New Machine Reccomendations

[hueyville]

49er, I doubt the doctors that kicked me out of their programs are going to see me personally but I do know how to get my information in front of them. The doctor that originally referred me to them is actually more upset about them kicking me to the curb than I am. He gets weekly updates on how my treatment is going. Once I reach my goal of a two week period of AHI 5.9 or below he has agreed to personally send the reports to them through his office direct attention to both with his personal notes on my progress due to my personal interest, hard work and doing everything the current sleep doctor has ordered.

Both of these doctors are like the new one and have their own sleep labs. He wants them to see they have missed five night of sleep studies (four in past three months and after we hit the two week mark with the ASV machine and my body has adapted to ASV somewhat we will do a final ASV titration before end o year) both of the other doctors have a referral system with their DME's for sending new patients thus they have lost out on their referral fee on my Respironics 960, five sleep lab studies just in the past few months at 3,400 per month billing rate then after the BC/BS contract price adjustment between 1,600 and 1,800 per visit. I have been going into the new doctors office every two weeks with a hard copy printout of my Respironics software report and my sleepyhead report. The weeks between when I see him I go in the office to meet with the respiratory technician who downloads the data off my card for their records, reviews it with me and answers any questions I might have. The doctor spends 30 to 90 minutes with me with by insurance standards is a level 4 visit paying maximum dollars for an in clinic visit. The respiratory technician generally spends 30 to 45 minutes with me and bills at the same rate as a P.A. Thus the two doctors that kicked me to the curb threw over $10,000 i the trash can and like my current doctor says I do most his job for him. He does not have another client that walks in with the exact information he needs/wants printed with one copy stapled in order for his files and my copies in a three ring binder that I keep updated weekly. I am the only patient with sleepyhead data showing my SPO2 blood oximetry data on a nice little graph and and excell spreadsheet showing my blood pressure numbers from when i first lay down, five minutes after my machine starts up then once an hour during the entire night then a final measurement a few minutes after I wake up and turn off the breathing machine. Every morning while downloading and viewing the previous nights data I use the comments feature in sleepyhead to type up how I slept that night, how many times I remember waking, did I remember dreaming, if they were good dreams or bad and any other data I think may be relevant.

I am escorted into the exam room by his nurse who weighs me, checks vital signs, updates medicine changes from other doctors and asks her series of standard questions and enters my responses into the computer. A few minutes later the doctor comes in and asks her if she has any comments or opinions based on her examination and discussion with me. When she finishes she wanders on out about half the time. Doctor then quietly reads all the data she has entered into the computer and reviews the notes from my visit with the respiration technician the week before. Then he takes the current Respironics software report that I brought, then the sleepyhead report and scans every page, reads my notes and any day that has anything odd he makes sure to look at all info regarding that day including my personal notes in what call the sleep diary and on those screwy days where the AHI was in the 70 to 140 range he checks the Excell Spreadsheet from my blood oximeter which samples every 30 seconds and the blood pressure report that samples every hour. This portion of our visit is 90% complete silence as he absorbs what he reads except when he asks an occasional question for additional info. Usually after he lays down the last report he sits quietly in his chair apparently lost in thought for about five minutes then we start our discussion. Once he covers everything he wants to discuss, he gives me the floor to ask any questions I have. If I have some idea about an alteration in treatment he listens and 70% of the time he says implement my idea for a week and then when I come in the following week to see the technician we can decide if my suggestion moved me in a positive, negative or ambivalent direction and decide whether to continue for the next week till I meet with the doctor and decide where we are going. At present we are averaging just over one lab visit per month. I have one more visit to the lab in December and by year end I will have been with the new doctor for six months and have five lab visits plus my shiney new 960P bipap/biflex ASV machine which thus far is a miracle.

I cannot be happier. Yes, I would like to be getting the AHI numbers of less than 1 that a lot of you are getting but that may or may not ever happen. This new sleep doctor after two weeks said he would consider our work a complete success if we got my average AHI down to 15 or a little less. We are at 10 and still working toward improvement. My personal goal is AHI of 5.99 or less. I am starting to think we may achieve the "or less". I know everyone does not have the insurance I do thus tweaking this hard is not possible with the doctor. That said, until I started working with him I made more progress on my own than with the previous three doctors. The only thin I could not do was write my own script for an ASV machine though two of my other doctors would have. What they might not have been able to do is convince BC/BS how necessary it was for me which allowed my DME to process it as a purchase instead of a lease. Had it gone through as a lease i January when my benefits rolled over and copays/deductibles started back up I would have been making the lease payments for the first $1,500. Instead I will be able to work that deductible out with a doctor that has need o my services and we basically "swap" checks several times a year. When what I owe him and what he owes me hit a point where they are about equal, he pays his bill and after I deposit his check I write his office a check to cover what I owe them. While it is still money changing hands and legally, I would rather give my copay/deductible checks to a facility that uses my services regularly.

So how ever you do it... With doctors, home study, a combination of both or whatever you can eventually find something that works for you. Do not give up even if you have to fly to Jamaica and see a witch doctor. I made most of my initial progress on my own after the two other doctors kicked me out of their program due to fear of my severe case. My new doctor tells me and I believe he is honest in saying it that 1/2 of the progress I have made under his care came from my own obsessive effort to gain knowledge and collect data. We have a month to tweak then I will ride the pony as it is end of December till all my out of pocket is met other than one monthly office visit. So for all you lurkers who are having a tough time with your apnea, even worse time adjusting to cpap/bipap/ASV or whatever the doctor it throwing at you. Mask fit difficulties (took six different masks to find right fit for me), feeling like your suffocating, head gear discomfort, chin straps and the extra suck they add, questions fro family and friends, having the xpap treatment make sleep harder than without in the beginning, doctors that treat you like a herd animal pushing you through the processing plant without listening to you, or whatever. Take your treatment SERIOUS, get involved. fire your doctor and keep trying new ones till you find one that treats you like a human, suffer through the sleep studies. wear your stupid, leaking, uncomfortable mask blowing air i your eyes, down you throat till your stomach fills up like a balloon, and all the other misery that can be associated with xpap therapy until you find the combination that works. It is out there. If your one of the lucky ones that took to it like a duc to water then consider yourself lucky and encourage someone else who is having problems with understanding rather than do like some did to me and say they had no issues, it was easy and I must just be doing something wrong or exaggerating. Basically it took me three years before I had my first really good night of sleep with treatment. Now it is six nights in a row so even if it goes goofy on me again I know it is possible to get a good and safe nights sleep. Do not be like the three friends of mine that did in 2012 due to sleep apnea related events. If not for seeing others die and deciding I didn't want to die from something as boring as passing in my sleep because I ignored a know disease I might already be number four in my group of friends dead of apnea.

[hueyville]

Do ASV machines "learn"? I am a week into my 960 and my graph of daily numbers is slowly trending down. My average AHI has now dropped to 9 and each day my AHI falls a few more decimal points. It is currently set with.ipap and epap.at minimum 10 and maximum 25 with pressure support of 6.

[Pugsy]

Do ASV machines "learn"?

Learn as in remember what you did a week ago? Not night to night like you are thinking but your body/brain does learn and that's why we tell people using ASV machines that it takes time for things to get optimized.
There is some "learning" on a nightly basis as the machine reacts to your breathing each night but your body/brain is what is really doing the learning. You are learning to breathe with the machine and it becomes more second nature.

I suspect that you will continue to see further downward trend over the next few weeks...that's normal.

[hueyville]

I just finished night 10 of my ASV treatment. All is still doing well as my comfort level has increased all around and my numbers have stabilized. My average AHI has continued to slowly slip down and my 10 day average is now down to 9.7. That is a far cry from weekly averages in the 50 to 70 to 90 and worse. If it stays where it is I will be happy but would prefer to get it lower. The doctor knowing I am prone to twisting knobs, pressing buttons and turning wrenches had me promise to not monkey with my machine for the first two weeks. I see him Wednesday to discuss my case, machines. I want to be able to tell.him what I changes I want to make and why. Also want to know how to impliment them. So I need a technicians manual and some tips on this Respironics 960P. I have always run humidity at 1 and now with heat run it at 1. Do I experiment with that? I feels this is not greatly important. Minimum pressure support is one thing I want change along with raising minimum epap.

[Pugsy]

Start a new thread with posted images of your recent night's report. Put ASV in the subject line to get the attention of the ASV users here who can offer their thoughts. They won't be looking in this thread.
We need to get their attention and will need to see the reports to have any idea what is going on with the AHI and what pressure setting might be improved upon. They will need to see what the machine is doing and what the AHI breakdown actually is.

Humidity level..personal choice and normally that is considered fair game to play with on your own.

[jmrobert48]

This was most encouraging. I pick up my PR ASV machine on Tuesday. I've never had any PAP machine before and not sure what to expect. I've got Sleepyhead software already installed, but read it doesn't work with the new machines. How do people track their therapy with these newer machines?