Update from BamaGramma

[BamaGramma]

I'm not sure at what point in my disastrous CPAP journey I last posted. Last September I went to the sleep clinic, complained again about my difficulty using the machine, and the nurse practitioner ordered a pulse oxygen test that could be done at home. When it hadn't been scheduled 2 weeks later, I called and was told they'd get right on that. In November, the clinic called to cancel my upcoming appointment because I hadn't done the test. I explained it had never been scheduled, was told I should have called them, and explained that I did. They said they'd get right on that. When the test still had not been scheduled by the beginning of 2020 I decided to take matters into my own hands and change clinics.

On January 8 I saw the same doc who diagnosed my restless legs twenty years ago, told him my sad story, and he ordered another sleep study, which I had on January 14.

I had the follow-up yesterday and saw the PA since the doctor was out of town, and the PA went over all the results with me in great detail. That right there was a huge difference from the other clinic. They just gave me a number that indicated mild apnea and slapped me on a CPAP. No explanations. No opportunity to ask questions. Nothing. I was pretty much left to my own devices.

So, sadly, I still have mild apnea (I was hoping the 17 pounds I've lost since the first of July with Weight Watchers might have eliminated the apnea). But the biggest surprise was that when the PA looked at the info on the CPAP's SD card, he revealed that all this time the CPAP has not dealt with the apnea. NOT ONE SINGLE NIGHT. I saw it with my own eyes. Despite my struggles, despite me telling the other clinic that the quality of my sleep had diminished on the machine, they never did a solitary thing to help me. The nurse practitioner there chastised me and told me to "try harder."

THAT, my friends, should qualify as medical malpractice as well as Medicare fraud.

So, on February 4th I'm scheduled for another night in the sleep lab, this time with a CPAP/BiPAP titration. They'll figure out which machine and which mask is best for me.

Thank goodness! I FINALLY have a doctor who cares. The other clinic would take the SD card at each of my visits, but either they didn't bother to look at the data or they simply didn't care (and I'm leaning heavily toward the latter). Their online reviews are either 5 stars or 1 star, so there are a lot of dissatisfied folks like me. Popular opinion among the 1-star reviewers is that they are more concerned with money than their patients' well-being. I left a 1-star review as well, got a voice mail from the head doctor himself with his personal cell phone number, asking me to call him and discuss. I texted back that the time for discussion was long past and that if he wanted to talk to anyone, he should talk to his staff about their gross negligence.

I am sad I have wasted 6 months with Dr. Incompetent. But better days are ahead.

[prodigyplace]

Please keep at it. People are here who can help you on this journey.

If possible, please post some screenshots from OSCAR formatted as suggested in the pinned threads at the top of the forum page.
That will provide us with information on your machine settings and likely WHY it is not helping you.

[Pugsy]

viewtopic/t176693/BamaGrammas-Therapy-T ... tions.html

Her past history thread.

Her therapy was never really optimized...pressure settings not optimal.
Let's hope that the up coming in lab titration will do a better job. She also simply found the whole cpap thing not conducive to good sleep...maybe bilevel would work out better for her.

[Goofproof]

To insure good treatment, many times it requires you to learn and take charge of your own treatment.

Get and learn (Oscar), so you can see how you are doing day by day. You can post here Oscar data, people here can help you with the settings you need.

On the Pulse ox, you can buy your own recording pulse ox under $ 100 Less than fooling with medical failures. Jim

[kteague]

In view of your history of a restless legs diagnosis do tell your doctor in advance so that wiring and monitoring your legs can be a part of any upcoming studies, both without and with CPAP.

[BamaGramma]

In view of your history of a restless legs diagnosis do tell your doctor in advance so that wiring and monitoring your legs can be a part of any upcoming studies, both without and with CPAP.

They did wire my legs in the January 8th study and my legs were still as mice that night, which means the Mirapex is doing a good job.

[BamaGramma]

viewtopic/t176693/BamaGrammas-Therapy-T ... tions.html

Her past history thread.

Her therapy was never really optimized...pressure settings not optimal.
Let's hope that the up coming in lab titration will do a better job. She also simply found the whole cpap thing not conducive to good sleep...maybe bilevel would work out better for her.

The doctor seems to think bilevel might be the answer.

[Janknitz]

Nobody cares about your health as much as you do. That's why you must be an active participant in your treatment. Tools like sleepyhead and Oscar allow you to monitor your own therapy and let the doctor know when the treatment isn't effective.

[nee]

THAT, my friends, should qualify as medical malpractice as well as Medicare fraud.

I'm curious, did the new clinic you go to take Medicaid? While I like that everyone gets access to healthcare with Medicaid, the unfortunate reality is that low reimbursement rates lead to the sorts of experiences you had. Hope things get worked out!

[chunkyfrog]

The bad players need to be reported with whoever pays them.
Ask for and file the paperwork.
This is how things get fixed.

[kteague]

In view of your history of a restless legs diagnosis do tell your doctor in advance so that wiring and monitoring your legs can be a part of any upcoming studies, both without and with CPAP.

They did wire my legs in the January 8th study and my legs were still as mice that night, which means the Mirapex is doing a good job.

Glad to hear your experience with Mirapex is positive. I would still want every study to include a fresh look at the legs. Things can change. These meds are known to at times result in tolerance or augmentation. Just something to stay on top of.

[BamaGramma]

THAT, my friends, should qualify as medical malpractice as well as Medicare fraud.

I'm curious, did the new clinic you go to take Medicaid? While I like that everyone gets access to healthcare with Medicaid, the unfortunate reality is that low reimbursement rates lead to the sorts of experiences you had. Hope things get worked out!

I don't know about Medicaid. I'm a Medicare patient with a supplement and they didn't bat an eye. The first place was a private clinic and a private hospital sleep study clinic. My new place is at a public hospital.

[kteague]

I feel your frustration with wasting time on a doctor who wasn't helping you. I had a doc who was widely acclaimed (hmm, maybe that was was self acclaim in advertising lol) who let me suffer for 5 months. Found my way here and got things turned around right away. Granted, I was dealing with limb movements also, but the CPAP stuff he should have been able to be more helpful. Didn't help he sold me a machine with no useful data for guidance. My biggest issue was waking up every few minutes feeling like I was suffocating so as instructed I'd hit the button to start over and it would repeat all night. People here immediately picked up on if it was happening just minutes into my sleep time and I was restarting multiple times a night, my issues were probably during the ramp period. Sure enough my ramp was set to start at 4, and the ramp feature was pretty unintelligent back then. I was spending a large chunk of my night in ramp and never reaching the prescribed pressure. Once I increased my starting ramp pressure and shortened my ramp period, there was a marked improvement in seeing some effect from my treatment. I'd match the knowledge and experience of this place up against most sleep doctors any day, but there are good ones out there. I finally found a gem. Hope you now have.

[BamaGramma]

I had the titration study last night and will see the doctor in two weeks for results and a plan of action. But with regard to last night, they started me with the DreamWisp, which is what I've been using, but a S/M size rather than the L that the DME gave me. I did okay for a while but started mouth breathing, so they switched me to a DreamWear full face mask. That did okay for a bit but then I started having bad leakage. So they put a ResMed Mirage Quattro full face on me and while that controlled the apnea, the tech said they had to use such high pressure to do it they were unhappy with that. So back I went to the DreamWisp with a chin strap and that was my best performance last night. The tech said they have a limited mask selection in the lab, but they have more in the clinic itself so I may get to experiment more. I have no idea about pressure; I'll get that when I see the doc in two weeks. But even with all the mask changes I still slept better last night than I have in months.

Then today I had a root canal, but that's a different matter. All I can say is, thank goodness for nitrous oxide!

[BamaGramma]

Okey dokey, I saw the PA today for the titration results. I'm including one of the charts from the info they discussed with me.The first couple CPAP levels were with the nasal mask but no chin strap. The next 2-3 were with full face masks. They actually made my apnea push to the severe stage. Then at level 17 they put me on a BiPap and I began having central apnea, which he explained as a disconnect between the brain and the respiratory system. Not good!

So the treatment plan is this - best pressure looks to be 7 to 9, and they set my existing machine to that. I'm to use the DreamWisp with the smaller mask than originally suggested by the DME along with a chin strap. I'm to use the machine as much as I can tolerate and then return in 6 weeks for evaluation.

The saga continues. But I have SO much more confidence in this clinic and the doctor and his PA.

I also inquired about using a SomnaDent since my new dentist is almost board certified in this field. He offered to write me a script, but I just had to pay for a root canal so my budget is strained at the moment. I'll talk to the dentist when i see her next month.

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