I was just thinking a few thoughts, and I thought I'd thunk them out here.
My sleep doc and clinic is the VA center in Portland. They diagnosed me, did my sleep test, and provided me with my equipment.
When they gave me the machine, they said "This is your machine now. We won't take it back."
"Ok," I thought; "if it's my machine I'm going to figure out what makes it tick."
That's when I discovered apneaboard.com and began my journey.
I have done great. At this point I really can't think of anything I would change or try to improve (which is a little frustrating for me). Things are really going well. Yes, sometimes I'll have a night where the leaks are a little goofy or something, but overall I have no complaints.
So I've been waiting for my latest followup appointment with my sleep clinic. I've been looking forward to it so I could show them what a good soldier I have been. I just kind of want them to know that their efforts on my behalf have paid off and I am very appreciative. I want them to know that when they told me the machine was mine, I took charge of that and my own health condition, and made it my business to do what needed done to get a good result. So yeah, brag a little. Besides, they think everyone is different. So I just wanted to show them I was the same.
This morning I woke up from another one of those "this is the best ever nights of sleep ever" experiences. If you have not had one of those "this is the best ever..." you will. They're great. If it weren't for the freight train running through the room (also known as the puppy chase) I would probably still be asleep. I was in a groove. Ahi? 0.0... Hours sleep? 9. Leaks? under 3. Pressure? Humming right along at the 11'ish range. Flow limit? Calm as can be expected. Number of times awakened - potty break? 0. ............a great night.
So I cancelled my appointment.
Here's the email dialog I had with the sleep clinic:
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Good morning sleep clinic guy,
I have an appointment scheduled with you guys on August 18th. I've been looking forward to this as I enjoy visiting with your team. However I am doing so well with my therapy that I really think I'll just be taking up space. So if your scheduling is such that you would be able to see someone else sooner if we cancelled my appointment I'm good with that.
If desired, I could send the data from my SDCard as an attachment for your techs to review and update my records. What you will see is my ahi stays much below 0.5 daily. My leak numbers are good, and my usage is typically 8 - 9 hours a night. What it won't show is how pleased I am with this whole thing. From the very beginning when the sleep lab hooked me up to all your strange gadgets to now. It has been a most positive experience.
I would like to give back somehow. I know that the drop out rate from cpap therapy is quite high, and I know the learning curve is also sometimes challenging for people. If there is something I can do to be helpful to others please sign me up. Sometimes lay-lay interfacing might be a good thing.
Anyhow let me know if you agree that we could/should skip the August 18th appointment.
..and thanks for the Resmed P10 mask. I highly recommend this thing to others, and I was the poster child for "can't breath through my nose."
--- Retired_Guy
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Mr Retired_Guy,
I'm glad to hear you are having such a good experience with you CPAP device. Please remember to order new supplies every 3-4 month that way you are not dropped from our Program. I will cancel your appointment for 08/18/14 and if you need to see a CPAP Tech just give us a call or send me a secure message and I will call you to schedule. Thanks and have a wonderful day.
sleep clinic guy
(Actual names redacted to protect all the good folks at Homeland Security.........)
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What is my point in all of this? Just simply this: I know many of you get discouraged as you begin this journey. I know sometimes it's really tough to get it all figured out. I know sometimes you just want it all to go away. I know all the bad stuff........
But I also know the bright end of the tunnel, where you no longer snore like a fog horn, you no longer fall asleep walking across the room, you are not banned from the bedroom because the cats can't rest. No longer do you have to feel guilty because you take so many prilosec or other gerd pills that you have created a shortage in the rest of the free world. You will drink coffee if you love it, not 15 cups a day in order to survive. I also know that my body feels better than it has in years. I know my heart is better than it was. Ecologically, I know I save water by not flushing 5 times a night. I know these things and many others will come for you too.
What it requires is committment to the program. A willingness to be the solution and to understand what your body is doing, what the machine is doing, and how to make the two enjoy doing it together. What I used to call "become one with the mask." I do not advocate doing anything without the knowledge and approval of your medical team. I do advocate personal responsibility to the extent that you figure out what you feel needs to be done and if necessary educate your docs as to why you have reached this conclusion. Reasonable and responsible health care providers will work with reasonable and responsible patients to achieve the best outcome for their condition. If you have one of the "less enlightened" docs, one that just cannot be educated, then move on. It is your body, your machine, your life, and your responsibility.
It takes work. Sometimes lots of work.
But we're here to help. That's what Superguy set out to do when he invented this site. So you have already taken the first step: you're here too.
Good job with that.