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got my new ASV machine
Hi its Ron and I just wanted everyone to know that I spent Thursday driving the hour and a half to go get my new machine. This machine is like a CPAP or BiPAP but it also has the ability to record your breathing so that when you have a central sleep apnea episode it will mimic your breathing pattern until you get back into your regular breathing rhythm. At least this is the way my wife and I understood the explanation, The tech was very nice but had only programmed one other ASV machine. She went by what my neurologist prescribed for me. I was not happy when I saw that the starting EPAP pressure was 15 and it goes to a maximum IPAP of 25/5 with a rate of 10. We tried on two full masks and decided that the large one worked best. My tech asked if I had spoken to my neurologist at all about the test results or if he had explained the test results. I said "NO he did not" and I haven't heard from him at all - only from the office when they set me up to see you". I have no idea why my pressures at set the way they are and of course the tech can't reset pressures without the doctor's orders. So here I am, at home, and I have gone through three nights now of trying to sleep with this new machine. The face mask is probably too large after all, because when I lie down to sleep it leaks, causing the alarm to go off many times during the night. When the face mask was adjusted to my face I was sitting in a chair. Had I been given the chance to lie down in the bed maybe I would have known before I got home that the mask was too large. Now I have to either drive back to GA or possibly get a smaller mask mailed to me. I still believe that the pressure is also set too high - but because I have not even spoken with my neurologist or gotten a return visit call, I feel like, again, I have been dropped ! Do I need to get yet another doctor, do I need to get a pulmonolgist to take this up, do I need to call the neurologist's office and speak to the office manager - DOES ANYONE HAVE ANY SUGGESTIONS?
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Replies to This Discussion
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Permalink Reply by Mike on
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They should have fit you for the mask lying down. that's a no brainer. the ASV is a very sophisticated and expensive piece of machinery that most doctors and providers don't know a heck of a lot about since the technology is so complicated and novel. that said, as a first step, i'd advise you to get a full copy of your initial sleep study and your subsequent titration study. i would then post it here as pdf files, so that you can get the benefit of wisdom of the collective group. then we'll take it from there. sound like a plan?
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Permalink Reply by Ron Sowell on
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ok, Mike. Not sure how to post PDF files! Not too good at this stuff. Will let you know when I get it and maybe you can walk me or my wife through it. I called dr office to make appt to have study discussed but couldn't get in to see him until mid June, so asked them to send copy of sleep study and dr notes to my doctor here. At least I go to him next week and he will go over it with me and give me a copy! If he doesn't understand it I will go see my ENT who got me going on this thing in the first place. Geeeeezzzzz, what a mess!
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Ron, when the time comes and you have your study, just private message me or simply respond to this forum post and i will make sure to walk you through what you need to know.
Ron Sowell said:ok, Mike. Not sure how to post PDF files! Not too good at this stuff. Will let you know when I get it and maybe you can walk me or my wife through it. I called dr office to make appt to have study discussed but couldn't get in to see him until mid June, so asked them to send copy of sleep study and dr notes to my doctor here. At least I go to him next week and he will go over it with me and give me a copy! If he doesn't understand it I will go see my ENT who got me going on this thing in the first place. Geeeeezzzzz, what a mess!
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Hi Ron, I resemble your confusion..about 6 weeks ago I was in a very similar situation, feeling like I did not have the information I needed to be successful with my ASV machine, and very unsure of who I needed to call to fix it.
This forum provided a lot of insight for me, and now, I have completed my first 30 days with a new machine and new DME. It has not been a bed of roses, but has been 1000% better than what I encountered on my first go round. I had to become uncomfortably forceful to get what would work for me..and am happy to say, I am feeling better every day, and actually appreciate the airflow I am getting from my ASV, although it may take a while to find the perfect mask.
It is a shame that what is recommended on this forum as common sense, is unfortunately not widely practiced.
You might check out the thread on my experiences, I believe Mike titled it 'Sherry's 1st night with ASV'.. there is some great advice in there from the forum.
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