Thread by @marygerdt

I am Bewildered by both cumulative sleep deprivation and the Resistance of DME Providers to Even Try to make the claim for a Replacement of this Terribly Designed CPAP Nightmare Scenario. Millions of Sleep Deprived Sufferers of #OSA stop breathing at night.
It’s Bad. Way bad 😱

https://twitter.com/aasmorg/status/1406388260146909185

My Dentist 🦷 assessed my TMJ clicking. I woke up in the night,ripped out my bite guard and started chewing my thumb. He asked if I was on CPAP. Why, yes, I said, but Phillips recalled and I can’t get a new one. He said I deoxygenated and wake up biting. Dental reflects Mental 😫

Coincidentally, I’m using @ouraring to monitor sleep and activity, HRV,HR, and more. Off CPAP sleeping way below needs. But of course, Patient information is anecdotal, Or Not?? Using @Apollo_Neuro device is designed by Neuroscientists. Have Yours yet @dagenmcdowell ?

By increasing my Heart Rate Variability, using other alternative modes @GavinGiovannoni @Brandon_Beaber @sennasthunder @Gadolinium_MRI I believe finally propped me up so I could Face the Ultimate DME Medicare Fight 🥊

I’ve worked Over 35 years in Nursing. Like Dear Friend @missmary24 a Fierce Patient Advocate, Learned to be Clever Communicators in the Mine Field of Medical Case Management, Advocacy, Coordination and Drying the Tears of People in Pain and Suffering.
Self Advocacy? Impossible 😢

I am Certain, @Apollo_Neuro raised my HRV in conjunction with taking advice from @ouraring when to take it easy, rest or good day to do something! I also believe my HRV ⬆️ helped me hold it together after multiple calls to @MedicareGov Blue Cross of VT , the Reluctant Provider.

No, I never registered the machine with Phillips.
I threw it away.
After 13 months Medicare paying, I owned
it. It was Poorly designed, Unfixable. They have no replacement. They offer some dubious filter for truly 24/7 dependent patients but patients can’t find.

Thus began my long journey using every bit of knowledge of how it all works. Re-Researching guidelines. Re-Scouring my scarred brain for the proper wording… replacement-not before 5 years Except if machine broken. Well, is Unusable, Broken? Yup

I was advised to talk to my Doctor. I did. Thought I could manage without…that was my sleep deprived brain talking. How many millions of people are like me, but don’t have the energy to spend 2 days on phone 📱 trying to get a replacement?? @RepSpanberger @MarkWarner @timkaine

I actually feel bad for the Providers. Sleep lab found out last week and I’ve known for a month thanks to Twitterverse. No notice from Phillips. No plan. I kept getting referred back to Phillips. Why?? Walmart does exchanges in 2 days. Word on the street? No fix in sight.

In the end of my story, I got my new @ResMed machine started up and ran like a Dream last night. My Phillips Never Worked that well!
I propose @MedicareGov put all its weight into stopping Phillips from prolonging this misery. Assessment of Patients off therapy needed Now.

Medicare, Medicaid, VA and Other Insurance Providers Must be Clear to Members that Replacement With Resmed is the Only Solution and Money needs to go towards helping Resmed with Manufacturing challenges. Providers need guidance on priorities and path to getting people back on Tx.

I hope you believe, like I do, that hyper focus on #Covid is losing sight of other healthcare challenges, Like
Life Threatening Obstructive Sleep Apnea , affecting millions. Fin.
@threadreaderapp #unroll please 🙏🏼😎

I want to be clear, Blue Cross of Vermont were the best advocates & gave me courage to keep going. The DME Provider failed me until Finally I got through to someone who could understand. I won’t name the Provider. They have been in the dark because It’s a mess. I 🙏🏼🙏🏼 for them.