[CPAP] Beyond ASV with Overlap Syndrome!

[SarcasticDave94]

OK I just had the "visit" over the phone with my new pulmonary doctor. I do not know how long he will be employed by me. It's not only as long as he agrees with me but more whether he can help or make things worse. When I assess his helpfulness or lack of it, then I'll know enough to decide.

He states that the other pulmonary office misdiagnosed a probable case of asthma as COPD for the entire 4 years! AND that I may not have apnea at a level worth treating?!?!?!? Dave says I doubt that! I mentioned the 2016 PSG that recorded 124 CA and 24 OA. He said it was probably wrong. Dunno.

New Duck is ordering an at home sleep study to generate a baseline, and I'm in full agreement with doing so only to resolve the issue, move forward, and get the right treatment. Doc didn't know I have 2 ASVs at home until I mentioned his colleague prescribed a NEW ASV, and I stated I'll return the newer unit as I cannot use it at all.

I asked about my PVCs and the affect on oxygen levels and that I'm monitoring my pulse and oxygen via a pulse oximeter. I mentioned I feel oxygen deprived sometimes and that the meter shows and records some level of this. His response is the feeling I've got is purely an artifact from seeing data.

One positive point for doc/patient relationship. He is willing to investigate and get a new baseline for apnea. I'd think with all the other PSGs and titrations already it should show a trend we can rely on to a certain level of confidence. No guess not. I agreed to this home test as I NEED answers to this. He and I will have a very interesting conversation afterwards. I may be very bullheaded, but I am open to professional opinions if backed by reliable data, so that's why I OK'd the home PSG. This PSG should give doc confidence in the results maybe. Either way he's on a short leash as I've no qualms about switching docs and pulmonary offices immediately after we discuss the test results which I will demand a full copy of course. In fact, I'm contacting Medicare CS to see about other pulmonary offices now. Then I have already got the next doc's office in mind if or when it's needed.

The negatives are he doesn't have confidence in my gained knowledge as in when I stated I saw PSG results that I knew what I was talking about. So it seems possible this working relationship may be doomed to being short-lived but we'll see.

PA and East coast no explosions...yet.

PS late edit 1/8/21 Jablin isn't getting the chance to get boat payments, I've killed off his wish to do any home study. It'd be inconclusive and a waste of my effort and the insurance's money.

[SarcasticDave94]

Small update for any interested: I had a conversation with this new Dr. P. Jablin and the results seem positive and negative. I'm choosing not to be a negative person, but my real feel Spidey senses on this consult is a negative, a probably dead end. SO, proactive self advocate Dave checks with Medicare Customer Service and found via the automated call system that I do not have in-network physician lists per se. This led me to call 3 other pulmonary offices to get yet another take. One is UPMC in Gettysburg, PA one is a pulmonary office that seems small and located in Carlisle, PA, and Penn State Pulmonary located in Lemoyne, PA.

Within 30 minutes of ending the call with Dr. Jablin these things took place:
Call to Medicare.
The little office in Carlisle I filled a contact request.
UPMC Gettysburg talked with pulmonary office reception and was transferred to leave message on sleep medicine's office voicemail.
Penn State Lemoyne wanted PCP file, so I went to PCP 30 min away and filled a release form and ran back over mountain.

APPARENTLY Dave isn't satisfied with Dr. Jablin's assessment that I don't have COPD nor that I do not have sleep apnea.

Have a very safe and warm evening and day Wednesday due to the pending snowstorm predicted. I think Ducktor Jablin just drove me through a snowjob!

And I believe very much this is how I'd advocate others take the bull by the horns and get proper and respectable treatment. WellSpan Chambersburg, PA has already struck out with Dave.

BOOM!

[Sleeprider]

It sounds stressful to me. The uncertainty of trying to pursue appropriate treatment with the history you have, only to be told all your past diagnoses, tests, data and personal experience and knowledge are probably wrong is an amazing outcome for a first "virtual" appointment. Dr Jabba seems to head far up an unlit corridor. I hope the next door your open has some more light.

[SarcasticDave94]

Yep pretty much SR and thanks for hanging with me on this mess! My RT at Lincare did call me this eve. after normal hours. She discussed the return of the ASV and what needed to be returned. I just gained a new PAP carry case and SD. She can't accept these and has orders if they come back to toss 'em in the trash. No not the ASV itself. ASV and power cordset goes back and the RT scheduled team members to get the ASV from me at the house possibly next week. Billing ceases tomorrow AKA next biz day from Dave saying I'm returning this product statement. So stated.

The RT gave me 3 other contacts within the medical field, a WellSpan RT, an Internal Medicine doc, and a Pulmonary doc that it was suggested I call. Homework for tomorrow so assigned.

RT stated to me we just need a script from doc to get NIV and her statement is I do have COPD and apnea despite joker saying contrary. She's still leaning hard to a Philips NIV of Trilogy or Trilogy Evo, but I'll still attempt hard to get Astral. RT states that NIV normal package includes accessory heated hose kit and humidifier. I can still use the Vitera mask if I prefer, they will setup NIV with single limb leak circuit, AKA identical to what a PAP circuit is like.

Long day at the office at DWB and associates!

[Sleeprider]

It seems to me the insurance and DME are all onboard. You need a doc that is curious enough to TRY something new that few have done before, and observe the data and patient feedback before shooting off his mouth and forming an opinion. In other words, what do you have to lose?

[SarcasticDave94]

Oh BTW this RT said even my PCP can script it, but anyone in the medical supposedly can script me an NIV if they're willing. So take note folks, as Sleeprider has stated lots of times, pulmonary doc or sleep medicine doc isn't needed to script the PAP or an NIV ventilator just any doc or PA-C or some nurse practitioners it seems.

[Sleeprider]

Dave, I think your pursuit of specialists may be misguided to the extent, these guys have pretty big egos, and each has their own approach to diagnosis and treatment. They really aren't interested in having you decide how they should treat you. They aren't necessarily specialists in positive air pressure therapy at the level you're interested. I really think you have a better shot at convincing a more generalist physician based on your ASV experience and knowledge of where you want to take that. You are looking for a partner in your health tp optimize how you feel, not another specialty diagnostic.

[SarcasticDave94]

I do understand and agree. I do know my PCP isn't interested in getting involved with pulmonary, and I think but I do not know if he'd be unwilling to script a NIV. He's quick to be handing off pulmonary medication control, etc. to the pulmonary doc, this is how I made that assessment. I can certainly find out though. I'll schedule an appointment to ask that specifically. Is that what would be in your mind to do an action like that?

Oh BTW when I was attempting to schedule a different consult with someone my RT suggested, I was asked why I needed a consult. I stated I'd had a phone call consult with an unnamed WellSpan pulmonary doctor yesterday to discuss ASV failure and needing NIV according to an RT. I did say not his name but his dismissal of my test data was described by me as him being a Quack.

I am not attempting to be prideful but it seems I know more than some of these ducks about my care needs. I do have to process so as to get insurance to pay it. No way I can buy it myself.

[Sleeprider]

Keep in mind, you already have a NIV. This one just works differently by allowing you to set the pace and volume rather than rely on an auto algorithm.

[SarcasticDave94]

Internal medicine, would that fit what you're attempting to tell me Sleeprider?

Or to make it easiest, what kind of doc should I seek? You name the title and I'll find one. I've been attempting to get this done for 1.5 years. I need to change tactics I'd say.