12 years of CPAP without follow-up

[VikingGnome]

I was diagnosed with OSA twelve years ago. My AHI was 25.4 at that time. I was given a ResMed Sullivan V Elite with passover humidifier set at 10 psi. I have been using it faithfully every night for 12 years. Nobody ever told me I needed to see my sleep doc annually to be sure everything was ok. About 6 months ago I start having excessive daytime sleepiness. It was horrible. I even fell asleep in my bowl of cheerios.

Finally saw a new sleep doc and had a new sleep study two weeks ago. Got the results today. My AHI was 66.7 meaning I stopped breathing from 10-40 seconds EVERY MINUTE of the study. My oxygen sats never went above 90%. My new pressure is 15 psi.

Just goes to show that faithfully using CPAP without adequate follow-up is dangerous. Who knows how long I've been sleep deprived and dangerously hypoxic? And all that time I thought I was doing just fine.

Just got my new set-up today. I can hardly wait to go to bed tonight.

ResMed S9 Elite with H5i Humidifier and ClimateLine Tube
ResMed Mirage Activa nasal Mask

[bdp522]

Many/most of us do our own follow up by checking our data regularly. I check mine daily and keep an eye out for problems. I've been at this about 6 years and never saw a sleep doctor or had any follow up. Typical AHI 0.3. I adjust my ownpressure when needed, and my GP knows and approves.

Brenda

[Sheriff Buford]

I met a guy a couple of months back and he had a similar story. He had a machine that would not provide nightly data. He mentioned that he needed to have another sleep study to see how he was doing. I told him about the newer machines that provide data. He had no clue the existed. He even told me that he had worn the same mask for years...

Reminds me... I need to track him down... do a follow up... may need to tase his butt...

Sheriff

[khintul]

I kind of don't agree - I was diagnosed 11 years ago w/AHI of 47, given a "dumb" CPAP set at 11, and used it faithfully 100% of the time until 6 months ago. At that time, I decided I wanted a new smaller machine that would be easier to travel with. When I asked my doc for a prescription so I could purchase on my own, he sent me for a new sleep study to be sure the settings were OK.

The sleep study showed the same setting was still good for me, so I got a new S9 Autoset, and it's been great. My old machine is now sitting in the closet to be there as a backup if needed.

Bottom line, I never saw anyone from that first study 11 years ago to now, and clearly did fine. I firmly believe that with this condition it's very important for us all to be our own advocates - find out all you can find out from whatever source (this board being a MOST EXCELLENT source of information) and go from there.

Karon

I was diagnosed with OSA twelve years ago. My AHI was 25.4 at that time. I was given a ResMed Sullivan V Elite with passover humidifier set at 10 psi. I have been using it faithfully every night for 12 years. Nobody ever told me I needed to see my sleep doc annually to be sure everything was ok. About 6 months ago I start having excessive daytime sleepiness. It was horrible. I even fell asleep in my bowl of cheerios.

Finally saw a new sleep doc and had a new sleep study two weeks ago. Got the results today. My AHI was 66.7 meaning I stopped breathing from 10-40 seconds EVERY MINUTE of the study. My oxygen sats never went above 90%. My new pressure is 15 psi.

Just goes to show that faithfully using CPAP without adequate follow-up is dangerous. Who knows how long I've been sleep deprived and dangerously hypoxic? And all that time I thought I was doing just fine.

Just got my new set-up today. I can hardly wait to go to bed tonight.

ResMed S9 Elite with H5i Humidifier and ClimateLine Tube
ResMed Mirage Activa nasal Mask

[robysue]

khintul,

I'm not sure I understand what you "kind of don't agree" with.

The OP is not saying that everybody's situation will deteriorate. But he is making the point that some people's OSA will silently deteriorate without their fulling being aware of it if they are both given a "dumb" CPAP and receive no follow up care from a doc. And the consequences of having your OSA silently deteriorate through years of no follow-up care while using (a dumb) CPAP can be very serious. And hence folks need to be aware that this kind of thing can and does happen rather than blindly assuming that their original CPAP setup will be good forever.

In short, the fact that you've had good results with using a "dumb" machine and having little or no follow up care for 11 years merely means that you were NOT UNLUCKY enough to have serious problems develop with your CPAP therapy: Your initial titrated pressure was correct (for many people, it is not); your leaks are apparently well enough under control to not adversely affect therapy (for many people, problems with leaks are a severe and ongoing issue); your OSA itself did not get worse (which is what we all hope for, but some of us are unlucky and the OSA does progress in spite of treatment); and your pressure needs did not change (for many people even a modest change in weight or a modest change in the OSA leads to a change in the pressure needed to splint the upper airway open.)

In other words, the fact that you did well for 11 years while using a brick and receiving no follow up care does not mean that everybody will do "good enough" under the same circumstances.

The whole point of providing routine follow-up care to an OSA patient using CPAP is to make sure that things really are continuing to go well in terms of therapy and to provide early intervention if things quit going well in terms of therapy. And the whole point of providing an OSA patient with a full efficacy data machine is to make sure that the doc, the DME, and the patient all have the data needed to do some serious troubleshooting if and when problems develop. Even if the patient never looks at the data, having the data available for the doc to look at if/when the patient starts to complain of a return of symptoms is important. By looking at the machine data, much of the time, the doc will likely be able to properly diagnose the problem without the additional cost of a new sleep study.