back from the doctor's appt returned the bipap

[elena88]

Well, I took the bipap back..
they downloaded the information (which I could not grrrr) and said it was great...

I was so freaked (not good at appts) I forgot to ask for a copy of that titration report..

but she said, leaks were good, ahi ran from 0.8 to 4.5

and my pressure was 8....

Geez, that bipap was easy to breath with..

so.. what to do next.. cant really afford to buy a vpap right now, but plan to get the script for later..

Cant figure out why I feel like crap in the morning on xpap, and feel so good when I dont use it, so was going to order a new sleep study for me, split night.. I just had a sleep study in march but since I only slept an hour, she said I could do it again..

cant afford that either.... so next was sign up for oximetry report.. so they got the order ready, but all of them
were checked out... thats okay....

Im going to buy one instead, it will be cheaper.. she suggested to tighten the apap up as close to eight as I could..
eight to ten.. but I cant handle starting at eight, so seven to ten it will be.

If my oximeter shows I need a tad bit of oxygen, she will order that for me..

So, back on the old s nine autoset tonight, with a tighter pressure.. it was seven to thirteen.. tonite seven to ten..
maybe I will try to shut the epr off, but Im a wuss, we all know that.. however.. no matter what..

I plan to sleep like a baby, positive thinking!!!!!
Im going to figure this out if it kills me

[Janknitz]

Did you feel that bad in the morning on BiPap too???


You should keep your eyese peeled on craigslist and the auction sites to see if a BiPap shows up. You never know, and if you can get one that's affordable it might be totally worth it. You did sound much more comfortable on it, and your numbers were better than I think you have reported in the past.

[elena88]

well, after a few days of getting used to it, it got better, then I started to really like it..

I had a good morning today on it..

I was looking at that resmed S 8 25 vpap on cpap.com

sigh...some day!

[sleepymama]

u'll do it one day elena. glad you had a good experience. maybe you can call the office or go back in to ask them to make a copy of the titration for you.

[jdm2857]

Unlike the S8s, the S9 has a ramp feature in AutoSet mode. So, you could set your min to 8, max to 10, and use the ramp starting at 7 set for as long as it takes you to get to sleep (or a bit longer). With the machine set that way it won't go back down to 7 while you are asleep and may provide better therapy. If you get up during the night, just use the ramp again.

[elena88]

u'll do it one day elena. glad you had a good experience. maybe you can call the office or go back in to ask them to make a copy of the titration for you.

gee, thanks, I know its coming. I will ask the office to make a copy of the titration, thanks.

Unlike the S8s, the S9 has a ramp feature in AutoSet mode. So, you could set your min to 8, max to 10, and use the ramp starting at 7 set for as long as it takes you to get to sleep (or a bit longer). With the machine set that way it won't go back down to 7 while you are asleep and may provide better therapy. If you get up during the night, just use the ramp again.

You know, that is fine idea. I used to abuse my ramp feature, and keep the machine on four all the time, but I think I can
use it again without pressing it like a lab rat all night long.

Thanks.. I will try the ramp, the tight pressure, use the epr, and then try it without it another few nights.. There are so many variables
to dial in, its like trying to forecast the weather for a picnic

[echo]

Well silly don't turn the EPR off, that's as close as you're going to get to the bipap. What were the settings you had again? Try to duplicate that on the apap as much as you can. Eg 8cm with EPR of 3 might just get you by for a while.

Sorry for your loss

[elena88]

Well silly don't turn the EPR off, that's as close as you're going to get to the bipap. What were the settings you had again? Try to duplicate that on the apap as much as you can. Eg 8cm with EPR of 3 might just get you by for a while.

Sorry for your loss

Thank you echo...

Okay, I kept my epr on three..

I was very excited to fix all the settings last night.. I put the range from 7.0 to 10.6 epr on three, and ramp 45 starting at five..
AND i cant get my ramp to work... It says its set, but when I turn the machine on, it just goes right to seven. I checked it again, three times,
says its set for forty five minutes to start at five, and it doesnt work, what am I doing wrong?
Anyway, I lay there with it pushing air into me, and it is just so unpleasant.. the bipap was easier, but I can handle this... its okay.. but its
hard to go to sleep with my chest being ballooned up like that, but I did.. ahi was 1.7 all centrals.
I was so looking forward to waking up okay this morning, but it was a disaster. Felt that same rotten feeling in my chest, like a pin ball game
went on in my lungs.. I was so disappointed. I feel like I have tried so hard, and Im just a failure..

[Rogue Uvula]

ahi was 1.7 all centrals.
I was so looking forward to waking up okay this morning, but it was a disaster. Felt that same rotten feeling in my chest, like a pin ball game went on in my lungs.. I was so disappointed.

Do you have ResScan running for this machine? If so, what was the duration of the centrals (the number above teh line on the event graph). Not having many events is a good thing, but if the events you have are very long, you could still end up having some real oxygen deprivation.
The second question is how much total sleep did you get?

[Slinky]

I'm so sorry you had to return the bi-level after doing so well on it! That hardly seems fair or kosher. Maybe you'll end up "failing" w/this APAP and will have to be scripted a bi-level and insurance will pay for it. Hey! Stranger things have happened and hope springs eternal.

I know it has been a LONG HAUL for me. Starting w/a CPAP, then an APAP, then eventually to a bi-level auto, every change an improvement, but never enough. "Failed" in-lab titrations (didn't sleep enough), etc. Then working "our" way up the bi-level auto pressures .... and before success - severe aerophagia. Bad enough I actually HAD to go off PAP entirely for several weeks. Then back to square one at my lowest titration pressures and working up gradually. Every 1 cm pressure change brought back 2-3 days of aerophagia, nausea and bloating, then gradual improvement. FINALLY just these past 4 nights, IPAP 15, EPAP 11 and the first 3 mornings nausea altho less each morning and this morning only some burping, not even the queasies!!!! AND an AHI averaging 4.0 w/no Leak. Last night my lowest at 2.8 AHI, my highest AHI being 4.8.

So - Oct 06 to at least Aug 10 and developing Atrial Fibrillation in the process. Of course, a good share of the problem w/both finding THE right pressure and developing the A Fib was my COPD. And I can't go w/o shouldering some of the blame for being so patient w/the sleep doctors and not pushing them more often and harder. But I should NOT have HAD to push them. THEY should have been TRYING to help ME! That's what we are paying them for.

I know it can be hard. But don't be bashful. Keep pushing. And pushing some more. And PUSH UNTIL you are successful in getting good, restful sleep. Good luck and God bless.

[elena88]

elena88 wrote:
ahi was 1.7 all centrals.
I was so looking forward to waking up okay this morning, but it was a disaster. Felt that same rotten feeling in my chest, like a pin ball game went on in my lungs.. I was so disappointed.

Do you have ResScan running for this machine? If so, what was the duration of the centrals (the number above teh line on the event graph). Not having many events is a good thing, but if the events you have are very long, you could still end up having some real oxygen deprivation.
The second question is how much total sleep did you get?

hi there, thanks for your reply..

Yes, there were hardly any centrals at all, nothing to write home about.. only 13 centrals running from 10 - 15 seconds..
I logged in eight hours.. still dont know why I could not get the ramp to work..

I'm so sorry you had to return the bi-level after doing so well on it! That hardly seems fair or kosher. Maybe you'll end up "failing" w/this APAP and will have to be scripted a bi-level and insurance will pay for it. Hey! Stranger things have happened and hope springs eternal.
Well, the doctor wanted to give me a bipap, but then I told her I bought this machine already, and she looked very sad about that.. I will get
a prescrition for one, and try to get one some day. My insurance will never pay for anything until I meet my deductable, and that is not going
to happen unless something catostrophic happens. I know it has been a LONG HAUL for me. Starting w/a CPAP, then an APAP, then eventually to a bi-level auto, every change an improvement, but never enough. "Failed" in-lab titrations (didn't sleep enough), etc. Then working "our" way up the bi-level auto pressures .... and before success - severe aerophagia. Bad enough I actually HAD to go off PAP entirely for several weeks. Then back to square one at my lowest titration pressures and working up gradually. Every 1 cm pressure change brought back 2-3 days of aerophagia, nausea and bloating, then gradual improvement. FINALLY just these past 4 nights, IPAP 15, EPAP 11 and the first 3 mornings nausea altho less each morning and this morning only some burping, not even the queasies!!!! AND an AHI averaging 4.0 w/no Leak. Last night my lowest at 2.8 AHI, my highest AHI being 4.8.
Gosh you have been though the ringer havent you? That is a lot to have to endure just to get your treatment to work.

So - Oct 06 to at least Aug 10 and developing Atrial Fibrillation in the process. Of course, a good share of the problem w/both finding THE right pressure and developing the A Fib was my COPD. And I can't go w/o shouldering some of the blame for being so patient w/the sleep doctors and not pushing them more often and harder. But I should NOT have HAD to push them. THEY should have been TRYING to help ME! That's what we are paying them for.
I have had an irregular heartbeat upon awakening for fifteen years, but they could never catch it.. Now, I dont have that, or the nocturia, so
at least that is good news. I applaud you for keeping at them, it takes a lot of energy and determination.

I know it can be hard. But don't be bashful. Keep pushing. And pushing some more. And PUSH UNTIL you are successful in getting good, restful sleep. Good luck and God bless.

Thank you for your kind and inspiration words. I have been trying to gather information to make this work, my doctor will do ANYTHING I want to do.
She would have given me another sleep study, give me oxyemetry test, give me a bipap.. or oxygen, so she is very good. Our hands are a bit tied due to the
expense of all those tests, and the ones I have had not being covered until our deductable is met. We did meet it last year, but this year, no.. so Im
trying to learn as much as I can to see if I can figure it out without all those tests... and I dont know if they would do any good anyway..
I didnt sleep thru the last oximetry over night study, and didnt really sleep in my sleep study.. so it would probably be just more wasted time
and money with same results.. Sometimes I wonder if I really do have sleep apnea, sometimes I think its all been a big mistake.

[allen476]

Hi,

I kind of know what you are going through. Insurance company has yet to approve my bi-pap even though I have 3 letters from 2 different doctors and the RT from the DME stating the medical necessity of it. They even called me to find out if I am doing better on it. I have until September 12th on my loaner and I really don't want to give it back. Been doing a lot better on bi-pap. No aching chest, blood pressure is normal when I get up in the morning, and I have more energy again.

So I do understand your frustration with not being able to keep your machine when you are doing better on it. I hope that you can find a way to get your machine.

Maybe sell your old machine on cpapauction.com and buy the one you need. I am thinking of doing that myself before the loaner has to be returned.

Allen

[Slinky]

Keep an eye out at cpapauction.com for a lightly used Resmed VPAP Auto or Resmed VPAP Auto 25. They are excellent bi-levels, fully data capable, of course.

[elena88]

Hi,

I kind of know what you are going through. Insurance company has yet to approve my bi-pap even though I have 3 letters from 2 different doctors and the RT from the DME stating the medical necessity of it. They even called me to find out if I am doing better on it. I have until September 12th on my loaner and I really don't want to give it back. Been doing a lot better on bi-pap. No aching chest, blood pressure is normal when I get up in the morning, and I have more energy again.

So I do understand your frustration with not being able to keep your machine when you are doing better on it. I hope that you can find a way to get your machine.

Maybe sell your old machine on cpapauction.com and buy the one you need. I am thinking of doing that myself before the loaner has to be returned.

Allen

Oh gee, Allen this sounds so familiar to me, and Im sorry you are having such a struggle. There is no doubt my insurance company would buy
me a bipap if our deductable was met, they pay for anything.. we have a ppo.. but, long way to go on the deductable..
so you dont have an aching chest, or high bp in the morning on the bipap? That is great.. that is my goal too.. .not to have the
"squirrels in the chest" feeling, and the very high bp when I wake up too. I hope you get the machine you need which is perfect for you, and I so
appreciate you explaining what you are going thru, it really helped me..

Keep an eye out at cpapauction.com for a lightly used Resmed VPAP Auto or Resmed VPAP Auto 25. They are excellent bi-levels, fully data capable, of course.

I shall do that, I would love to get a resmed vpap auto 25, thanks for that.. I will spend some time over there, I have nothing but time now..

[elena88]

Since I am pretty down right now, I wanted to post a photo that was just taken a couple days ago which I just received in my email..

this is my husband and grandaughter, he is sixty four, and she is seven..
He had a heart attack last year, due to genetics.. he is VERY active..
he has to be with so many grandchildren..

We have seven grandkids, I adore all of them..

Our daughter just happened to email me this one photo to me today, just when I needed something to smile about.. so I wanted to share it
with you guys.. who have been so wonderful.. thank you..