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New Member - Hello! [how long before considering adjustments?]
RE: New Member - Hello! [how long before considering adjustments?]
Just to continue tracking progress - I am now two nights off APAP, and I feel slightly better. I remain tired and foggy, and feel generally like I felt prior to treatment, which isn't good, but isn't as acutely bad as has been of late.

I have an echo scheduled tomorrow morning with my cardiologist, and my results discussion with him Monday next week. No calls from doctors regarding bloodwork, so assuming that wasn't too bad. The results I see posted on my portal show most items within the normal posted range, with a few exceptions. Any hemotologist specialists on here care to opine on these few outliers? Everything else appears to be within the posted ranges.

Protein measurement (Total protein)
8.4 g/dL (6.4 - 8.2)

MPV
11.7 fL 7.4 - 10.4

Monocyte, percent (MO %)
9.1% 4 - 6
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RE: New Member - Hello! [how long before considering adjustments?]
Congrats on progressing towards heart echo test. It's pretty easy as far as these things go. Mine was done at the hospital imaging dept. Shouldn't need any prep for this. The tech will have you lie on the exam table with shirt off or open. They will then use a wand with this COLD gel on it and your chest. Then the tech moves the wand around the left chest area getting heart images and sounds. You might be lying flat then slightly tilted to the left side. Wipe you off and done.

Afterwards the cardiologist will interpret results. You should get a copy of this, and if you'd like post a redacted one here. The important item is called LVEF as a percentage. Thumbs up towards an ASV if you score over 45%. Mine was 55% FWIW. Best to ya.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New Member - Hello! [how long before considering adjustments?]
I am still kicking. I still don't have a prognosis for all of the symptoms, nor have I gotten any kind of sleep study progress. Either my doctor or insurance is slow rolling this.

My doctors focus currently is on peripheral medical issues yet to be determined - but it seems highly correlated with sleep, possibly cardiac in nature, even with a clean echo - loop recorder picked up some minor abnormalities in my rythms, and am doing another holter monitor to confirm whether my implant is flagging everything appropriately.

So maybe some heart stuff going on. Thankfully, the echo looked structurally good and I was very safely beyond the LVEF threshhold. (70%).
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RE: New Member - Hello! [how long before considering adjustments?]
Still kicking is great news. LVEF seems a non-issue, not with that number. Maybe call the slow rollers to get this going. Keep us informed and best to ya.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New Member - Hello! [how long before considering adjustments?]
Another quick update - my sleep study request was denied, and doubly denied after the peer to peer with my doctor.

"The authorization was denied as the customer already has an obstructive sleep apnea diagnosis. The test ordered by the provider is a split night in-lab study. A peer to peer review was done with the customer’s doctor today. The CareFentrix Medical Director advised that since customer has a history of sleep apnea already and cardiac diagnosis a repeat study to diagnosis him again is not needed. CareFentrix advised the doctor that an in-lab re-titration study would be approved if requested. At this time we are now waiting on the provider to submit a request to CareFentrix for this test."

I have been without any pap treatment for more than a month. And I owe that all to insurance slow rolling my authorization, against my doctors orders.

I am waiting on my heart results, as the test was....pre-certification denied. Thankfully my cardiologist got that one approved with the peer to peer.

I am still hanging in there, but suffering, and struggling daily. One of these days I hope to get some sleep direction.

One of these days, I hope to live in a country where healthcare decisions are made based on patient need, and not based on some third party company's "medical" staff that has never met me, seen my chart, observed my experiences, or understood my full health picture. Somehow the whole "do no harm" creed seems to have been lost.
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RE: New Member - Hello! [how long before considering adjustments?]
How is your SpO2 holding out at night. The problem is that you are apparently misdiagnosed with obstructive apnea, but have treatment emergent central apnea that does not respond to CPAP. Your doctor should not have ordered a diagnostic test, but a titration test to evaluate bilevel and ASV. This is entirely on him.

You should record SpO2. It is inexpensive, and you can identify if you have a serious health complication as a result of your poor PAP treatment. I would argue your doctor is not your best advocate.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New Member - Hello! [how long before considering adjustments?]
Sorry to hear that. That Dr. Duck isn't doing you any favors. Hope you find a way to give someone a swift kick to get your medical need taken care of.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New Member - Hello! [how long before considering adjustments?]
Happy to report that I am scheduled for a titration study tomorrow night! It took weeks of painful back and forth, insurance denials, peer to peer calls with physicians, but it got done.

Any suggestions going into the test for how to approach with lab techs? I planned to explain my history when I arrive, indicating what I have seen with my own data using OSCAR. Are there any other suggested keywords or targets to aim for with the titration study?

Thanks all! I am praying for some relief.
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RE: New Member - Hello! [how long before considering adjustments?]
(10-29-2019, 11:43 AM)skiajl6297 Wrote: Happy to report that I am scheduled for a titration study tomorrow night!  It took weeks of painful back and forth, insurance denials, peer to peer calls with physicians, but it got done.  

Any suggestions going into the test for how to approach with lab techs?  I planned to explain my history when I arrive, indicating what I have seen with my own data using OSCAR.  Are there any other suggested keywords or targets to aim for with the titration study?

Thanks all!  I am praying for some relief.

I would like to see the list of issues you want to discuss.  I recall seeing frequent leaks, an irregular and rapid respiration rate, Occasional central apnea, potential limb movement, flow limitation and arousals.   Your diagnosis is UARS, so it seems the objective should be to look at what appears to be an abnormally low tidal volume, high respiration rate and to evaluate if CPAP or bilevel with pressure support can improve the upper airway resistance to normalize volume and respiration rate.  You posted a previous home sleep study that shows you are normal, healthy weight (165 at 6'-2"). No data appears to have been collected in that study evaluating respiration.  The study documents arousals, snorng but concluded no indication of OSA. 

Obviously, that study missed the reason you need therapy and feel unrested.  I think it is desirable to conduct the study in a way that documents your sleep using PAP therapy to see if there is a treatment emergent condition that needs a change in the therapy approach.  What do you think should be added to that?
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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RE: New Member - Hello! [how long before considering adjustments?]
I planned to explain to the technician that while using APAP, which was given to me for my UARS/OSA, my health steadily declined.  Most importantly, over the four months on APAP, my AHI increased, machine reported central apneas and hypopneas increased to become the majority of my apneas every night, even with obstructions resolved at relatively low pressures, my breathing at night was irregular and rapid, I routinely felt like I was fighting for more air and experienced flow limitation, my overall health declined, I developed insomnia, felt less rested on awakening than before treatment, more fatigued at work than before treatment, shorter temper, more night time arousals and awakenings, more frequent nocturia, heart palpatations, waking up gasping for air with my heart racing, unintended weight loss, and ultimately a ton of missed work because of these symptoms.  My life went from normal working functioning adult, to borderline disabled. 

I have had a full cardiac workup (nuclear stress test and echo, implanted cardiac monitor, all clear), full blood workups (including metabolic panel, all clear), am undergoing genetic testing, and the only concrete issue we have identified is that my sleep was made worse by being on PAP.  I have been off PAP almost for a full month, and am feeling marginally better, but am still barely able to function at normal levels.  The cardiologist and my primary care physician both agree that we need to address sleep issues, as they are clearly causing at least most of my symptoms.

I have a cardiac history of AF, as well as an underlying cardiomyopathy, and am on blood thinners for the rest of my life.  Any outcome with PAP that does not correct my disordered sleeping will likely result in worsening cardiac symptoms and more decline in my quality of life.  As a thin, active, full time working, 38 year old father of two young boys, I need to get to the bottom of this.
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