Lessons Learned

With all the other challenges facing us in 2020, it occurred to me that sleep apnea patients run the risk of getting lost in all we are coping with.

I started therapy in 2017 after being diagnosed with complex, severe sleep apnea. In layperson terms, that is both your brain not communicating the necessity to breathe coupled with obstructive apnea. In addition, it is severe on the apnea rating scale, in my case 48 events per hour. After two sleep studies (yes, sometimes it takes more than one), I was prescribed a BiPAP Auto Servo Ventilator. In simple terms, that breathes in and out with and for me to minimize hourly events.

In the course of the past 3+ years, here are my takeaways from my journey with sleep apnea:

  1. For me, #1 and most importantly, is be an active partner in optimizing your care. That means keep communications open with your sleep doctor and your durable medical equipment (DME) provider. I know these people by name and do not hesitate to call or schedule appointments. Remember, they deal with hundreds of patients and it is easy to get lost in the crowd if we do not speak up.

  2. If available, use the Apps providers have so you are able to track your progress daily. I check mine every day…more on this follows. Even for the pros, wearing sleep apnea headgear can be daunting on a good day. This said, always play the long game knowing that periodic less than desirable results are just that…stay the course.

  3. My data was telling me I was averaging just over 5 events an hour with leaks more than I desired. After over two years on nasal pillows and cushions, I weighed in with my doctor and was prescribed a full face mask. That may seem more cumbersome than a pillow, perhaps. For me, that inconvenience rendered what are now events averaging .2 and leaks less than ten. So, the lesson learned here is there may be room to improve but you need to be your own advocate.

  4. I also changed equipment due to issues with the first one I was provided. Do not hesitate to tell your DME if the one you are using may not be right for you.

Finally, I signed up to be a Peer Mentor. Sometimes the best resource you have available to us may be another therapy user who can share first hand experiences and coping skills.

I am not an expert…just a person who understands the value of my therapy must be internally driven and not imposed. Once you make that transition…and own it…the results will speak for themselves. If this helps one reader than it served its purpose…good luck!`

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Thank you David so much for posting this! Now is the time to work together and help each other out! We appreciate you and all your support!

Outstanding. That’s how we do it.

Can some one advise me on how to retrieve replies to my posts? dancatena@verizon.net

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Can, I can only speak for my experience. I receive replies via individual emails each of which are linked to my post where I can review all received. I hope this helps, Dave

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Sorry. Can should be Dan.

Hi all! Thank you @DavidP for sharing this. I’ve read it and all I can say is it did serve its purpose well.