Finally Received My First PAP Machine Today!

My Story:

I started complaining about fatigue to my doctor probably 6 or 7 years ago. I had a full physical and blood tests and he gave me a clean bill of health other than telling me I should really lose some weight. A couple years went by and I went in for another physical and complained of fatigue and headaches with the same basic results. To my doctors' credit, he mentioned the option of having a sleep study. Unfortunately, my doctor can be a little too passive and I can be a little thick skulled. I brushed it off. I went back in about a year ago and had another physical and blood work and now my cholesterol was a little high and he mentioned the option of beginning to take medicine for it. I asked him for a few months to take off some weight and eat better to see what happens and he agreed. I lost a little weight and my cholesteral moved back into the safe range. Then my older brother passed out one day due to high blood pressure, was put on meds and sent for a sleep study and was diagnosed with Severe OSA. He mentioned to me after talking with his RT that one could get a pretty good idea if they have a problem using a recording pulse oximeter if I didn't want to have a sleep study done. I found one online for a good price and tested myself, my wife, and even a friend or two and saw that my SpO2 levels were worse than everyone elses, much worse than my wifes, so I scheduled another doctors appointment to show him the results and ask for a sleep study.

I sat on that prescription for about a month, very busy at work, and subconciously in denial. My wife finally called a sleep center and made an appointment for me. In fact, I lucked out and there was a cancellation the night I came home from my business trip. My RT was very personnable and very experienced. Given the circumstances, I had an OK experience.

Choosing a DME was tough. I have to thank all the folks on this site for preparing me for this process. My sleep center definitely tried to get me to use them for a DME, but they have been completely unresponsive to me since the sleep study. I had planned to give them a shot at my business. I left them 3 or 4 phone calls since getting my sleep study and they still haven't called me back. I had a pretty good sleep study experience, under the circumstances, so I don't understand what happened with them. Maybe they are just under-staffed.

It took a lot of arm twisting to get my doctor to put a specific machine on my prescription. Then I called my insurance company, which I have pretty good coverage through, and they were actually very good to me. They even explained that I could either do a lease to own or an outright purchase. Since my deductable was already met for this year, why not purchase the machine outright? Plus this keeps me from having to be at the DMEs mercy for such a long time. I literally called about 20 companies. Finally, I got a referral from a friend so I called them. They were very responsive and promised to get the machine I asked for since it was on my prescription and my insurance covered it minus my portion. I was so paranoid that they would show up with a lesser machine, but they didn't.

My HME arrived late morning, a few minutes early for my appointment, and stayed for nearly an hour explaining the machine and adjusting my mask.

After my HME lest, I ran to the store and picked up some distilled water and couldn't wait to take my new machine for a test drive.

I don't have a card reader yet, but I do have a pulse oximeter, which I used during my nap. It took me a long time to get to sleep. Actually, I think I kept having apneas and waking back up each time I dozed off. The PulseOx showed a whole bunch of desaturation events during this time. Then when I woke up I felt terrible and had a headache. The pulseOx SpO2 average results were worse than without the CPAP machine on, but my heart rate was more stable.

My sleepcenter titrated me to 8cms H2O, which I am pretty sure is just too low. I did a split study and only slept for about 1.5 hours on the CPAP in the lab.

I'm expecting to get in trouble, but I went to Auto mode from 8cms - 12cms for tonight. I just can't tolerate worse results and feeling worse on CPAP. Again it took me a long time to fall asleep. I was in bed for 3.5 hours and woke up wide awake. My curiosity, got the best of me, so I downloaded the PulseOx results and see a big improvement. My average SpO2 went up to 95.9% and I had no desaturations below 89% and both my SpO2 and pulse were more stable. I feel better about staying on these settings now to see how things go over the first week. I should get my card reader in a few days and will be able to make some decisions on tweaking my settings after that.

Thanks to all for your help!

Sounds like you've got a good handle on things and are now well on your way to feeling better - and sleeping safer. It can take a while for our brain to stop seeing the equipment as foreign. Hope having trouble falling or staying asleep doesn't last long for you.

I, too, just got my first CPAP machine (yesterday).

My issues started about a month ago, where I woke up so fatigued that I ended up taking off almost a week of work. I felt completely disconnected from reality and just couldn't snap back. I was also very irritable, would fall asleep at my desk, having incredible migraines, and generally felt like I hadn't slept in months.

After some self diagnosis, I am convinced I have narcolepsy so I cut to the chase and go see a sleep doctor the following week. She does a quick exam, measures my face, and neck for a CPAP fitting and schedules me for a sleep study that evening. I get a phone call later in the day from the hospital's business office explaining that my insurance doesn't cover sleep studies. I am perplexed so I visit with our benefits representative the next morning. She explains that indeed it's *not* covered and goes onto explain that sleep studies are recommended for everything from drug addictions to depression so they opted to exclude them from our policy.

I kind of felt like the sleep doctor was doing a "sales job" on me anyway and there was no way that I had sleep apnea so I opted to go see my PCP instead. She did a complete physical and blood work. I mentioned the sleep study suggestion to her and she said let's see what the blood work looks like. A few days later my results came back - they are completely clean. My cholesterol and everything was excellent. She recommends that I go see a neurologist.

Almost immediately my neurologist suggests that I have sleep apnea and says that I have to go the sleep study route. Fortunately, they have a company that would give me an excellent cash price to have the study done.

A few days later, I show up for my split study. The entire process was straightforward and not at all awkward like I had feared. My neurologist gets the results about a week later and it turns out that I have severe OSA and that I need to get a machine ASAP.

I picked up my machine yesterday and had my first full night with it last night. Obviously, I'm not 100% cured with just one night with it but I will admit I do feel different. It was a little strange sleeping with something attached to my face but I was able to actually sleep on my back without snoring or waking up gasping.

Hang in there...

swknight wrote:I picked up my machine yesterday and had my first full night with it last night. Obviously, I'm not 100% cured with just one night with it but I will admit I do feel different. It was a little strange sleeping with something attached to my face but I was able to actually sleep on my back without snoring or waking up gasping.

Hi,

Some folks are better or worse depending on what position they sleep in. In that case, sleeping on the back causes the most issues. You might want to experiment with sleeping on your side. Try one side, then the other side. Since you appear to have an auto machine, watch your max pressure levels. You might notice that you need much less pressure sleeping on your side. In my case, I need about 1/2 the pressure, which is far, far more tolerable. The difference might not be much in some cases, but it is worth giving it a try.

Please don't worry about feeling strange about wearing a mask. You wouldn't fell strange if you got a filling for a bad tooth, or a cast for a broken arm. In your case, your breathing is broken, and hopefully the mask and machine will fix it. Also consider how strange it would feel if you fell asleep driving and ran over a kid playing next to the street, or killed one of your own kids. OSA can be life threatening, so don't feel strange about getting treated.

-john-

Hooray to both of you, great stories and very encouraging. Keep us updated.

Good News! I used the Instructions posted on this site to reset my average data display and got a good nights sleep last night in Auto mode from 8cms-12cms. My AHI was 3.2, down significantly from the 8cms setting that my sleep center titrated. Despite being sick and having a nasty ear infection, I felt suprisingly good today.

What do people use to dry their hoses out after washing them? I have one of those Coleman airmattress blowers and noticed that the hose fits nicely onto the included valve attachment. Not sure if it would dry completely if I just let it hang all day or not.

Also, my 90% shows as 12cms, which is my max. What does this mean?

DLB

Little tip here - unless you live in a particularly dusty environment, I wouldn't bother much about the hose - I don't think a lot of us do and I don't even think most take apart their masks, etc. every day, let alone weekly, possibly just swish them once or twice in mild soapy water and rinse, and/or use wipes on the cushion. You could always make a little drawstring sac of plain white cotton for the mask end of things for daytime and that should keep things pretty clean.

Good report. As I've been told here one night does not a trend make so you'll need a few more nights to gather more data. The 90% pressure means that for 90% of the night you slept at 12cms or Less. If that still remains the same after a few nights you may need to change your settings but the experts can help with that if necessary. This is where having the software is most important so you can see exactly what's going on. Good job. Dori

DLB wrote: Also, my 90% shows as 12cms, which is my max. What does this mean?

It means that a good bit of the night you were at or very near your max. The machine sensed the need to go there for whatever reason. Software would maybe show if it were related to chasing leaks or events or both.

Since you have been ill I wouldn't worry about it too much. Your AHI is very decent. If your leak average is also decent and you seem to be feeling pretty good (after the illness is gone) then you may simply be at your "sweet spot". If it were me and I continued to see the 90% at or very near my max, I might give 13 cm max a try just to see what happens. Wait till you are well past the illness though if you decide to tweak things a bit. If your leak average seems high, then work on leaks first.

Hi Pugsy, I was hoping you'd jump in. Question, would you do anything about raising the minimum?

One bit of advice...

You seem very excited and ready to get in there and tinker. That's normal. But I urge you to resist. Don't make ANY changes based on a single night...ever. If you get into that, you'll be endlessly chasing shadows. You have fairly decent numbers where you are now. Let things settle.

FIRST, get well! Any results you record while sick are pretty meaningless. Use this time to practice reading the screen and playing "What if?", but stay outta the settings.

Second, get your mask leaks under control. Until your leak line flattens out, your AHI will swing wildly. You don't need to add setting changes into the mix making it worse. You also need to to become accustomed to sleeping on CPAP before your numbers mean anything. If you lie there awake for a significant (and changing!) portion of the night, how could you possible see any trends?

And if you don't wash your hose, you never have to worry about it being wet! Unless you are using it on your vacuum to suck the crumbs outta the sofa, it's cleaner than the air you breathe all day. (Remember, your hose only sees filtered air...)

Good luck! (and take things slowwwwwww...)

DoriC wrote:Hi Pugsy, I was hoping you'd jump in. Question, would you do anything about raising the minimum?

Oops, forgot that part. I don't know. Toss up. This is where it would be nice to see the reports. I know many people do better and like a narrow window. Since OP AHI is very, very decent right now, probably not at this point. If pressure fluctuations bugged me or AHI was different, then yes bump up the minimum. I prefer one change at a time myself and the max would be my first choice just because it seems to want to be up there anyway.

We all know I have a huge window and it works well for me. The span of 8-12 or even 8-13 really isn't that huge of a spread. Let's just say that with an AHI less than 4 and feeling good otherwise I would give it some time and see how things go in a week or two. Without the software reports to see what is going on, I wouldn't do anything drastic. We don't know number of hours asleep. We don't know if there was a couple of leak spikes that might drive up that 90% number but not be enough to screw up the leak average much. We don't know possible position or REM relation to events. So much we don't know.

I will say this, I originally started with 7 cm minimum and now I have 10 cm. Since I have become accustomed to 10 cm when I go back to 8 cm I feel rather stifled. I wouldn't suggest increasing the minimum and becoming accustomed to it unless I really felt the need (confirmed elevated AHI) because then I would be used to it and going back could be more uncomfortable.

All in all the 8-12 range seems to be working well for the OP and if it were me I would make only very, very small changes (if I made any changes at all). Get past the current illness and see how things go. Patience. Maybe, just maybe bump up the max if OP is curious and/or gets the software to really see what is driving the pressure up.
Otherwise, if it ain't broke....

Oh, I don't clean the hose that goes from machine to mask. I do good to get the nasal pillows washed daily. Whatever lets a person sleep better is okay by me though. I just don't see the need for all this religious daily routine of cleaning everything unless something happened to get it dirty.

DLB, welcome to the Fraternity/ Sorority of the Hose. There is definitely a "pledge initiation period." <Little bit of encouraging humor> Hang in there, and go through whatever it takes to get used to xpap therapy--whether it be Cpap, Bipap, or Autopap. You will eventually feel much better as you become a longer term member of the "hose society." Keep on Keepin' on.

Pugsy wrote:

DoriC wrote:Hi Pugsy, I was hoping you'd jump in. Question, would you do anything about raising the minimum?

I will say this, I originally started with 7 cm minimum and now I have 10 cm. Since I have become accustomed to 10 cm when I go back to 8 cm I feel rather stifled. I wouldn't suggest increasing the minimum and becoming accustomed to it unless I really felt the need (confirmed elevated AHI) because then I would be used to it and going back could be more uncomfortable.

This is such good info for me since I don't know what things feel like inside that mask. Now that you've explained, I know why Mike felt so uncomfortable when I experimented with reducing his pressure to 11cms. First he asked me if the machine was even On and then he started to breathe much harder than usual. Of course when I asked him to explain he just said something feels "different". thanks, Dori