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+--- Thread: Is it hard to change DME? (/Thread-Is-it-hard-to-change-DME)
RE: Is it hard to change DME? - Sleeprider - 11-30-2018
Well done, especially taking the time to suss things out and arrive at what works best for you. The lower PS seems to have helped, especially with CA events. Keeping settings here for a while will let things stabilize as you move closer to final optimization.
RE: Is it hard to change DME? - Gideon - 11-30-2018
(11-30-2018, 12:11 AM)BeepBeepNoSleep Wrote: More importantly, I think I had a couple break throughs last night. First after reading about PS I had an epiphany. I feel like a bozo for admitting this but for whatever reason, I was fundamentally misunderstanding how bipap works. I was thinking that the EPAP part actually reversed the flow of air (suction instead of blowing). I was equating exhale pressure to it supporting MY exhale thinking it was some kind of magic suction. Understanding how it actually works helped me to better link the settings to what I was experiencing during use.Your intuition is closer than you may think. Back in 1980 a patient had so much obstruction his Doctor recommended a tracheotomy. He and his family refused. The doctor had modified a vacuum cleaner to blow and control the pressure. The patient agreed to try. The Dr. very manually increased pressure and Eureka, the obstruction went away, Not good enough he lowered the pressure, and the obstruction returned. Several more cycles to prove that this was not a fluke. The man woke up alert and refreshed and actually went home with the vacuum cleaner with the first CPAP.
So all this was designed around a machine that was designed to suck.
Fred
RE: Is it hard to change DME? - BeepBeepNoSleep - 11-30-2018
(11-30-2018, 10:55 AM)bonjour Wrote:(11-30-2018, 12:11 AM)BeepBeepNoSleep Wrote: More importantly, I think I had a couple break throughs last night. First after reading about PS I had an epiphany. I feel like a bozo for admitting this but for whatever reason, I was fundamentally misunderstanding how bipap works. I was thinking that the EPAP part actually reversed the flow of air (suction instead of blowing). I was equating exhale pressure to it supporting MY exhale thinking it was some kind of magic suction. Understanding how it actually works helped me to better link the settings to what I was experiencing during use.Your intuition is closer than you may think. Back in 1980 a patient had so much obstruction his Doctor recommended a tracheotomy. He and his family refused. The doctor had modified a vacuum cleaner to blow and control the pressure. The patient agreed to try. The Dr. very manually increased pressure and Eureka, the obstruction went away, Not good enough he lowered the pressure, and the obstruction returned. Several more cycles to prove that this was not a fluke. The man woke up alert and refreshed and actually went home with the vacuum cleaner with the first CPAP.
So all this was designed around a machine that was designed to suck.
Fred
Wow that is really cool. Maybe I am too cynical, but I feel like none of the doctors these days would even care enough to try something like that. Would be too concerned with the liability.
Another update. Called insurance and verified I am not renting machine. Called old DME and told them I am no longer their customer and to delete me. It happened to be same person that told me to just "suck it up" earlier this week. Their whole attitude changed.
Maybe I'm petty, but it was the most satisfying conversation I've had with these people. (and hopefully the last)Second night of treatment went good too. I just want to say thank you again to everybody that has helped and for taking to the time to put the treasure trove of information on this site. My outlook on treatment has done a complete 180. Somebody commented to me this morning that I had been early to work two days in a row so I "must be sick". This is good stuff.
RE: Is it hard to change DME? - SarcasticDave94 - 11-30-2018
I bet you were thrilled to tell these circus clowns at that DME to take a hike!
RE: Is it hard to change DME? - Fats Drywaller - 11-30-2018
(11-30-2018, 12:13 PM)BeepBeepNoSleep Wrote: My outlook on treatment has done a complete 180. Somebody commented to me this morning that I had been early to work two days in a row so I "must be sick". This is good stuff.
Great! Another success story. Glad to hear it.
That was pretty much my reaction, too, when my own therapy began to show results. There is a lot to be said for no longer being exhausted all day every day.
RE: Is it hard to change DME? - BeepBeepNoSleep - 12-04-2018
So I finally got a copy of all my records including sleep study from Dr. office, and wow! So much information. Wish I had gotten this sooner. There is a lot information in here that I had no idea about. It's extremely alarming how unconcerned and how shallow the explanations from the medical staff have been given the information they had. I feel like the doctor dictated it because he had to and nobody has read it since.
I have concerns about central apnea and whether I need to push for an ASV. And if I can get what I need done done before my deductible resets. I will say I feel like a bone head for putting all this off. It is very alarming how uncaring every party except this site has been. Even if I end up biting the bullet and paying extra for it, I want to do what's best for my health! (who doesn't lol)
I have been rolling along for 6 days with an average AHI of 3.23. The doctor mentioned anything below 5 is fine. I think I "feel" fine. I am definitely less sleepy during the day although there has been a little afternoon drowsiness a few days.
From the 2 night study in a sleep lab:
My 1st night study shows 46 apneas over a monitoring period of 431 with 45 central apneas, 0 mixed, and 1 obstructive. It also noted 93 episodes of hypopnea over the same period
My 2nd night study with mask shows 65 apneas over period 415 with 65 central apneas,0 mixed, and 0 obstructive. There were also 37 episodes of hypopnea over the same period.
The diagnosis was check marked for OSA, but central was left unmarked. I don't understand that.
Is there any information from the study that I can share that might help determine if I need an ASV. Or if there's something else I can do to make sure I am getting the best treatment?
Thanks!
RE: Is it hard to change DME? - BeepBeepNoSleep - 12-04-2018
I forgot to add. I asked the CRNPs about seeing ENT to possibly get some kind of surgery to help with sleep apnea. They said it might be worth checking into and would refer me if I wanted them too. Wouldn't central apneas be completely unaffected by this, however? And if so shouldn't they know and be able to explain that?
RE: Is it hard to change DME? - Gideon - 12-04-2018
I would post a copy of your Sleep Study(s) just so they are a part of your record.
Some people have their Central events disappear within the first 8 weeks (or less), you appear to be one of those.
Unless something changes I don't think you will need an ASV and that is awesome.
Fred
RE: Is it hard to change DME? - Sleeprider - 12-04-2018
Your sleep study confirms what we suspected, however your results are now falling within acceptable parameters due to the forum suggestions on settings. Unfortunately, if you want to promote to ASV, you need to go back to your prescribed settings to demonstrate the need. Damn, we're good here, but sometimes it keeps you from the higher level of therapy that might be better.
RE: Is it hard to change DME? - BeepBeepNoSleep - 12-04-2018
(12-04-2018, 09:07 PM)Sleeprider Wrote: Your sleep study confirms what we suspected, however your results are now falling within acceptable parameters due to the forum suggestions on settings. Unfortunately, if you want to promote to ASV, you need to go back to your prescribed settings to demonstrate the need. Damn, we're good here, but sometimes it keeps you from the higher level of therapy that might be better.
That's what I figured. Ironically, I can't tolerate the prescribed settings enough to generate enough data to prove I can't tolerate the prescribed settings. The CRNP's solution to improve my AHI and help with compliance was to increase my pressure. Either she didn't actually read my history or she has no idea what she's doing. I can't shake the feeling that these people have no idea what they are doing.
At this point I will keep gathering data. As long as the bipap is mostly working and I'm feeling okay, I will just stick with that. If not, at least I'll have a bunch of data to try and get them to take interest or more likely to help whoever my new Dr. is.