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Permalink Reply by RL on January 16, 2010 at 11:05pm

O.K., so that would be about 8 hours per night, giving one year, 37 weeks and one day; plus the extra week for extraneous reasons (by my imperfect calculations). When did you first start with an xPAP? That sounds like great compliance! How high does the counter go? Did you switch because of problems with the first machine (S8 Elite)?

So far (19 nights) I am averaging a little over 7 hours per night.

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Permalink Reply by Judy on January 16, 2010 at 11:33pm

I started on CPAP 08 Oct 06; three nights on a Respironics pre-M Series Plus compliance data only CPAP which was delivered late on a Friday afternoon and returned first thing Monday morning, followed by a visit to my sleep lab and a switch to another local DME provider and the Resmed S8 Elite w/EPR fully data capable CPAP that same day.

Most insurances will replace an xPAP at 5 year intervals. But I've read of xPAPs that are still running strong at 10 and 12 years in the various apnea support forums.

There were nights I got little more than 4 hours sleep and nights I got 9 and 10 hours sleep and then nights I got anywhere in between. There were some rough spots along the way but each change whether pressure or mask (I've gone thru about 12 masks before finding 2 I like really well and do pretty good with) there was always enough improvement to encourage me to keep at it. I was switched to the VPAP Auto bi-level due to my having COPD.

Ha! 19 nights and you are already sleeping 7 hours!!! Good on you!

My first 30 nights on CPAP were the worst 30 nights of sleep I'd ever had. But a 1 cm pressure change gave me the incentive to continue. Then a loaner APAP brought about another 1 cm increase in pressure and I did fairly well for quite a while. Well enough that I let things slide and gave my sleep doctor a break before I started bugging him again that things were decent but could be better and ended up w/another in-lab titration and this VPAP Auto.

I can be a stubborn ole broad. My first in-lab study was about 1996 - 1998. I was started on CPAP and I stuck w/it for about 2 1/2 months. But by that time the bridge of my nose had been sliced and diced so badly by the mask ..... when I went back to the DME provider and they told me "too bad, so sad, your insurance won't buy another mask" I went home, grabbed the CPAP and mask, took it back to the provider and told them what they could do with it.

And then went 8-10 years w/lousy sleep. Nothing like cutting your own nose off for spite!!!!! I'm good at that and never seem to learn. Altho I've mellowed a bit thru the years.

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Permalink Reply by RL on January 17, 2010 at 12:46am

Are you feeling noticibly better with the consistency? I think it can be hard to tell when there are other challenging physical conditions along with the apnea. I think I have beginner's luck! I am trying not to take that for granted, as I can see that things can come up at any time and throw everything off, cause new problems. For the first week or more, I was still getting up once per night to use the bathroom. Then I found I would sleep without waking for six+ hours. Then last night, I got up once about 3 hours into the sleep, after feeling very tired in the late afternoon and evening. I felt very tired upon waking this morning also. I'm not sure what was going on but have not felt untired for a full day yet. It was starting to feel better for parts of some days though.

I just saw my new sleep doc, a pulmonologist, yesterday. I think he will be good, but it is too soon to say for sure. Mostly, he just said we should wait and see, come back in 2-3 months. It was encouraging to hear him say that over time, the central apnea might go away, if it is triggered by the obstructive apnea. Also, losing a little weight might help, once I have the energy to exercise consistently.

I think you have to be "stubborn" and persistent to get the best treatment. It also takes time for docs and other medical folks to get used to patients who want to take charge of their own therapy. When I was at my DME trying to get a printout of my cpap card data, I overheard a sales rep discussing with the RT some training they would be doing for the RTs. The sales woman said they had just done a "revised version" of the training at a support group for patients, and that it was better that way, because the patients couldn't handle all of the information. All I could think was that she should meet the Sleep Guide crew. The attitude had a definite condescending tone in my opinion. The RTs could not give me my data printout, because the software update they were supposed to have was not there or working, and their IT department in India could not give an estimate of when they could look into it. Each time I have mentioned I would be requesting this, they look at me like they don't know why I would want this, and they are certainly not used to patients asking for it. I said "I'm GOING to be doing this" (in other words: get used to it). Fortunately, my sleep doc offered to put the "heat" on them to get the data for him to review also.

I will remember your challenges when I come up against similar, no doubt I will sooner or later.

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Permalink Reply by sleepycarol on January 17, 2010 at 11:07am

Yep, in order to achieve the best optimal treatment, we need to take charge of our therapy, in my opinion.

It burns me that, we as patients, are assumed to be ignorant. I do believe that we are in a small minority though. Many do not care about their treatment, have no clue what type of machine they use, their pressure, etc. They go with the flow and whatever they are told. When they don't feel results, they wonder why.

My son-in-law had his titration study done last Thursday, January 14, 2010. I have been stressing to him it is important for him to take charge of his own therapy. I was proud of him when he came home and said that he asked what his pressure would be and was told it would be 14. Of course, until the doctor reads the report he had little else he knew. He has said he will ask me when getting his set-up so that he gets a fully data capable machine.

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Permalink Reply by Judy on January 17, 2010 at 1:25pm

Right now, I'm not doing so well as I was. BUT - I'm doing a heck of a whole lot better than before CPAP, and a lot better than before VPAP ..... but also, right now, not so good as I was doing earlier on VPAP.

I used to get up 3-4 times a night to urinate. Since shortly after starting CPAP that has been reduced to once a night. I was also on a 2 hour sleep/wake cycle. Sleep two hours, awake 2 hours, sleep two hours, awake ..... then it was about 4 hours sleep, the trip to the bathroom and usually back to sleep another 4 hours but still an occasional up two hours after the bathroom trip before I could get back to sleep and then usually only sleep another two hours. Now USUALLY I'll get in 4 or even 6 hours of sleep before the bathroom trip and USUALLY go right back to sleep for another 2-4 hours.

Naps are another issue. There were times I needed and took a 4 hour nap about 2 in the afternoon. Most times now my naps are around 2 hours - when I need to take them. And often it is not until 5:30 or even as late as 8:30 before I feel the need for one - if I feel the need for any at all. There are times I run out of steam - but the need for an actual nap has been GREATLY REDUCED and I can go days w/o feeling the need for one. I was down to a full week, possibly more, w/o the need for a nap.

Good luck w/this new sleep pulmo. He does sound promising. I don't know that I'd go a whole 2-3 months tho. One month is turning out to work best for me. Of course, I've always had some data to work with right from the get go since starting w/the Elite CPAP. Am I to take it that you have the new PR SystemOne and that is the problem w/no software to access the data??

You said: "... When I was at my DME trying to get a printout of my cpap card data, I overheard a sales rep discussing with the RT some training they would be doing for the RTs. The sales woman said they had just done a "revised version" of the training at a support group for patients, and that it was better that way, because the patients couldn't handle all of the information. ..."

That comment would has so INFURIATED me!!! I'm old enough and crochety enough I'm afraid I would have had to speak up!!! I am SICK of the "dumbing down" of America instead of REAL attempts at EDUCATING and encouraging!

You said: " ... their IT department in India could not give an estimate of when they could look into it. ..."

Groan. A local DME provider w/a IT department in India!!!

You said: " ... Fortunately, my sleep doc offered to put the "heat" on them to get the data for him to review also ..."

Good on yuor doctor!!! Too bad you can't just dump this DME provider and get a better one!!!

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Permalink Reply by Judy on January 17, 2010 at 1:32pm

I agree that we are in the minority - but - I don't think as small a minority as the "pros" would like to believe or have convinced themselves of. Given half a chance at some respect, some information and education passed on gradually, not crammed down our throats in 10 minutes of rushed contact, encouragement to ask questions, patience in delivering answers and allowed some choices there would be a LOT more interested patients taking an active part in their therapy.

sleepycarol said:

Yep, in order to achieve the best optimal treatment, we need to take charge of our therapy, in my opinion.

It burns me that, we as patients, are assumed to be ignorant. I do believe that we are in a small minority though. Many do not care about their treatment, have no clue what type of machine they use, their pressure, etc. They go with the flow and whatever they are told. When they don't feel results, they wonder why. ...

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Permalink Reply by sleepycarol on January 17, 2010 at 2:45pm

I agree Judy. I think it depends up on the doctors themselves, as we see all kinds of responses to post on the forums about the various responses patients get.

I know a friend of mine was diagnosed with diabetes, that could be controlled by diet if followed. Her doctor sent he to a dietician to help her formulate a diet she could live with. She made several trips and gained a lot of info. My doctor never mentioned that it would be helpful to see one when I was told I had slipped over the line. Do I want to switch doctors, no as my friend's doctor is a jerk (he was my mother's doctor prior to her death).

Yet, my doctor is very open to my active role in my therapy for sleep apnea. I have talked with her several times about it and have given her printouts of my data for my files.

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