Don't Get Complacent

One thing everyone with CPAP should keep in mind, don't get complacent.

I had done CPAP for many years. I knew (or thought I knew) how to set my machine. I had figured out what pressure I needed, etc.

Recently, I started having some problems that I didn't associate with apnea. I was having nausea, heartburn, etc. It had sort of crept up on me over time. At first, I thought it was flu or some other bug. Even though nausea and heartburn can be related to heart problems, the symptoms weren't really right for them to be a heart problem. (I've been through this with my doctor before.) I'd also went through a lot of tests for GERD and other problems several years back.

So, I went to my GP, discussed a lot of things, decided it wasn't likely to be heart trouble, but he said a trip to the cardiologist wasn't a bad idea anyway if I wanted to. He also gave me some Nexium. I took the Nexium and zyrtec and got a little bit of relief, but my problem would come and go anyway. I went to the cardiologist, but a quick EKG, and an echocardiogram that didn't show any real problems. We were getting ready to do a nuclear stress test. Very expensive and several FUBARs were involved in setting up the test. I was miserable and was getting a little panicky.

Luckily, before we actually did the stress test, I got to thinking and turned up the pressure on my CPAP machine just as a test. It was like throwing a switch. All my problems went away.

Lesson 1: Don't assume because your apnea appears to be under control, don't assume it stays under control. In my mind I had crossed apnea off as one of my problems.

Lesson 2: Followup care can be important. I had stopped going to my CPAP doctor. Since my original machine was a dumb CPAP with no data logging, I don't know if we would have figured out anything anyway, but followup care can be important.

Lesson 3: I thought I knew how to set up my machine, but I think I screwed it up. I had an auto CPAP machine, but I didn't have it in auto CPAP mode. I had reduced my pressure, thinking I'd get auto adjustment, but didn't study the machine enough to know that I was simply getting a reduced pressure all the time.

Lesson 3a: Just because it says "AUTO" on the machine doesn't mean you're getting "auto."

Lesson 4: You're not as clever as you think.

On the good side, I did lose 20+ lbs. It's the new "Too Sick to Eat Diet (TM) "

Very, very true. Pressure needs do not stay constant. Weight, age, and muscle loss are all contributing factors.

Ahh, now I see why the questions about the software. You want access to more information.

If you have trouble with the software, let us know.

Also dont forget as these companies "improve" their CPAP gear to make it where more people can tolerate it (water it down), dont discount that as a factor in feeling worse. A major gear change can easily screw you up if the gear is not what you were used to and is not cutting it.

Eric

All good points.
Glad to hear you got some things figured out.


Den

Pugsy wrote:Ahh, now I see why the questions about the software. You want access to more information.

If you have trouble with the software, let us know.

Thanks. I think that just keeping apnea in mind if I have problems in the future would do the trick. Plus figuring out how to use my machines properly.

However, more information is always better, and I am a geek anyway, so the software is probably worth the cost as long as it actually works with my configuration.

Boy can I relate to this post. Dont get complacent. It is really true alright. Several years of excellent CPAP therapy went out the window with simple equipment failure and then failure to find/acquire equipment that duplicated what I was used to for several years. Then I find out that much of the equipment has dramatically changed, supposedly for the better...I find a lot of it has been watered down...probably to sell more gear and to improve compliancy.

Problem is,change is not always a good thing.

I did not have an adequate backup machine and knew it. I did have a backup machine but knew it did not work well like my original but was lazy and did not want to fight with my DME. So I ignored the issue.

The time to find a good backup machine is when you are doing well on your current CPAP gear. When you are not feeling well is not the time to have to scramble to find a new machine that did what your good one did.

I agree all of this can indeed sneak up on you. One week you are doing OK, then bam, your machine breaks and you are backsliding like crazy. Next thing people are wondering why youre so tired and so irritable and you lose your job and people start not wanting to be around you.

Definitely dont get complacent and always, ALWAYS have a backup machine that you are 100% positive does what your good machine does...provide proper therapy.

Eric

Arch, glad you're feeling better and finally realized that you hadn't set your machine properly. Your experience might help some others who might now check their own settings. It didn't hurt that you followed up with your Dr as well. Good job.

DoriC wrote:It didn't hurt that you followed up with your Dr as well. Good job.

Thanks, DoriC, but, I didn't actually "follow" up with my doctor. I started with the (non-sleep) doctor, got no useful info from them. I thought about the CPAP machine and fixed the problem myself. After that, I didn't follow up with the doctor, other than to tell the heart doctor that changing my CPAP fixed my symptoms and to cancel the $1600 stress test.

I'm not really blaming the doctors. They're not watching me sleep, etc. My GP did spend a bit of time discussing my problems with me, but didn't make the connection to apnea. I see it as my own responsibility to be aware of my own condition and treatment and make some of the connections.

Now, if I'd been a "good patient" ($$$) and revisited ($$$) the doctor who prescribed my original dumb CPAP machine over the past 6 or 7 years, maybe I'd have figured out the problem eventually. Maybe he would have prescribed a new autoset machine, possibly with a monitoring card and followups ($$$) and I would have caught it earlier.

Sometimes, following the "standard medical practice" is a good idea.

Of course, I could have been paying for followup all these years and the doctor wouldn't have recognized my problems any quicker than I did.

Maybe.

Maybe I'm dumb to have not stayed fully in the "official" system. I'm definitely dumb for not paying attention to my CPAP problems.

I think my biggest mistake was an all too common human failing.

1) I had this problem. (apnea)
2) I fixed this problem at least temporarily. (CPAP used religiously, even for naps.)
3) Time passes, things are OK. No apnea.
4) Mentally, cross apnea/CPAP off the list of my problems.
5) Problems develop, apnea/CPAP never enters my mind as a possible cause.

I think we make this kind of mistake all too often.

1) I had one beer an hour ago. I'm good to drive. Nothing bad happens.
2) I had two beers. I'm OK to drive. Nothing bad happens.
3) etc....
4) Polished off a six pak. I'm god to dirve. I do ths a few tmise a week and nothing ever happens. I now how to hlod my liqor.
5) Honest to drunk ocifer, I wasnt god when I hit that kid.

Now while we're on the subject, what other medical conditions am I not monitoring or working on that I really should be?

Maybe I should really get serious about that weight loss and exercise that I've been letting go for years because I have been "doing OK." However, I'm sure glad I never let some quack talk me into lap band surgery now that they're figuring out the problems they cause long term.

What non-medical items have I been complacent about?

archangle wrote:

DoriC wrote:It didn't hurt that you followed up with your Dr as well. Good job.

Thanks, DoriC, but, I didn't actually "follow" up with my doctor. .

I guess I didn't read that right! Well, you did get some Nexium and an EKG!

archangle,

Your tale also points to why its so important to have machines with full efficacy data that patients can access. If you hadn't been given a brick of a machine, you'd have likely seen those AHI's creeping upward and figured out that you needed a bit more pressure---perhaps even before becoming symptomatic again.