Sleep doc says I'm a star

[Sireneh]

I had my one-month follow-up appointment with my sleep doc yesterday. He looked at my data and seemed pleasantly surprised with my compliance. I told him I want to buy my equipment online and he is fine with that. We do have some local businesses who will charge a one-off fee for equipment support, so I wouldn't be totally stuck if something were to go wrong.

I told my doc that I wanted to educate myself and analyze my data. He said that looking at my data, he would not have been able to guess whether this was the data of someone who was feeling better or not. He thought the best way to know how my treatment is working is to use it and feel better, period. Not that he was necessarily discouraging me from doing it per se, but suggesting that the value of the data is secondary to just going by the way I feel. I still think I'd like to know what's going on. I'm sort of a hands-on kind of person, and combined with an innate curiousity about how things work, I wanna know what's going on, you know?

[Slartybartfast]

Lots of folks will tell you they felt fine until they were diagnosed with OSA. In my case, that was certainly true. I THOUGHT I felt fine because it crept up on me so slowly, I just thought that's how you feel when you're in your 50s. I didn't know it was the OSA that was doing that. And I wasn't even aware of some things like the repetative dreams I was having that I was smothering, under water, enclosed in a confined space with no air, until after I got on CPAP and those barely remembered dreams came back to me.

So, yes, how you feel is important. But there's no substitute for being able to measure what your body is doing while you're asleep. And if you're already on CPAP, then there's no reason not to have access to, and monitor, your data. It's like flying on instruments. Sure, you can be up in the clouds and follow your compass and likely be near where you want to be when you descend into the clear. But isn't it better to know moment by moment exactly where you are?

[Emilia]

I have to take exception to what the doc said to you. If you peruse many of the threads on this forum, you will read the stories of folks who went about life feeling 'fine' and had no idea they had OSA. Yes, they may yawn a lot or get a bit sleep during the day, but otherwise, without someone to tell them they are not breathing at night or snoring like a freight train, they are clueless about this underlying and deadly condition. My condition was mildly moderate, and even after telling my doctor for over a decade about my relentless fatigue, and having her chalk it up to thyroid (which was a bit off and now corrected), peri-menopause and then menopause (now well past those!), and still feeling like crap..... she NEVER even suggested OSA. It took a cardiologist, who I went to for a stress test, to suggest an overnight pulse oximetry test only to discover that my O2 plummeted during sleep. Who knew??????? Thus, I came to be sent to a sleep doc and have a sleep study. The rest is history. Truth be told, I am 7 months into therapy and I am still tired....albeit not as much as before. I get great therapy and have good data. I am just waiting to feel energetic again.... I've lost 18 lbs. and that will help me on the road to being a bit more active, I hope. I've been nursing a high grade sprained ankle and had PT for several weeks so I need to gradually start to do some short walks.

Bottom line..... we all need to monitor our data and not just go by how we feel... IMHO. One without the other is just not a full picture to guide us on our journey to good health. You are right... a patient needs to know what is going on---fully! Best of luck and keep up the great therapy!

[Bluecat]

Before CPAP: felt good, never sleepy
Since CPAP: feel good, never sleepy
BUT: AHI 108 during sleep study, AHI 1.5 average since beginning CPAP
I don't feel the difference in my everyday life, but, thanks to data, I know I am much better than before!
So, what you feel is a first impression, but it is the objective data you get from the machine that will tell you the effect the treatment has.
Still, it is nice to have a doctor that doesn't shun you when you tell him you want to monitor your data.

[wahootodd]

i felt like crap for years and snored like a grizzly bear; sleep study showed my breathing stopped 45 times an hour ! the biggest difference i can tell is the times when i have not used the cpap i feel much worse than when i do use it. it is a pain to use the cpap but the results are positive and unfortunately the current corrective surgeries are not successful enough for me to even consider going under the knife. hang in there, keep using the cpap even when you get discouraged/agitated with it, hopefully one day in the near future some procedure will come about that has high success rates !

[SRSDDS]

My sleep study AHI was 88. My data from my machine shows it now at about 3.5 after a couple of months. Before cpap, I woke up feeling crappy and tired easily. Now, with the great AHI, I wake up feeling crappy and tire easily. Data capture is great!
Stephen

[ColCpap]

How funny... I saw my doc yesterday for my 1 month visit and the nurse said I was the gold star winner (31 out of 31 days, avg 7:35 a night).

I wonder if this is an industry term....?

[Rickd1]

I got one too

[Sireneh]

We stars are all using the same machine. Coincidence?

[ColCpap]

Maybe there is something in the name... RemSTAR. I think we could start a conspiracy theory

[Tip10]

He thought the best way to know how my treatment is working is to use it and feel better, period.

Wonder if he'd give the same advice to a diabetic? "No need to test, just take your insulin and feel better, period"

If a doc were to give me this kind of advice I'd have to start seriously thinking about whether or not I needed to start looking for a new Doc.

[TalonNYC]

Many doctors are not willing to allow you to be a partner in your own healthcare. It's very sad, and very true.

I have "fired" doctors for doing this. I know they have a lot more training, and I will defer to them and their expertise, but if my opinion isn't even taken into consideration, then they're done.

I am an active partner in my healthcare. I will see the test results, I will do research, and I will let you make the decision you think is best AFTER you have heard my opinions in addition to your own. Compliance requires that I understand what I am doing as I am doing it, otherwise I have no idea if I'm missing something along the way.

Sorry for the rant, but this is a HUGE pet peeve of mine. Asking a doctor to see the results and discuss treatment, medication and options is NOT belittling their expertise, it's being a health care advisor, which is their job.