Hi everyone

[dduttonnc]

New to the boards. I've made a few posts already. I may have stepped on a few toes. My apologies. I try to debate as polite and courteous as possible and admit when I'm wrong or if I was an jerk

Is it customary for my to post an intro about my condition, why I have all this equipment, etc ?

If so, I'll do so. Got a APAP s9 autoset on 5/22/2014 which was quickly swapped out the other day to what I have now. The autoset data plus a 2nd sleep study revealed a deadly case of central sleep apnea. It actually hits me during the day a few times a year. I want to breath but the muscles and everything don't respond. Usually resolves in 10-45s. It can be manually fixed if someone blows air into my lungs.

I probably had this my whole life. But it's gotten bad in the past 5 yrs and HORRIFIC in the last year. So I'm also seeing a cardiologist and neurologist to find out what's up


That's the SHORT version. If anyone is curious to the long , I'll be happy to post

Due to my computer engineering background I've already reset all my settings so my ahi, total Ai, and central are less than 1.... Sometimes as high as 2.

The settings the dr ordered had my numbers at 10-20 each. Plus the mask, tube etc was wrong. Epr off. Climate control auto vs manual.

Anything that can b set to "patient". Is set to that so I can quickly change those. Otherwise the unit is now in a Full vs limited mode

The one Machine I did not and WILL not mess with is the o2 concentrator. Too much o2 can DMG brain and body as we need nitrogen and other stuff. To little , and it won't help my CSA, and can cause brain DMG during CSA events.

[dduttonnc]

Amy reason why I could not edit my post above but now the option to edit it are gone? On the last edit.. It said I didn't have permission. I can edit this post. But if I try to delete It I get a permission error

[justMongo]

Welcome to the forum. I'm not sure you can delete a post that is the start of a thread. And there is a threashold of x posts before certain operations are allowed. The forum uses this to reduce drive-by SPAM posters.

How many LPM of O2 are you inducing into your xPAP flow?
The RESMED machines can operate with up to 5 LPM without it upsetting their sensor mecanisms.

[dduttonnc]

Only 1.5 LMP right now to start.. the machine can do 10.. but that's 5 over the s9s max.. dunno why they got me that one.... maybe for future resmed devices that can handle more?

and I have a SpO2 sensor on my finger (I have to tape it each night or it falls) off that records my SpO2 all night long and has a micro SD card in it which I just drop in the mail and mail it to my DR every week ( in theory.. hasn't been a full week yet)... I can look at the display and see my min/max SpO2 for the night...

Now that I tweaked my s9 and got my AHI , AI, and Central down to 0.x -2 in the past few days.. my min SPO2 has gone up from 81 to 91.. that's still a bit low so he will probably increase the O2

My sleep apnea got so bad, I starting entering a form of false CHF.. basically at night my heart couldn't handle the load and my lungs fill will fluid and it's already cause a 1mm thickening of my left ventricular wall (cardio doc says thats nothing to worry about as long I correct the apnea, lost 50lbs and keep it off).

Once all the CHF symptons go away in the next few weeks, the O2 will probably be lowered to 0.5 LMP or 1LMP

It was my cardiac issues that actually let me to a sleep Dr.... I was having REALLY erratic beats during the day.. I'd pass out.. my BP would be 240/160 at times and 90/60 at others.. id gain 40lbs in water weight in a week. then id take lasix and in 2 days I'd drop it...

the cardio Dr couldn't figure out what was going on as I exhibited moderate to advanced CHF and other cardiac issues, but all the tests showed my heart fine... I don't even have arterial occlusions (which is fantastic for my age)... then he asked what kind of watch i was wearing.. I said it's not a watch.. It's a FitBit Flex.. it monitors my setps.. track my food, activities and calories to help lose weight and also monitors my sleep.... then he pause and said, can you pull up your sleep data right now? I said sure.. I have an app on my iphone... every night it showed me restless 400-600Xs and awake 50Xs... I had an emergency appt with a sleep Dr the next day.. I had an emergency sleep study at home that night (all the centers were already full), and I had a resmed s9 autoset EPR 2 days later... it helped... but the Central numbers were OFF the chart and I stilll had all the bizzzare cardiac issues....

So I was sent for a FULL sleep study where they found out that sometimes my brain doesn't tell my body to breath.. and doesn't react , in any way to low blood oxygen.. and other times I breath VERY shalllow and my blood o2 drops... my brain does nothing to correct it...

2 days later I had the new res med in my profile... the o2 system came a day later.. My insurance covered EVERYTHING except the s9 itself which I had to pay 3200 for. but the ins co gave me 775 to help with it... I'm appealing the decision and have a neurologist, cardiologist, and a sleep dr saying I NEED this or I could die without it.. So I'm pretty sure I'll win and get paid back...

But I have more tests... neurological to see why my brain is doing this... and once the vpap has been on me for a month, if my cardiac symptoms have not vanished.. then ill wear a holter monitor and have more tests (cuz that would mean what's left is not sleep related)

[Buckeyedog]

Wow, that's crazy man. Mine is central apnea as well but certainly not on the level that you have it. Just wanted to say best of luck to you.

[trish6hundred]

Hi vdduttonnc,
WELCOME! to the forum.!
Sounds like you have a lot going on.
Hang in there for more responses to your posts and best of luck to you with your CPAP therapy.

[justMongo]

A sleep doc once told me that some people with longterm, untreated OSA lose their central ventilator drive.
It may improve with treatment.

Interesting story of how you got an initial diagnosis.