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What do you wish you would have known in the beginning?
#11
1. I am not alone. No matter what my present condition, diagnosis, or treatment might be, there are those who are similarly situated and willing to share their experience with me. Adding encouragement along the way.

2. You cannot believe everything someone in a position of authority tells you. You must continually question what they are telling you and the reasoning behind it. If they say it is "technical" or some such, then you explain you will start looking for someone who can provide answers to your question. Take notes so you get it right the first time. Don't be embarrassed to ask for clarification or repetition.

3. You cannot trust your DME provider to tell you the truth about competitive equipment and supplies. They earn their bonuses doing what is best for the company, not necessarily the user or patient.

4. You will not necessarily kill yourself if you tweak settings (within reason) and record the results. I personally discuss what I plan to do with my physician and ask him about contraindications. I also share the results with him.

5. There will be normal and customary expenses involved in experimenting with different masks. I have tried mixing and matching headgear on my Mirage Activa LT and have found that a headset from Phillips Respironics could easily be adapted and provided additional comfort. Since my DME will not let me mix and match, I eat the cost.

6. Making equipment cleaning a habit pays off in less chance of bronchial inflammation.

7. Aroma therapy is probably a placebo and you get used to the scent so quickly the benefit dissipates after a short period.

8. Equipment placement on your nightstand might benefit from some dual-stick Velcro to avoid accidently pulling the lightweight AirSense around -- possibly with catastrophic consequences if the unit drops and water gets into the electronics or works.

9. There are always flaws with my current equipment that makes me look forward to the next iteration -- even though you can't benefit from it unless your machine is replaced.

10. Install monitoring software and keep learning. Without a reference point to start the discussion, fact becomes conjecture, and results become more iffy.

You may switch the order of these items around, but they came off the top of my head as I thought of them -- so they are not listed in any order of importance.

Best of luck fellow patients.



"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#12
I believe I first started getting sleep apnea in 2002 or so, wish I had treated it then. But the technology would have been far more primitive back then, so maybe it's not so bad to start it now.

Also wish I had known how to tweak humidity and purpose of heated hose. Had to learn about it in here.
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#13
I wish I knew this before starting ~600 days ago:
1) just because you think you are a mouth breather, you should not automatically go with a full face mask. I tamed an F10 and its leaks for 4 months before I got a P10. Since day 1 of the P10, I keep my mouth shut without any effort.

2) AHI is not the only metric to ensure sleep quality. It is the only metric you can measure. So chasing AHI number to zero is not a worthwhile exercise.

3) Hardest part while tweaking pressure settings is that your body takes its own time to adjust to the new setting. I have watched my I.E. Ratio get normal after 90+ days of same pressure setting. This is because of how Aflex works.

4) just because you have an APAP, it doesn't mean you should use variable pressure.
Started APAP 4-20, Closed range to 7.5-14, then straight 8.0 w/ Aflex 3
RDI always below 1. But sleep much much better at straight pressure.
Started on F10, Tried Quattro Air successfully. Finally settled on P10.
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#14
I wish I'd known how much more comfortable I would feel using the Climateline hose and that just using it seems to lower my AHI by 1.
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#15
I wish I would have known there was another DME in town that charges about 55% less for equipment and supplies than the DME my doctor referred me to.
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#16
I just wish that I had looked for and found this forum early in my therapy instead of wasting 2 years before I found it.

Best Regards,

PaytonA
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#17
1.) I wish I'd sought help for my sleep problems about 15 years before I actually did.

2.) How much more comfortable APAP is for me than fixed CPAP.

3.) That nasal pillows are more comfortable and leak way less than the masks I used.

4.) Finding this board and all of the good people who contribute to it.Smile

5.) SleepyHead and wifi SD card.

6.) That the treatment actually works for me and that it's been a relatively easy 15 years.

Thanks to the doctors, researchers, manufacturers, RT's, DME's, and support personnel who made a difference in my life.

Thanks fellow CPAPers!Sleep-well
Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
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#18
I wish that I had known that the fear of ending up on CPAP that the sleep doc put me in was just BS. I wish that I had gone on CPAP then and there, years ago. The intervening years have been far, far worse than CPAP. I lost years of my life to his exaggeration of CPAP.
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#19
Yes, I regret not getting a used auto machine and mask right away. It took 5 months from the day I made that initial appointment until I had a machine through Medicare. They don't care that you are suffering every friggin' day. You have to go through the loop and the appointment game is ridiculously long.
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#20
Wow... this is all quite wonderful. Thanks for sharing everyone, I will definitely benefit from it.
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