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Your Personal CPAP Success Story - Post Here
RE: Your Personal CPAP Success Story - Post Here
Tonight will be the end of my first week on a BIPAP. I've had two sleep studies, both were done after spending time in a hospital with breathing problems and also receiving treatment for my Mysthenia Gravis (a autoimmune disease that affects muscles). The first one was a disaster and a waste of time with inclusive results. The 2nd sleep study was entirely different. This time they showed a video about OSA, CPAPs and BIPAPs. Then, in addition to the monitor stuff, I was fitted with a full face mask (I'm a mouth breather) in CPAP mode. During the night, they switched the machine over to BIPAP mode. All in all, I slept pretty good that night. My pulmologist put me on oxygen while sleeping and then came the long wait (couple of weeks) for the results. Having the oxygen generator in the same room was a noisy environment and the machine generated extra heat.

A couple of days before the DME waas due to come I started out trying to find more information about the various machines available. The more I read, the more concern I became that I might be given a less desirable machine, so I called the provider and simply asked - "What kind of machine will you be bringing me?" Answer: "What the doctor prescribed" - Question: "What is it?" Ans: "It could be one of several types" .... I'll stop there since I never really got a good answer. I then called the doctor's office and asked the same thing. The nurse told me that they didn't specify a machine maker & type since they don't know what the DME has but the did give me the phrase that they used.

When I had called, I had been reading several of the manufacturer's pages with machine descriptions and the phrase that she used (I wish now I had written it down) matched almost exactly one of the Medicare descriptions for the code used to describe both a Respironics PS System One 60 series as well as the ResMed S9 VPAP S and VPAP Auto. I now felt comfortable that I had a very good chance on getting what I wanted based on recommendations.

I did get 90% - my doctor did not specify a heated hose, but I did get everything else...

It has now been 6 nights and I'm pretty satisfied. I have ordered a cover for the hose as well as a liner from Pad AS Cheek which came in today. Also, while reading some of the specs on oxygen generators I noticed that one claimed to support a 50 foot hose so I asked my DME person and she kindly provided me with one and also verified the output - I need 2 ml so the machine has to be set at 2.5 ml to compensate. This allowed me to move the beast to another room resulting in less noise and a cooler room.

In general, I've been able to tolerate the mask and have slept fairly well. I'm still making minor adjustments to my sleeping environment. We have an adjustable bed and when I started using oxygen I has raised the head up. After day #5 I lowered the head and raised the foot a bit since I was sliding down the bed and waking myself up. Also, after reading about various methods of holding the hose in the air - I decided to try that also. I happen to have my grandfather's old coat & hat pole rack - the kind with hooks at the top (I was watching an old 1952 movie today and there was one in one of the office scenes) - so I put it next to the bed and it is working fine. It won't be very good for traveling :-) so I may have to either but or make up one out of pvc pipe.

I checked out my data with sleepyhead today and my last AHI was 1.38 and my average was 2.8. A week is a pretty small sample, so I'll continue to watch. I'm also keeping a small journal and recording each morning how I slept. This has already proved to be interesting - Monday night I thought that I had slept pretty good, with just a little bit of restlessness - and I was surprised to find that the data recorded a period of time around 4am with multiple events and an AHI that hit 15.

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RE: Your Personal CPAP Success Story - Post Here
Congratulations! It looks like your therapy is working well for you. A week's worth of data is much more important when it's your first week. We're seeing an AHI under 5 and that tells us all is well. Keep an eye on your leak rates, too. Nothing else will matter if your leaks are too high.

It's pretty common to see clusters of events that way. I think it's our brains adjusting to the fact that for the first time in very long time there's no need to keep waking us up to breathe. Kind of like the brain comes out with a burst of it because it missed it so much.

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RE: Your Personal CPAP Success Story - Post Here
Well my story started when I was diagnosed with a serious eye condition - central serous chorioretinopathy and unfortunately that resulted in the loss of macula vision in my left eye. My opthalmic surgeon, who BTW is the best in the business here, advised that the most common causes of this condition are stress, steroid based medications and OSA. Down the track I had a polysomnography done which revealed that I was suffering from severe OSA with RDI of 91/hr and AHi of 89/hr - scary stuff!

So down the path of therapy I headed and I am pleased to say that since commencing therapy and after 40 days with my PAP machine my AHi is now averaging 0.44.

There have of course been some ups and downs, fighting the damn mask etc but overall the experience has only improved and the health improvements are remarkable, especially with the eye condition.

I hope that others on the path that I have followed will be encouraged by my progress.
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RE: Your Personal CPAP Success Story - Post Hereq
Yep! What a great topic!

I have been a CPAP user for about 8 weeks now. Positive results from day 1.

I didn't even think I had a sleep apnea problem. Here's the story.

At about Febuary last year I had a problem with whooping cough (apparently - not actually diagnosed) an upper respiratory infection none the less. What a bloody pain in the ... Neck, I coughed for about 5 months. Anyway I was very short of breath, a constriction in my throat. Sometimes a forced cough would develop some discharge. How long can you put up with this congestion? I still have it to some degree.

Since then I have seen two GPs, a respiratorary specialist (many, many tests which have proven I have asthma - pass rate over 12% - I rated 11.9% so just under) a ENT specialist, a breathing 'expert', a sleep specialist + many more. Anyway, I didn't think I even had a sleep problem.

I actually thought I was a good sleeper, I thought it was an excellent party trick to snore.

Well the story is, since I had the problem 20 months ago, my vocal chords and throat have never had the chance to recover because my snoring/ apnea won't let it heal by itself. I have been told by my latest expert that it will take about 3 months to get back to normal.

In the meantime I have lost 10 kilos and hope to lose another 10 and one day to not have to wear my Darth Vader mask. I still have this constriction in my throat but it's getting better!

OK, here's the real thing. From day 1 on CPAP, I have never felt so better! Fair dinkum, in 8 weeks only 2 afternoon naps. Before I was looking at morning naps + afternoon naps. My first CPAP night was 6.5 hours and I was jumping out of my skin the next day, what the hell was going on before that?

I have SO much time in the day. I have found my perfect mask (still looking for a more perfect nasal mask - help needed here) and no longer;
Toss and turn
Get up to wee (I just do it in the bed- just kidding)
Flop my feet around
Need a 9:00am nap
Need a 10:00 am nap
Need. 1:00pm nap

My life has REALLY been transformed but the funny thing is that I NEVER thought I had a sleep problem. My wife always reckoned that I stopped breathing and I just shrugged it off as a good party trick. Plus the snoring was a bonus!

For those that are wondering whether or not to have a sleep test, stop dithering and just do it! I have since found how dangerous my 'condition' really was. 140 seconds without breathing, try it now.

Good luck and I hope you find as much success as I have. I'm hoping to get off CPAP eventually but I need to lose that extra 10 kilos and see what happens.


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RE: Your Personal CPAP Success Story - Post Here
My first night was September 27. We then left on vacation for a week and I took the machine with me.

I was anticipating a wretched horror the first night. It was just the opposite. Like many, it took me a little longer to fall to sleep..I normally conk out in a minute...this took several. I also felt like I could hear myself breathing loudly. However, I went to sleep, woke up one time for the bathroom, went back to sleep, and got up with my alarm.

My wife reported no snoring, talking or tossing and turning...not at all and she could not hear the machine. This was great because she has been sleeping in a different bedroom for months!

I took the unit on the road for the next week. No problems, except an occasional mask leak while turning. The good news is that I go to sleep on my right side and usually never move again. I also began to fall asleep normally and the breathing sound was not noticeable.

About the third night I began to remember dreams. It has been a long time since I remembered a dream, if I even had one. I also stopped waking up to go to the bathroom, I would wake up briefly but not to even get out of the bed.

The really good news is the headaches stopped almost immediately and I regained energy levels and stopped drowsing at work and falling asleep on the couch by 7pm. A week into using the CPAP my blood pressure is down.

I have averaged 7.9 hours per night for the first 21 days. I do not believe I will have any problem hitting my insurance company's compliance requirement. Not once have I awakened in a panic wanting to rip the mask off.

To say I am pleased is an understatement. Tonight I will get my software up and running and take a look at the data. I have one of those cellular monitors attached to my S9, but the tech is having problems retrieving the info.

I have learned a lot from this forum. Thanks

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RE: Your Personal CPAP Success Story - Post Here
awesome!! glad that it is going so well for you and your wife!
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RE: Your Personal CPAP Success Story - Post Here
So it's been 30 plus days.... AND IT AS BEEN GREAT, LIFE CHANGING GREAT!

If I know it was going to be that good I would have signed up for this 15 years ago.

So my 30 day averages:
Use is 8.4 hours/day, That's great since I work shift-work and have a bad habit of skipping bedtime when I work nights... I know bad.
AHI is 1.8
Central apnea 1%
Mask fit 100%!!! and it feels pretty good!

I can sleep on my back! First time in 20 years
No more meds for my arthritis! No more pain!
Hypertension meds, decreased by 66%
I feel great, awake!
No more afternoon naps!
More energy for play!
Plus a lot of personal reasons!

Very hard to get an afternoon sleep in before work, no tired.
I find myself staying up late, not going to bed at 9pm.

So it has been a great 30 days and now we submit the paperwork and the machine is mine. But I already told the RT that he can not have it back! I'm keeping it!

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RE: Your Personal CPAP Success Story - Post Here
Thanks for sharing, Stan. Don't let them switch your machine out for a brick.

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RE: Your Personal CPAP Success Story - Post Here
Welcome Stan and well done, just keep everything consistent.
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RE: Your Personal CPAP Success Story - Post Here

I have now completed my first year. I feel GREAT! I was not crazy about using a CPAP machine. Still not, but the benefits outweigh everything else! I put off going to the doctor and just accepted falling asleep watching TV as "normal". The family's comments about the snoring volume was laughed off. However, the increased weight gain and lack of energy to do anything about it, pushed the necessity of a doctor's visit. I finally caved in and went to the doctor, who referred me to another, who referred me to a sleep study (split study, half normal sleep, half with mask). I fully expected to get a mask on sometime during the night but woke up in the morning without anything. Was a bit disappointed as that meant (I thought) that I didn't have apnea but had other issues. 2 weeks later, the doctor got the results and reviewed them and said I had severe apnea (AHI of 34) and they wanted me in for a second night to set up the CPAP. I went, got my mask and tried to settle in for the night. As a side/stomach sleeper, I really dislike the nasal mask. However, I needed it and wanted it to work, so I persisted, and throughout the night, they increased the pressure, finally settling on 10. Another week or so went by to get the results published and sent over. Got the call from the office that they were sending my prescription over to the DME provider. I called the DME to push things along. The next day they responded they had received the prescription but no pressure reading. Called the doctor, called the DME. When that was straighten out, talked to the DME. I wanted a fully auto machine with the ability to read the data card. The prescription was for a fixed pressure, so called back to the doctor who called me directly and wanted to know why I wanted an auto machine. I explained that I wanted the capability for future use if needed and as a computer engineer, I wanted the data capability. I promised that I'd stay with the fixed setting for at least the first month until we had some data to work from. He agreed and sent yet another prescription to the DME. Finally got the DME to give me a ResMed S9 AutoSet with Humidifier. Have had the unit for about a year now. It made such a huge difference, that I even brought it with me while travelling. The unit has been to Maryland, NC, Florida, Utah, Idaho, Wyoming and Alaska! I will not travel without it. I took it to Yellowstone and Denali. Have to stay in a place that provides power but it is worth it. The unit is extremely quiet. There are the usual issues with the mask but overall I feel so much better that I am committed to staying with the treatment. Monthly I take the SD card and extracted the data. I use the SleepyHead software (a big thanks for the developer!). Both on my own and with the doctor's advice, I have played with the pressure numbers a bit. My AHI now averages 0.8-1.5. SleepyHead had much more detail which I am still trying to figure out and understand. It is a bit scary how much privacy information is in the raw data (what time you go to bed, what time you wake up, if you wake up during the night, ...) but the DME said they needed the data for the first month for insurance to help pay. Also received the bill for the sleep study (> $4000) (hopefully both nights and not just the first might). Insurance covered some of it but I still had a big bill to pay. Seriously, it is worth it to be awake, well rested and alert all day long. However, I've learned you can do the test at home for much cheaper. The home tests doesn't collect as much data or the same type of data, but it can tell them if you have apnea. I feel good, so it's time to leave this post and go to the gym!
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