your coverage. Then call the DME itself and start asking questions.

Trust me I'm an assertive person, but I also know with doctor's offices its all "code" you have to say the right words in order to trigger the response you want-- so what is the best way to make it clear I need a machine on the lighter, smaller side that will be easier for travel?

Again, call your insurance company as well as the doc's office and find out from the insurance company whether you have a choice of DMEs.

2. This may be random, but how do people's pets react to the CPAP? I live alone and sleep with my dog and cat. The dog is ancient, and unlikely to be bothered (I think her hearing is going) but I could see my cat stealth attacking the thing-- I can shut him out of the room but homeboy can open doors when he wants to, so at some point I'll have to deal with him. How did people get their pets used to the things?

There isn't a typical reaction.

Some pets ignore them. Some think it's a great toy to play with. Some dogs will regard a hose left lying on the bed as a great new chew toy. Some cats will poke holes in a hose with their claws if the hose is left in an accessible place, others won't.

In my case, the cat learned he could step on the ON/OFF switch and wake me and my husband up with much screaming on my part. The cat thought this was great fun. I didn't. He did this one time too many in my first two months of PAPing and at that point I woke up, tore the mask off my nose and screamed at my husband "Get the cat out NOW." The cat has been banned from sleeping in the bedroom ever sense. Or I should say, mostly banned. As the cat has gotten older and I have gotten more used the machine, there have been times when I have not made sure the cat is out of the bedroom with the door shut before going to bed. But he's not stepped on my On/Off button on those rare occasions when he's in the room with us.

3. Also, how do restless sleepers adjust? I'm a toss and turn kind of sleeper and I'm really worried about being constricted by all the equipment.

It depends. For some people, the restlessness is actually a symptom of the OSA and they find it goes away after they start CPAP. For other people the restlessness is independent of OSA and they have to learn how to turn over with the hose and mask. Some people find hanging the hose helps keep it out of the way of turning over. I just seem to hold the hose all night and control where it's moving without thinking about it very much any more. But I will be honest, it took me a long time to get comfortable sleeping with a PAP machine and at a certain point it seemed like the PAP machine was causing much more restlessness than it was fixing.

4. Finally, how long (approximately) did it take for people to get their machines? I'm just wondering how much longer this whole process will drag out. Its been months already, and I'd like to just be done with it.

I'm actually very surprised at how long it's taken you just to get to the titration study.

In my case the time line looked like this:

• Mid July: I see my PCP and ask for a sleep test because my hubby insisted
• August 1: The diagnostic sleep test
• By August 10 or so: Phone call from both the sleep doc's office and the PCP with results
• Mid August: Appointment with sleep doc to discuss results and to set up the titration test.
• August 31: Titration test. It would have happened earlier, but hubby and I were traveling earlier.
• Sept 5: Nagging phone calls from the sleep doc's office start saying: Let us call in the script to XXX.
• Sept. 22: I locate a DME that is in-network that will give me an S9 Autoset.
• Sept. 23: I call the sleep doc's office and tell them where to send the script.
• Sept. 24: I pick the equipment up and start PAPing.

Start to finish: a bit more than 2 months from the PCP visit to starting to PAP. It would have been shorter if hubby and I had not had to travel out of state for 10 days OR if I'd found a DME that was willing to sell me the S9 AutoSet sooner than I did.

[palerider]

1. My first concern is the weight and portability of the machine. I know that all Cpaps, are in theory, portable, but I also know some are rather big (my mom's for example- it is large, black and slightly smaller than a shoebox) and heavier than others.

perhaps you should peruse this: https://sleep.tnet.com/equipment/cpapmachines

buy two, one for home, one for your 'go' bag.

[ThePrincess&ThePea]

I'm very new to CPAP, but it took 6 weeks from the day of my at-home sleep study to the day I picked up my machine and mask. My insurance is through United Healthcare and they don't like to pay for the full-blown sleep studies because they're so expensive. They prefer to pay a little more for an auto machine than to pay for a titration sleep study + subsequent sleep studies. From what I understand, if you get a CPAP that needs titration you'll periodically have to have sleep studies to make sure the pressure you need hasn't changed.

As far as travel goes, my auto machine is the small shoebox size and it came with a really nice travel case that looks like a small briefcase (small handle on one end and an adjustable shoulder strap). I think it would make an easy carry-on and the case doesn't have any neon flashing signs that scream, "Old lady CPAP comin' through!!"

I sleep with a chihuahua and the first night I wore the mask she barked at me, but after that it was like no big deal. I was surprised she didn't freak out more because normally she goes nuts if my husband puts on even a totally non-threatening bike helmet. My mom said that I should get her a tiny doggie CPAP. lol

[Mudrock63]

4. Finally, how long (approximately) did it take for people to get their machines? I'm just wondering how much longer this whole process will drag out. Its been months already, and I'd like to just be done with it.

I'm actually very surprised at how long it's taken you just to get to the titration study.

The day I had my first ENT appt., they called me back with the first sleep study THAT night. Then the titration about a week later. My PCP was shocked that I got in quickly, as the clinic he was sending folks to had a five-month waiting list. So I enlightened him about the clinic I used. I don't know if they are tied into networks, have their favorites, get kickbacks, are unaware of alternatives in their area, or what. I was just delighted to get my machine relatively quickly. About four weeks total from initial appt with PCP. Of course then it took three months, with the help of the awesome folks here, to tweak my settings to get optimized treatment.

[Sheriff Buford]

As far as your animals... you can get a cpap cabinet off amazon. It's an end table and all the equipment is inside the cabinet, and during the day, when not in use, the doors are closed and outta' reach from the critters. When in use, you open the cabinet doors, slide the machine out. In the morning, slide the machine in, put your mask on the extra shelf, and close the doors... outta' sight, outta' mind!

Sheriff

[Sheriff Buford]

3. Also, how do restless sleepers adjust? I'm a toss and turn kind of sleeper and I'm really worried about being constricted by all the equipment.

I move around a lot at night. I got a Hose Buddy (hanger system). It moves with me as I toss and turn, but takes the pressure off the machine. It also eliminates the hose from being draped over you and getting tangled up. The Hose Buddy was the best cpap investment I've made. Plus, the cpap cabinet I previously mentioned will eliminate you pulling the machine off the table at night.

Hope this helps, Sheriff

[ATexan]

Thank you all for the tips, really-- all this is so new for me.

The study was a nightmare. I'm a person who moves a lot in their sleep and the mask was loose, I think the nasal pillow was too big (the guy running the study said they only had one size and that the DME would fit me more snugly.) and all the wires made me feel claustrophobic.i slept maybe 2 hours. They just barely got enough information. And the cpap they used at the sleep clinic didn't have a humidifier so I felt like I had a scorched nose by the end of the night.

The sleep study guy did tell me that he would send the information to my ENT who would place the order with a DME and the DME should contact me within 7 days. The cost of the study went to my deductible, which is now met, so my insurance should cover 80% of the cost of the cpap. So I am waiting now on the DME, I did tell the ENT I wanted in a machine thanks to yalls advice, and he was receptive. So now I wait.

[robysue]

The sleep study guy did tell me that he would send the information to my ENT who would place the order with a DME and the DME should contact me within 7 days.

I'd strongly suggest that you call your insurance and get a list of DMEs that are in-network. And I'd also suggest calling the ENT and finding out which DME s/he intends on sending the script to.

You (not the doc) are going to be a customer of this DME for the next 5 years (or more), and you need to be sure that you are comfortable with the DME that supplies your equipment. If your insurance company has more than one in-network CPAP supplier, it can pay to shop around and tell the doctor which DME you want to use rather than allowing the doctor to choose the DME.

It's also important to screen the DME before they call saying, "We've got your equipment ready. When can we deliver it? Or when can you pick it up?" Many DMEs will automatically supply their new customers with a CPAP that records little or no efficacy data (i.e. a "brick"). And you don't want that. Many DMEs have ridiculously limited choices in masks. You don't want that either. Some DMEs have some pretty ridiculous mask return policies. You don't want that either. And finally, some DMEs have ridiculously stupid and insensitive customer service. And you really don't want that.

The only way you can prevent getting stuck with a really bad DME is to be proactive and make the DME earn your business by being able to tell them that if they don't get you the equipment you want, you'll just go over to Better DME across town and get your equipment a Better DME.