[CPAP] Beyond ASV with Overlap Syndrome!

[Sleeprider]

Yes. That is my primary doctor. He manages my PAP therapy and coordinates other "specialty" consultations. I use specialists as needed, but it all comes back through Dr Richard H Rosenthal, an internal MD, North Versailes, PA.

[SarcasticDave94]

ok copy, I'll see what kind of progress I get

So far for me pulmonary sounds like poultry specifically ducks.

[SarcasticDave94]

Update 12/17/2020

I called my primary care office to make an appointment specifically to address this fight to get NIV. I saw the other doctor at my PCP office. Fine by me, I was seen today. Called at 9ish AM today and seen at 1130 AM today. I braved the elements to drag myself and antique auto over the little PA 16 mountain between Mercersburg and McConnellsburg, slogging it out in the snow, slush, and cold.

First the nurse and then doc and I discussed in some detail that I have COPD, Complex Apnea, PVCs. I briefly mentioned I left the healthcare of Pulmonary Consultants, self referred to Pulmonary WellSpan Chambersburg, PA to get medical care for said COPD, Complex Apnea, and the connected ASV and medications. PCP doc mentioned a Dr. Jablin as one at the WellSpan Chambersburg that has fairly good reviews. Coincidentally Doc that's the doc that called me, first time ever consult, and states I don't have COPD, any sleep apnea, or proper training to read a sleep study or titration result and state what I read was accurate, that I will make my oxygen level drop due to artifacts of looking at the percentage number on my pulse oximeter.

I asked doc for a Christmas present in the form of a script for NIV and accessories. He could not due to some medical practice rules within Tri-State Healthcare management. Second place prize was issued. I asked for referral to Penn State Pulmonary Lemoyne, PA and to UPMC Pulmonary Hanover, PA. I could buy the NIV myself if I had the money, but I do not. So onward to tilt at NIV and Pulmonary Quack windmills. I will keep fighting. AND I will win!

Great day all.

PS I called the DME to pass on the events of being referred to new offices and to schedule a driver pick-up of the ASV and power cordset.

[SarcasticDave94]

I do experience the reluctance to get NIV the RT mentioned with regular docs here, docs in my area are too slow to push for patient needs, so I go the way I do because even a new PCP probably will not script the AVAPS moded machine.....and this isn't even mentioning the quack.

I have some progress in that I was in contact with whatever her title was at UPMC pulmonary and sleep. Seems she's like an RT. We discussed my treatment needs of both COPD and Complex Apnea, and the implosion of my ASV therapy. She sees what I mean; this was a phone call. It went a lot better than the quack not too long ago. Even so, I'll bide my time a bit longer as end of year holidays approach. I'll visit the doc via video meeting of some sort. RT-ish girl thinks that sometimes there's even sleep study or titrations for NIV using AVAPS. Doc video chat 1/11/21...
But I've got my name in at Penn State Pulmonary.

Now if I get my way it'll be ResMed's take on it being iVAPS. I felt if I believe strongly enough to endure more possible tests and switching from duck to Quack and so on, I'm pushing for a ResMed, this meaning the Astral and the Lincare RT only mentioned Astral 150 and her preference to the Philips Trilogy and newer Trilogy Evo.

I feel I may even suggest I'll help her set my machine up when they finally get it figured out.

[Sleeprider]

[SarcasticDave94]

Close at that. I feel a bit cobbled together. This'll be new AB territory it seems. Let's see the titration/sleep study Dave that shows this and that on AVAPS. Oh and I have forgotten I think to state that the nurse in quacks office said her version of funny 2 weeks ago I think but definitely before the quack called...your pulmonary need may be too complex to get AHI of 5 or less on therapy, you may need to accept 10 or 20 AHI and consider that well enough. Ma'am do you realize AHI 5 is treated not 10 or 20. Well that may be the best we can do. No because I will not accept untreated numbers as treated Ma'am Have a nice day.

[Sleeprider]

Don't fall for the Medicare trap of using the numbers as a surrogate for efficacy. If you feel the best you can, the therapy is working. The question becomes what is my potential? It's a bit elusive but is less based on numbers than the functional aspects of what your therapy enables you to do.

[SarcasticDave94]

Yep I'm pretty sure of what you're saying Sleeprider. As is, my ASV therapy for 2.5 years or so, from the just after starting phase and getting things tuned and optimized for me, that time again about 2.5 years the results were always below 5 AHI on the SH or OSCAR reports. I intentionally leave out machine stats because I would rather gauge it by 1 point of data than addition of confusion of 2 or more inputs of data. I am not stating one or any other is more or less accurate, but just limiting input to one data source is far better to track stats and such. And I say the same to others as what I do on that. Stick with OSCAR data and there's no point to be confused about.

Now again the stat of AHI was 5 or less, but the feel/feedback/complaint/symptom side was good for that same 2.5 or so years. My take is numbers say I'm treated, feel agrees because I felt better. I did not need AHI 0 and actually felt better at AHI 2-3 but not 0 or 5. BTW my study, I'm sure it was a titration, earlier this year reported 0 events on therapy. But there's within the report of 58% sleep efficiency. Number indicate something, feel indicates change is necessary. Arousals were 146 or so that study too. Newest study gives the new low pressure setup at AHI 7. I don't remember other outstanding stats. I did sleep well, but then again I took an Ambien. I'd rather not pop Ambien to sleep well but if it's a must so be it. At home, I now can either have higher or lower pressure setup and have AHI indicate well treated at 0 or definitely below 5 AHI, but I am awakened at 1-3 hours after therapy start, taking mask off from bad feelings of not being in sync breathing and that the lungs are full, similar to breathing deep and holding it in and not being able to exhale. I have tried restarting therapy and it's not going to work. I feel extremely uncomfortable with it at that point and it is not painful but a high discomfort just short of pain if that makes sense.

Now that the wheels have fallen off and refuse to be reinstalled, there is a regression to pretreatment days. I have headaches and insomnia again, odd random sleep times where either too short or too long sleep sessions are akin to the past before ASV. And sleeping long or short sessions is not tied to when I go to bed even though the times for going to bed vary too. I just cannot fall asleep if I go to bed and not ready to sleep. To myself, I have defined the strong requirement to replace ASV this way, based on feel not number, if I had to choose one only of with or without ASV, I select without, because it's less disruptive. I cannot allow 1-3 hours using the ASV and then wakening and feeling discomfort for the remainder of the night. I wake up unrested either way, but it's actually better with no ASV time than with. This is my reality. I decided not to continue ASV use for the reason that the feel side is greatly worse for using not just a bit different or whatever, but a lot worse with ASV. Now given the opportunity to replace ASV with a machine that works with the intention to wear the mask all night and all night therapy, and be treated, and eliminate the awakening and discomfort, I then choose to fight for getting the machine necessary.

[SarcasticDave94]

Well, I had a 15 or so minute video chat with new pulmonary Dr. Viramgama of UPMC. He listened to my explanation of what I've been dealing with, from CPAP to BPAP to ASV, and with historical evidence all have failed. He did not say looking at data makes things worse, nor did he say I do not have COPD or apnea. Also of note is he did not disagree with any of the assessment, just that he wants to create test results so we can proceed.

I intentionally portrayed history as things I recall and were explained to me by doctors, nurses, and RT's that NIV with AVAPS mode is necessary due to my complex apnea/COPD status and that ASV treatment is no longer working, especially after pneumonia and bronchitis 2019. But he did comment that I knew very well what I was talking about and that he appreciates patients that know what they are dealing with and how to get answers.

I need a new PFT/pulmonary function test and walking oximeter test, and he's then passing on request to Lincare Hanover to provide an NIV of the choice between myself and the RT. I will be taking the combo test in Gettysburg on 1/26.

It's not over but the feeling of the state of affairs is that persistence pays off.

[Sleeprider]

Dave, have you ever read the Things to Consider section of the Resmed Titration Protocol?  Particularly the last line applies to you.

Things to consider

• ASV rapidly stabilizes breathing because it responds to:
  - Central apneas – stabilizing ventilation   
  - Obstructive events – stabilizing the upper airway
  
• ASV’s algorithm is not cleared or appropriate for the following patients:  
  - Chronic and profound hypoventilation  
  - Moderate to severe COPD  
  - Restrictive thoracic or neuromuscular disease
  
• ASV will likely under treat patients with the above conditions, and you should consider moving to iVAPS