by Nona Aguilar
(New York, New York - USA)
There are many things I wish I had known when I was first diagnosed and started sleep attached to my beloved CPAP machine.
To save you the initial stumbling, here are four things I had no idea about when I started this journey 14 months ago. Maybe this will help someone else.
1. Get a Data-Capable CPAP machine: I had no idea that there are CPAP machines and there are CPAP machines. I just took what the doctor ordered.
I didn’t know better.
It was only later that I learned that there are data-capable CPAP machines. Their advantage? They would allow me to monitor my sleep events. If things aren’t going well, it’s easier to “connect the dots” to figure out why I’m not sleeping optimally. Did I eat too late? Did I drink alcoholic beverages too close to bedtime? Could the reason I woke unrefreshed have to do with unsuspected mask leakage problems?
Data capable machines are more expensive but for many, possibly most, are worth the cost, especially if a lot of the expense is covered by insurance. As it is, I’m going to invest in my own machine or wait until I’m eligible for a new one. But if I had known, I would have insisted on a data capable machine and used it from Day One.
2. Visit and Use Sleep Apnea Forums and Support Groups: I had no idea they exist until some four weeks after I started using a CPAP machine and started poking around the Internet looking for answers to some of my problems (instead of pestering my doctor). The forums are a first-rate source of useful, helpful information from been-there, done-that fellow apneacs. (Note: “apneac” is not a word, but it should be! Please join me in using this neologism.)
But getting back to the forums: Without them, how else would I have known about data-capable machines? Or found the other valuable nuggets of advice and worthwhile suggestions that made a difference during the (especially challenging) early days of adjusting to my beloved CPAP machine?
Post queries when you have problems, especially when you have problems. You will be amazed by the helpful advice you will receive. Apneacs can be surprisingly generous.
I visit, post queries (and occasionally offer suggestions) on several U.S.A. forums (where I live) as well as forums across the oceans. Wonderful insight and advice flows back and forth from them. Indeed, for the first few months after I learned about the forums, I spent many hours a day on the forums.
And support group meetings? I rarely miss them. Indeed, I travel by train almost 90 minutes each way to attend meetings held far from my New York City home. The meetings are worth it!
3. Be Prepared for a Lot of Bad Nights In the Beginning: I had no idea that it was going to be, ahem, a challenge to get used to sleeping with my beloved CPAP. After all, I had a really good night of refreshing sleep the first time I slept “masked up” at the sleep clinic for my titration study. I also had all those probes attached to my forehead, chest and legs – and still I slept well, enjoying my first good night of sleep in decades. I assumed there would be clear sailing ahead.
The first night on my own was awful. The mask felt strange and didn’t seem to fit. I couldn’t get used to the tube (where the devil should it go?!) The blowing air annoyed me. I’m a mouth-breather, but I didn’t have a chin strap -- and didn’t know to get or ask for one. What a night!
The next few nights were no better.
I called my doctor (and I’m lucky: he’s very responsive) and got a chin strap and an air pressure adjustment. But soon enough my mask was a problem: it caused skin abrasion.
If I had known about the forums, it would have been easier to navigate those initial weeks months instead of struggling on my own. That said, I was persistent. That’s important: Be persistent. Thanks to my persistence, I found the forums, support groups and was willing to try different things that ended up making a difference for me.
And, by the way, I still have my bad nights. They’re just a lot fewer and I keep plugging. And I visit the forums and attend support group meetings.
4. Try Different Masks: I had no idea that the mask that seemed most unappealing to me would turn out to be one of my favorites. A respiratory therapist at a support group meeting urged me to try it. I did so -- with great reluctance.
He was right.
Why was I so reluctant? Darned if I know.
After that positive experience, I realized that I should try different masks. And did.
I now have four different masks. I rotate among various types every night. I have a favorite –and then a previous “lesser favorite” moves up to become my favorite.
If I had to select just one item from my “I had no idea….” list, the choice is easy: The second. If you visit and use sleep apnea forums and support groups, you’ll get answers and advice that will help you navigate the early difficulties of adjusting to your treatment.
You have no idea how helpful the forums and support goups can be.
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