Doctor Response - As Many of You Predicted

[Sleeper396]

Today I had a follow-up Telemedicine call with my sleep doctor/pulmonologist.  I am at approximately 90 days of treatment and doing well. AHI's are generally below 2.5, with Central Apneas making up approximately 70% of all remaining events. I am feeling better overall, now seeking to maximize the benefits of treatment.  

The doctor's response is classic and further indication of why Oscar, and this forum, is so important.  I had sent the doctor summary information from Oscar and a concise letter with my thoughts, complete with color graphs from Oscar. I confirmed 2 days before (with his office) that he received my information and that he would read it before our meeting. Of course, he did not have it for my call and said he was not aware of it. I told him specifically what I thought of that oversight. During the call he found it (and skimmed it). I asked him if he was familiar with OSCAR. Not surprisingly, the answer was "no."

I stated that he is doing both himself and his patients a disservice by not looking into the OSCAR software. He said that you cannot always rely upon all these different algorithms, and that sometimes you can seek out too much data.  I said that it is outstanding software that is reading the specific data from my ResMed machine, and that he should look at it carefully. I also told him that my being proactive in learning about my condition, has helped me bring it under control. (He said that he would look into OSCAR). 

The call included my discussion of the potential of an ASV machine to treat my CA's. "Not needed, as it is under a 5 index," was the response, as many of you predicted.    

So, I left the call with a further commitment to be my own advocate, and a greater appreciation for what this forum does, along with the OSCAR software.

[factor]

He got off the call and noted to his staff.. "please makes sure to bill that guy." "Ok who is the next patient?"

[SarcasticDave94]

Not noted but you should have a whole truckload of symptoms and complaints not answered or treated acceptably thus far. If Dr. Dolittle didn't get an earful of all the symptoms, he can't act. He's possibly blind to OSCAR as well as CA. To doc: Yer fired!

[Geer1]

Just looked in your other threads and I noticed the number of times your machine shuts down. Sometimes it shuts off for a while which may be bathroom breaks etc but at other times it is for only a short period of time. If you are using smartstart it may be causing machine to shut off at times.

Your data shows a mixture of both obstructive and central events, both during sleep study without CPAP and also while on CPAP. It seems like you have always been using similar settings to your current ones, I am curious if you have ever tried EPR or higher pressures? To me your data shows an obstructive/restrictive nature that higher pressure or EPR could potentially help with. Both changes are normally counter productive with central apnea but more so with treatment induced central apnea, in your case central apnea was already present and may or may not get worse. If your central apneas isn't obviously worse at higher pressure/EPR then they could be advantageous. If trying higher EPR I would try it by increasing both EPR and min pressure so as to maintain min EPAP, if you only increase EPR then pressure then it lowers EPAP which could cause more apnea.

Anyways just an idea. Although ASV would be preferred for central apnea it is only necessary if increasing EPR makes central apnea worse.

[Sleeper396]

Thanks, Dave. I did give him a list of continuing symptoms, as well as my goals for improving my therapy -- i.e., further wakeup reductions, less bathroom trips per night, day after rested feeling, lower blood pressure, etc. He minimized those by saying I am doing great, and with a CA index of approx. 2, there should be no need for ASV. He felt that I may continue to improved with my current APAP.  So, I will battle this with the excellent guidance of the team on this apnea board, and will evaluate further over the next 30+ days based upon how I am feeling.

[Sleeper396]

Thank you, Geer, for taking the time to research my treatment threads. That was extremely thoughtful of you. 

The shutdown is usually me. I do use smart start, but I have not seen issues. I generally hit the button myself, multiple short times, to examine progress during the night, usually upon wakeups, both before and after bathroom trips. I need to stop doing that. I may disable smart start anyway. 

I will definitely experiment with higher pressure and EPR. (The sleep doctor even suggested testing higher pressure at the end of my call the other day, so your suggestion is right on point). Also, Sleeprider suggested a pressure increase a while back, and I was working it up slowly. However, now I have a good plan to test based upon the combination of your suggestions.

Again, thanks for your support.

[Sleeper396]

One further question on EPR.  If I am not experiencing any exhalation difficulties with higher APAP pressures, should I hold off EPR? Would I be better off moving the min pressure up from 8 to 9 (and perhaps 9.6) and wait to see if I need relief on exhalation, or do you think that I should try EPR immediately, and if so, what settings?  I am currently at 8.4 on minimum and 14 for max, with no EPR or ramp. Thanks.

[Sleeprider]

My thoughts on EPR are that you have a lot of arousals, and your 95% flow limitation is regularly over 0.1. Setting a slightly higher pressure (9.0) and slowly implementing EPR might produce interesting results. Not everyone has more CA events, although that is a common outcome. The other side of that coin is that if EPR elevates your CAI to the point where it gets the attention of your doctor, it might move you towards a therapy that addresses CA. Several years ago, it was fairly common for us to warn users with central apnea that optimization might reduce events to the point they would no longer qualify for ASV. Anyway, it is worth learning your response to EPR and making a decision based on both comfort and efficacy.

I assume the doctor this thread discusses is a sleep specialist. I would suggest requesting your primary doctor to manage your sleep disordered breathing health management. I have not personally ever seen a sleep specialist, although one did interpret my original sleep report in 2008. I really think this is an unnecessary specialty that is mostly self-serving to the doctors that repeatedly ignore input from their patients and just follow the insurance guidelines to minimize therapy costs. Think about it.

[NelsonM]

I vaguely understand why a sleep doctor may not know about OSCAR. What I don't understand is why they're not familiar with the similar software ResMed produces and markets to sleep doctors. ResScan, AirView, they provide data similar to what OSCAR does. And it's all "official" and "clinical" so they have no excuse to say they don't trust the algorithms, etc. The problem isn't the software. The problem is the medical system.

[Sleeper396]

Excellent points, Sleeprider.  I will take some time to digest your post and then develop a further plan for myself.  

I do agree about the sleep specialist and moving to someone who might have more of a vested interest in my overall health. I always assumed that you would get the best care from specialists, but sleep apnea/sleep specialists appear to be a breed among themselves. This is not the first experience that I have had with a pulmonologist/sleep doctor, and none have been positive. Were it not for this board and the care exhibited by the posters, I would probably have gotten lost in the uncaring medical system. Thanks!