Hueffenhardt Introduction (New User)

[Hueffenhardt]

Hi, all,

I am a 35-year-old male in Kansas, and I recently had My first office visit with a sleep doctor and split sleep study. I was a self-referral. I started snoring when I was about 23 or 24. But, I started having apneas about a year and a half ago as witnessed by my wife. I didn't let that concern me too much at first. I knew my snoring got worse whenever my nose was stuffed up and I had to breathe through my mouth. I have seasonally allergies to ragweed pollen (late summer / early fall). Recently, my sleep has gotten much worse, waking up several times a night because I couldn't breathe and my nose, mouth and throat were dry and inflamed further constricting my airway. I usually breathe solely through my nose when I sleep, except when I can't because it is congested or inflammed. I was very tired in the morning on a couple days, and one day I woke up with a headache. I decided that it was time to get treatment.

Since I was pretty sure that I had obstructive sleep apnea, and I knew the treatment was xPAP, I wanted to skip the whole doctor visit and sleep study, etc and just buy an APAP machine online and start sleeping better. But, upon doing research I found that one has to have a prescription to buy a new one. Schade! So, I looked for sleep centers in my area and found one. I called and set up an appointment and was seen last Monday morning.

I have no other health problems and take no prescription meds. I weigh 201 lbs and am 5'9", which technically means I am obese. I have a 16.5" neck. My blood pressure is typically slightly elevated, but never high enough to concern any of my doctors. I don't smoke and I only drink occasionally (1-2 mixed drinks once every 3 weeks if that). My lymph nodes on either side of my neck, under my jaw, have always been a little larger than typical.

I liked my sleep doctor; he is the medical director of the clinic and has been chairman of an ethics board in the past, and he is into research. He asked my to say "Ahhh" while he looked in my mouth. He said that with most cooperative adults (kids are different), when they are asked to say "ahhh", one can see all the way to the back of their throat. But, I was born a little different, as my tongue doesn't get out of the way without a tongue depressor, which means my apneas are likely due, at least in part, to the anatomy of my mouth/throat. I told him that although I am relatively young, I came in because I want to get started early with treatment as I don't want to put more wear and tear on my heart, as both my parents died young of heart disease and/or heart attacks. He said that was good because the damage is additive - the longer one waits to get treatment, the more damage is done.

When he learned that I am a statistician, he got excited and drew some quick graphs on the examination table paper explaining relationships between poor quality sleep and health problems and a bell curve showing the distribution of sleep times. When we left the office so that he could deliver the order for the sleep study to the receptionist, he proudly proclaimed that we had a statistician here and that I actually understood the graphs he likes to draw, etc. The order for the split study said that if my respiratory disturbance index (RDI) was above 20, then they should do the titration study.

For those who might not know: Whereas the AHI is equal to the average number of episodes of apnea and hypopnea per hour, the RDI is equal to the average number of respiratory disturbances per hour. One study has demonstrated that use of the AHI alone leads to the underdiagnosis of obstructive sleep apnea in 30% as compared to the use of the RDI (Goetting, C , Downey III R. Sick, symptomatic and undiagnosed. Paper to be presented at the Annual Meeting of the Association of Professional Sleep Society, San Antonio, TX. 2010.).

Anyway, they had an opening to get me into a sleep study that night. So, I followed instructions and did not consume any caffiene (even chocolate) after noon, and showed up at the sleep center around 8 PM. I change into my night clothes (a t-shirt and shorts). One of the staff brought me 4 breathing apparatuses to try on to see which I liked best in case they needed to do the titration study. They brought me two nasal pillows (one was a Swift - the staff person said he uses that one at home) and two nasal masks. One of the nasal masks was a F&P Zest, and I don't know what the other was except that it had a gel insert. I did not like the one with the gel insert as it pulled my upper lip up and pressure on my upper gums under my nose (even when adjusted properly). I liked the Zest alot! The soft foam and silicon skirt conformed to my face nicely and the mask felt very light. The headgear was comfortable in its give or stretchiness. I liked how securely it held the mask even when I laid the side of my face on my pillow as I usually sleep at night. Every mask I tried on, I made sure to lay down on the pillow with, as every mask fits differently between sitting up and laying down. I tried both nasal pillows, but I did not like them as I had a difficult time getting air through them. The CPAP machine was on and hooked up to each of the masks when I tried them on. I suggest to all newbies that when they try on masks be sure to try them while connected to a CPAP machine and lean your head on a counter or table if a pillow is not around.

Concerning my face: I have a wide face, but my nose is narrow. The bridge is not too high or too low. The tip of my nose is not rounded, but comes to a soft point. My nostrils are narrow. Just inside my nose, my septum leans to one side (the result of a teenage headbutt to the nose during a soccer game). I have a pronounced overbite and my two front teeth partially obscure the two teeth directly beside them. I have a small mouth. I say all this because I know the fit of a mask is very peculiar to the individual. Perhaps those who have characteristics in common with my face might like the same masks I do or might be able to suggest others I have not tried before.

After I picked the Zest mask, they put in on the night stand next to the xPAP machine (I think it was made by Respironics) on the night stand and asked me to sit in a chair so that they could put all the leads on me, etc. As I sat in the chair, one worker asked me to flex my foot up and down so that he could find the edge of my calf muscle, and he attached a lead to both legs there. Another technician measured my head with a tape measurer and used some abrasive cleaner to put marks on my scalp where she would later attach leads with some paste. It hurt when she was rubbing marks on my head. The other tech put two lead on either side of my chest and then put two stretching belts around my torso (one around my chest and one around my abdomen) to measure breathing from the outside. They asked me if I had ever broken a finger, presumably so that they would not use that one, then put a pulse reader/oximeter thimble on my right ring finger. They then put a wire over my ears and under my nose to measure air flow out my nostils and/or mouth - it had two solid prongs, one went into each nostril (just a little bit), and one small loop that rested on my upper lip. They then ran a clear tube, like the ones people who need supplemental oxygen use, over my ears and under my nose and inserted the hollow prongs into my nostrils, though no oxygen was ever pumped through the tube. Anyway with two prongs in each of my narrow nostrils, it was crowded to say the least, but as my nose was not congested at the time, I could still breathe through my nose relatively easily. But, of all the wires and tape and paste all over me, the stuff they had in my nose was the most uncomfortable, especially when my face was in the pillow, and I thanked the technician heartily when he told me I was done with them so that they could start the CPAP titration with the nasal mask, but I got ahead of myself.

So, after I was all wired up, the tech asked if I needed to use the bathroom before I got in bed, so I did. When I came back she asked if I wanted to watch tv or just go to bed. Although it was only 9 PM, and I usually don't go to bed until 10:30 PM, I decided I was tired enough to sleep, so I laid down. I was going to lay down in my normal sleeping position which is mostly on my stomach with one knee and elbow bent to that I am somewhat on my side, but the tech instructed me to lay on my back as there were some tests she wanted to run first. So, I did and she turned off the lights and left the room then spoke to me through an intercom. She directed me to look straight ahead, then back and forth to the left and right simulating REM. She had me blink 5 times, hold my breath as long as a could, then flex my calf muscles. Once she was done, she told me that I could lay in any position I wanted and go to sleep. I rolled over onto my stomach with all of my wires in tow. Normally it takes me about a minute to fall asleep, but due to the fact I was going to bed early and in a strange situation, it took me between 15-20 minutes to fall asleep. I woke up numerous times on my own and it took me several minutes to fall back asleep each time. Normally, I wake up switch from leaning on one side to leaning on the other and fall quickly back asleep, but during the study I was awake longer during the times I woke up. Perhaps an hour and a half into the night, the tech told me that they needed me to lay on my back, presumably because that is when one is most likely to have apnea episodes. Well, I never sleep on my back, but I complied. Immediately, I had a hard time breathing because my nose was stopped up, so I told the tech I needed to blow my nose. She came in and helped me get my mask off and showed me where the tissues were. I then figured since I was already up, I might as well use the bathroom again. I typically get up to urinate 3 times a night, even if I go before I fall asleep. So, after unplugging me and then re-plugging me back in, I laid on my back and it seemed to take a long time for me to fall asleep, but eventually I did then woke up a few times.

Then, the tech came in and told me that it was time to put on the nasal mask. I was relieved because I could take all those prongs out of my nose. I put on the mask, started the treatment and slept some better than the first part of the night, although I still woke up a lot, once to use the restroom again. My throat, nose and eyes did get a little dry, even though my machine had a heated humidifier, but they were not as dry as they usually are on a typical night. Around 4:30 AM, they again asked me to sleep on my back and I did. They woke me up at 6 AM, took off all the sensors and equipment, and had me fill out two questionnaires asking me about my sleep and then about how the staff treated me. She said that I responded real well to the CPAP. I don't think I had any leaks from the mask, and I kept my mouth shut throughout the night. I told them that I wanted to take a shower. They said that the paste they used on me would wash away, but I needed to turn the heat up in the shower as hot as I could handle it. It washed out fine. I got dressed and went to work.

I won't get any of my results until my next doctor's visit on Jan 17th. However, I do know that I must have averaged at least 20 RDI's an hour during the first half of the study, or they never would have had me to the titration part.

I have been researching the heck out of everything having to do with OSA and treatment options and equipment and DME's and my insurance carrier's policies, etc, including reading a lot here. I think I want to stick with the F&P Zest, as it was comfortable and did not appear to me to leak (we will see when I look at the data). I have narrowed my choices of a machine down to two: The F&P ICON Auto with heated breathing tube and the ResMed S9 AutoSet with heated humidifier and heated breathing tube. I want auto's because they only give you the higher pressure when you need it. They both have great detailed efficiency data and unlike the IntelliPap (and really every other device on the market) they have heated breathing tubes. I want the heated breathing tube for effective transfer of high humidity to the mask with minimal condensation. My nose, eyes, throat, and mouth drying out and becoming inflamed shrinks my breathing pathway and raises my discomfort. Studies show that pressure can be lowered as much as 10% when humidity is well controlled. Our bedroom is on the cool side when we sleep. I know some people don't have a problem with rainout using regular tubes, but I don't want to take that chance and both of these machines can monitor temp and humidity at the mask and direct necessary adjustments. The only thing that concerns me about the S9 is oft reported tube failure.

Hopefully, my doctor can be persuaded to write a script for one of these two. I have BlueCrossBlueShield of Kansas and when I called they said with all of their durable medical equipment, they will only approve the basic device, not with all the bells and whistles or things that are solely for your comfort, etc. So, I am hoping by having the doctor write a prescription for the heated hose, they will see that I really need it and it is not just for my comfort. Anyway, with the insurance plan I have, after I and my DME have decided on a device, the DME has to submit a form to BCBS basically asking permission for me to buy it. It may take two weeks to hear back from them. Once they approve it, if I haven't yet met my $300 deductible, I have to pay that, and then 20% of the remaining cost with them paying 80%. One nice thing is that they have a lot of approved DME providers. I have read the many horror stories on this site of bad DME's, so that makes me wary. Interestingly, my sleep center is also an approved DME provider. You wouldn't know it from the facility, as there is no part of it that is set up in anyway like a store: no cash register or aisles with equipment, etc. However, now that I think about it, while I was waiting in the doctor's office lobby, I saw some interactions between patients and staff (handling/exchanging masks and machines) that would seem more like something a DME would do. Oh well, wish me luck on using my sleep center as my DME. I have a backup DME in town if this doesn't work out.

Anyway, that is where I am today. I am already grateful for the community here and the good advice that is offered. Hopefully, someone will find some use out of my story.

[rested gal]

What an excellent introductory post, Hueffenhardt. Welcome to the forum.

You've sure been doing your research. No wonder the doctor was excited about talking with you.

Some thoughts about a few things you mentioned...

I have narrowed my choices of a machine down to two: The F&P ICON Auto with heated breathing tube and the ResMed S9 AutoSet with heated humidifier and heated breathing tube.

If you decide to get the ResMed S9 Autoset, I think you'll be very happy with that particular machine, and with the amount of detailed data it can provide.

I want the heated breathing tube for effective transfer of high humidity to the mask with minimal condensation.

Very good idea -- a heated hose.

both of these machines can monitor temp and humidity at the mask and direct necessary adjustments. The only thing that concerns me about the S9 is oft reported tube failure.

You're right to be concerned about the S9 climateline hose's frequent problems. At least so it seems, as reported in many posts on this board. My guess is flimsy construction.

I'm sure you've seen these posts, so this link is for new readers:
LINKS to discussions about problems with S9 "climateline" hose
viewtopic.php?p=551739#p551739

Something to consider instead of proprietary accessories... I'd suggest getting:

A separate heated humidifier -- the Fisher & Paykel HC 150 humidifier.

A separate heated hose -- sleepzone's "heated cpap tube" (often called "Aussie heated hose") or a Repti heat cable.

Those separate items can be used with any brand, any model of machine.

With the separate items, a person is not tied down to considering only certain manufacturers' brands in order to get the extras they want or need. And if a person changes to a different brand machine in the future, or acquires a different brand for a backup machine, and still wants to have heated humidification and a heated hose, there's not the extra expense of getting yet a different proprietary integrated humidifier and/or hose.
viewtopic.php?p=546813#p546813

[quote="

both of these machines can monitor temp and humidity at the mask and direct necessary adjustments.

I'm not so sure that works as well as simply setting a separate humidifier's heat adjustment where you want it, and having a separate heated tube simply keeping the air hose warm.

I've been using an F&P HC 150 humidifier and the Aussie heated hose for about six years. Very pleased with both. Zero rainout. Worked great with the many different brands and types of machines I've used. Year round, I've not had to change the heat adjustment (set quite low) on the humidifier except for the very rare (couple of nights a year) occasions (congested-with-a-cold) when I use a full face mask. For mouth breathing with a FF mask, I turn up the heat for max humidification.

"Integrated" humidifiers look spiffy on a nightstand, matching the machine as they do. I've tried their integrated humidifiers with the many machines I've had. When it comes to performance and durability, I'd always choose the separate F&P humidifier. Even when it comes to travel considerations, separate doesn't take up much more space than integrated.

Again, you've probably seen the discussions in this link, Hueffenhardt. You really have done your homework!
So again, this is for new readers:
LINKS to discussions about the Aussie heated hose - to prevent rainout
viewtopic.php?t=5305

[Janknitz]

Welcome! You sound really well prepared.

If you haven't already come across it, please read my blog post here http://maskarrayed.wordpress.com/what-y ... me-part-i/ about insurance coverage for CPAP machines.

I have BlueCrossBlueShield of Kansas and when I called they said with all of their durable medical equipment, they will only approve the basic device, not with all the bells and whistles or things that are solely for your comfort, etc.

Sounds like you've already talked to your insurance company, but make sure you understand about HCPC's codes. In all likelihood, BCBS reimburses by HCPC's codes, and the important thing for you to understand is that the S9 auto you want is the same E0601 HCPC's code as the most "basic device" without all the bells and whistles. So you should be able to get exactly what you want, although DME's will try to convince you otherwise. Maybe t BCBS won't pay the extra cost for the heated hose, but they should reimburse the S9 auto unless it's an HMO type plan.

It is helpful to have the doctor specify exactly the machine you want in your RX and require that it be "dispensed as written", though it's not really required. With a specific RX, the DME can't refuse to provide what you want, without it they will try to tell you they can't give you this machine or your insurance won't cover it (that's why you need to know if they will before you ever talk to the DME). The mask RX, though, should say "mask of patient's choice" so you can change to whatever you need to find the right mask.

It will be interesting to see what this doctor does. He sounds like a great, collaborative doctor who likes to have intelligent patients like you involved in your treatment on the one hand. On the other hand, you say he has an ownership interest in the sleep clinic which is also a DME--and the profit margin on the S9 auto is the lowest, so giving you that script specifically for the S9 Auto may cut into his profit.

[Hueffenhardt]

Thank you, rested gal and jan! You both brought up good points to remember and consider. Also thanks for reading my long, first post.

[robysue]

Welcome to the forum from a fellow math geek.

If you can go with the S9 AutoSet, I think you'll like it's on-board data a lot better than the on-board data than the PR System One Auto's on-board data.

The differences between the data available in ResMed's ResScan software and PR's Encore Viewer software are not as easy to pick a clear, slam dunk winner. It really is more like comparing apples to oranges. ResScan presents flow data, flow limitation data, and snore data as continuous functions of time and easily allows zooming in as close as you like, as well as allows you to look at thinks like tidal volume and a few other things. Encore Viewer has no wave form flow data (althouh Encore Pro, which is harder to find and harder to install, does) and presents the flow limitation data and the snore data as tick marks only. But Encore Viewer does have RERA data based on a propriatary PR algorithm for analyzing breath sequences that have a high probability of being scored as a RERA on a full PSG, provided, of course, that the breath sequence in question started in an epoch scored as "sleep", which no CPAP can properly determine. Still, it's a start on giving the patient some data on how many potential RERA's might be occuring even in the presence of CPAP treatment.

Have fun looking at your own data once you start getting in every morning.

[jbn3boys]

I have narrowed my choices of a machine down to two: The F&P ICON Auto with heated breathing tube and the ResMed S9 AutoSet with heated humidifier and heated breathing tube. I want auto's because they only give you the higher pressure when you need it. They both have great detailed efficiency data and unlike the IntelliPap (and really every other device on the market) they have heated breathing tubes. I want the heated breathing tube for effective transfer of high humidity to the mask with minimal condensation. My nose, eyes, throat, and mouth drying out and becoming inflamed shrinks my breathing pathway and raises my discomfort. Studies show that pressure can be lowered as much as 10% when humidity is well controlled. Our bedroom is on the cool side when we sleep. I know some people don't have a problem with rainout using regular tubes, but I don't want to take that chance and both of these machines can monitor temp and humidity at the mask and direct necessary adjustments. The only thing that concerns me about the S9 is oft reported tube failure.

Welcome to the forums, Hueffenhardt. You have done your research! You are a well-informed patient, and will make a great addition to the forums!

With regards to your machine choice, you may want to also consider the Respironics System One Auto with AFlex. While it doesn't have a heated hose, it does have what they call "Humidity Control". I have been VERY happy with this system. I have the humidity where I need/want it at the mask, and I have never had any problem with rain-out. Here is what Respironics has to say about their Humidity Control:

System One Humidity Control has been designed to establish optimum patient comfort and device performance. Patients select one of five dial settings to receive a consistent delivery of relative humidity at the mask to meet their personal needs. For additional comfort, System One now has improved absolute humidity and target relative humidity levels across all humidifier dial settings. In addition, a new “classic” mode provides the ability to shut off humidity control, if desired.

Even in changing environmental conditions, consistent humidification levels are preserved throughout each night. System One closely monitors room temperature, room humidity, and flow to determine what is required to maintain the patient-selected humidity level. By controlling relative humidity output at the mask, rainout can be prevented, under most circumstances. With such intelligent control, our other comfort technologies, such as Flex, perform at their peak, providing maximum comfort and encouraging long-term compliance.

[msradar65]

Hi Welcome to the group. I am new to CPAP as well its been two months. I would go with the S9 autoset if you can. I use that machine and I have been very pleased. I can monitor my own data with software. I have never had problems with rainout. I use the climateline hose. Thus far I have not had any issues with my climateline hose either.

You will get some excellent advice from the long time members of this group.

[Hueffenhardt]

Robysue,

Nice to meet a fellow math geek.

jbn,

Thanks for the suggestion and info.

msradar,

Thanks for the welcome and info about your experience with the climateline hose.

[Hueffenhardt]

Well, tomorrow morning is the day I find out what my sleep study numbers are and start the process of getting my cpap equipment. I hope that I don't have any problems with the doctor, the DME, or the insurance company. Wish me luck!

[scrapper]

I hope that I don't have any problems with the doctor, the DME, or the insurance company.

And if you don't have problems with at least one of those three.......you'll be the unusual one! Make sure you report back.

You're obviously a newbie with such a positive, optimistic attitude!

[tschultz]

There is always hope; I have a great family doctor and my DME has been great so far. The jury is still out on the sleep doctor; good initial visit after first sleep study but I've had to push very hard for everything since then.
As for insurance that is always another matter altogether .

[Cindy Lou Who]

Hueffenhardt... Welcome to the forum. I'm so glad you've done much of your "homework" in advance. And you've gotten off to a great start with your Dr. Sadly, some are not so lucky.
My experience with Iowa DME's have been lukewarm. Ask your DME if they have a contract with various xPAP manufacturers. Only one carries the ResMed machines, all the others within 100 miles of my location have a contract ONLY with Respironics. Another DME carries ResMed masks but not the filters or machines. I had to go "out of network" to get the machine I wanted. You sound like you are definitely up to the challenge and won't let a DME sell you something you don't want. The S9 Autoset is a real good choice. I have the climateline hose and have no trouble with "rainout". My hubby gets "rainout" and he has an unheated hose with an insulating cover around it. Use care when disconnecting the headgear from the hose and only pull on the solid gray end of the hose....not the clear part with the heating wire....when removed the headgear from it. Position your machine so the hose coming off it lays in a straight line, and doesn't hang off the machine.
Be sure to get software ASAP so you can read your data and begin to understand it. that will help you on solving any leak issues, or anything else you encounter.
Good luck tomorrow getting your Data-capable machine.
cindy

[elena88]

welcome!
great post...
although I am not a geek, I have been known to drool over their posts!

ditto on the s9 autoset, its a sweet one!

and to scamper further down the geek path get an oximeter and you can graph yourself into a stupor!

I love my oximeter!

[rested gal]

Well, tomorrow morning is the day I find out what my sleep study numbers are and start the process of getting my cpap equipment. I hope that I don't have any problems with the doctor, the DME, or the insurance company. Wish me luck!

Good luck! We'll be very interested to hear how it all goes. Smoothly and successfully, I hope!

[jbn3boys]

I'm one of the almost lucky ones. My doc (pcp) has been a little difficult with this issue, but the sleep doc seems good, and the DME and insurance have actually been wonderful to work with...even exchanging a purchased machine back to a rental when I found out (after the first of the year) that I needed a different machine.

I did not get an S9 like I thought I wanted, since my DME only carries Respironics machines. But you know what, I LOVE my machine(s)! I am supper pleased with the machine, hose (NO rainout, ever), the software, everything. So, if you "can't" get the S9, it might just be a good thing!

Good luck with the appt today, and with beginning your journey! You are in good company here at the cpaptalk.com!