"please keep me updated about oximeters "
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What's the one thing you wished you knew when you first started XPAP treatment?
I just started 3 weeks ago and I'd love to get the tips from all of you. For example, after a few nights...my mask was leaking a ton. (I'm still not sure it fits correctly..) but I think my problem was my night-time face moisturizer. So.....now I go to bed without any moisturizer....and that seems to help.
What do you wish you had known when you first started out?
What do you wish you had known when you first started out?
Views: 215
Replies to This Discussion
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Permalink Reply by Mike on
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I wish I were clever enough to ask this question when I was first starting off with xPAP -- it would have saved me so much trial and error. I think the most important thing to know is that there are a lot of artificial obstacles out there to getting well with this treatment, like equipment providers who have financial incentives to give you the cheapest, least helpful machines out there, but that if you keep the mindset that you will push through and educate yourself about your options, that the reward can be enormous: feeling better than you've felt in decades and adding years to your life.
I tried to capture some of my thoughts on this subject in this ABCD's of Sleep Apnea post. Just remember, that's just one person's advice. We can all learn something from each other.
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Permalink Reply by Mary J on
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Thanks so much, Mike. I think another obstacle that is frustrating me is I'm not sure how much my mask is leaking....but my machine was purposely set up not to give me that data. (The data is there....and I've figured a way to get it....but now I need to learn how to interpret the data.)
When I go back for my first checkup I will address this with my doctor. I think he will work with me. This is my health and I believe in learning what is going on with my health and sleeping patterns. Thanks to this site - I learned about Dr. Park's book and I ordered that last night. I do appreciate seeing how much there is to learn here! THANKS!
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Permalink Reply by Judy on
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Goshes. I was fortunate that after my sleep evaluation study I deliberately postponed my titration study and hit the bricks so to speak online. I already knew from a previous experience of some 10 years ago that some local DME suppliers are sheisters. I also knew from the same previous experience that some sleep doctors are a PITA and some are half way decent.
Online I learned that I was not going to accept anything less than a fully data capable xPAP and that I would buy the software and necessary cable reader and to make the doctor aware of this so "we" knew if "we" were going to be able to work together as a "team" or not. (Unfortunately, whilst I did find that doctor he left my sleep lab before we were able to get my pressure "just right").
I had a great sleep lab, they were able to tell me which local DME suppliers my secondary insurance was contracted with and that the Resmed S8 Elite w/EPR would most likely provide me w/the easiest access to and amount of data available via the LCD screen as the fully data capable CPAP's software were all for professional use only.
I made a great choice in sleep labs and a poor choice of my local DME supplier options. Whilst it was the second local DME supplier when I switched who helped me find THE right mask for me, it was my sleep lab manager who best knew how to fit a mask and taught me most on how to fit my masks.
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Permalink Reply by sleepycarol on
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Finding a sleep apnea forum helped me tremendously with my treatment. I think it should be required of all new patients that they become educated so that they can make informed choices and get the best treatment options best for them, and bottom line shouldn't be the DME's pocketbook.
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Permalink Reply by Gordon Osmond on
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Folks, I know it is sometimes a hastle but could you please spell out things like DME and PITA. They are North American abreviations and I cannot understand them. Thanks.
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absolutely --
DME: "Durable Medical Equipment" provider
PITA: "Pain in the Ass!"
Gordon Osmond said:Folks, I know it is sometimes a hastle but could you please spell out things like DME and PITA. They are North American abreviations and I cannot understand them. Thanks.
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Im not sure that this is where I want to put this answer or not but.... I wish I had known the cost of those masks!! I have excellent insurence and have had no problem with getting my supplies. The ins bought my machine and every 6 months I get a new mask. Last month I got a new mask and as it turned out it was defective so today I was talking to my provider and they are telling me that ins said they wont pay for another one this soon even though its defective. So I asked how much it would cost me to buy one and she said they retail for $800!!! I just about fell out of my chair! I swear I will NEVER again throw one away. I have been throwing them away every 6 months for 9 years!! So here is my new plan. Im going to start keeping my masks and if there is anyone on here that has no ins and cant afford masks I will share. All you will have to do is get a new liner.
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Permalink Reply by RockRpsgt on
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I would rather be with you Gordon!
Gordon Osmond said:Folks, I know it is sometimes a hastle but could you please spell out things like DME and PITA. They are North American abreviations and I cannot understand them. Thanks.
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Great post! I am not on CPAP so I am going to enjoy this one for the most part. My comment is about your mask fit. If you are not already doing this it is very important that you are lying down when you put your mask on. This will help you get a better "sleep position fit". Other than that remember that no one involved in your treatment is going to have all of the answers. Analyse all of the info and make an educated decision based on what YOUR BODY is telling you. No one knows you like you. Most importantly never give up.
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Permalink Reply by Donna on
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I would love to learn how to keep my mask on at night. I wake up and I have taken it off.
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Yes. I wish I had known about the moisturizer. I learned to be sure and clean the area of my face and nose where the mask fits from this site. I use a nose cup mask...so now it doesn't slip around. I also had to experiment with a humidity setting. When I changed from the mask to a little cup nose mask, the humidity setting needed to be lowered to a 2 because water would accumulate inside the cup and start spewing out. The other night CPAP hygiene that helps is to use some saline solutions....there is a liquid and a gel called AYR. I make sure that my nasal passages are lubricated and open. Usually I have to use it again in the early morning. It has become a part of my sleeping routine. I have also tried several different pillows. There is are several special pillows for CPAP users that are shaped on the sides so that they don't interfere with the mask and push on it causing leaks and discomfort. It is an excellent solution for side sleeping. I also have a small soft down pillow that works well too. This has all taken me several months to customize for myself. Just observing, writing about problems on this site as they arise has certainly helped me make a successful adjustment. I feel really great! and awake. Melba
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Oh, and one more thought Mary. Using some kind of padding on the nose...like a little piece of Dr. Scholls moleskin for corns helps if you have problems with irritation. I customize the shape and cut away only a little section of the adhesive...just enough to stick it on to my nose bridge. Now that I use a nose cup instead, I find that the side straps leae a significant imprint on my cheeks...the traces of which remained all day. I found that just putting a cotton quilted makeup remover pad under the straps on each side relieved the pressure and stopped the imprinting. I think I will make a couple of little soft quilted cloth pads or perhaps a little soft sleeve that can fit over the straps. Maybe a cute print. You can also make or purchase a cloth sleeve that will slide over the tubing so that it doesn't feel cold and plastic on your skin. Also takes away some of the "medical" appearance.....becomes an "art" statement. I gotta find some fun in this somewhere!!! Also is tactically more appealing and comfortable.
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