Question from the back of the class

There are 2 intentional vent places...at the nose piece and at the top where the short hose assembly goes into the silicone hole...on that little clear elbow are the other vent holes....these are what we call intentional leak/vent rate holes ...so that excess carbon dioxide gets blown off and a person isn't rebreathing their own breath which contains carbon dioxide.
So that's "normal leaking" and not necessarily excess leak. The ResMed machines subtract a normal/generic normal/vent rate prior to reporting the leak numbers...with this mask I think that the machine needs to subtract a larger number because I think the vent rate is higher than the generic number...didn't think it was this high though.

That's why I was asking about hose...and make sure that the hose at the top of the head where the mask attaches to the short hose...that little circle thing...make sure it is correctly seated.

Ruling out any other possible culprits for the high baseline leak numbers...or trying to.

Still gotta look for my own DreamWear reports...will take a while..it's been months.

Well...crap...I have way to many posts to sort through...and I might as well save time and do a 15 minute test with my DreamWear... It'll take me an hour to find it and then go back into SH and zoom in...might as well do my own test now.
Will be a little bit...gotta go dig it out from my box of masks.
Will report back shortly.

Well, double crap....for some reason I don't have any detailed graphs for my testing...shows up in ResScan but not SleepyHead and you need apples to apples for comparing.
I will try again in a little while.

I did find this old thread from last fall when I was using the DreamWear.

viewtopic.php?f=1&t=108724&p=1036669&hi ... t#p1036669

Double click a couple of times on the image in that thread to enlarge it so you can see the leak graph better....at the beginning of the night...no leaks and the baseline was pretty much at 0.0...so this is where yours should be. My pressure used was similar to yours. Later in the night where you see the really big large leak times...I am pretty sure that was mask straps in the back sliding up and causing the mask to dislodge as I remember waking up and having to pull it down a couple of times but for the bulk of that big leak time...I slept right through it.

There's something going on in your situation that is elevating the baseline leak or starting point for calculations and with it this way you are going to have some large leaks get reported that aren't really large leaks...can't explain away all of your large leaks though...some are way too big to blame it on the baseline.

Grace~~~ wrote:Hello wonderful CPAPtalkers~~~

I feel nervous about increasing the pressures again. It still seems wrong somehow to take control? I don't know why?

If you don't follow the guidelines attained in a sleep study regarding minimizing the AHIs, and the ODI score {blood oxygen level drop}, you could easily worsen your situation.

FWIW...until the leaks are better managed I don't know that increasing the pressure is needed.
Actually...what I thought about suggesting was a tight apap range to limit the chance that the pressure changes are making the leaks worse (harder to anticipate a good seal).

Did you ever have a sleep study with mask and machine to help figure out pressure needs? I forget.
I thought you were given the apap in a wide open range and told that the machine would sort it out. Which isn't entirely true...big surprise there.

Can you make sure that the little white plastic thing on the short hose fits snuggly into the long hose?
I know with mine it was a bit loose and would tend to slip out a bit ...sometimes all the way out and that's a big leak that wakes you up but a loose connection might account for some of the leak we are seeing.

Pugsy wrote:FWIW...until the leaks are better managed I don't know that increasing the pressure is needed.
Actually...what I thought about suggesting was a tight apap range to limit the chance that the pressure changes are making the leaks worse (harder to anticipate a good seal).

Did you ever have a sleep study with mask and machine to help figure out pressure needs? I forget.
I thought you were given the apap in a wide open range and told that the machine would sort it out. Which isn't entirely true...big surprise there.

Can you make sure that the little white plastic thing on the short hose fits snuggly into the long hose?
I know with mine it was a bit loose and would tend to slip out a bit ...sometimes all the way out and that's a big leak that wakes you up but a loose connection might account for some of the leak we are seeing.

WOW ... yes! I have had a few episodes of my hose falling out. I was irritated that it came loose so easily.

I don't have a short hose. Just the one hose but it is currently nice and snug. Obviously it wasn't snug the times it fell out.

Your memory is awesome in that I did NOT have a sleep study with masks. In fact, I was diagnosed during a hospital stay because I had such problems recovering from anesthesia after several very VERY long surgeries. I do not have a 'sleep doctor'. I live in Florida but was diagnosed with apnea in NYC. (Manhattan was a different stratosphere compared to Florida. Those yankees saved my life. Bless their hearts!) So there are lots of issues and I have not found anyone helpful. I realize it is not my Florida surgical oncologist's primary concern. I sometimes have a feeling they (Blue Cross) figure I will die anyway so why treat the apnea? But maybe they treat everything 'sleep' with such careless disdain?

My cousin thinks I should maybe see a neurologist who would perhaps make a better 'sleep doctor'.
Though I don't know that I have a neurological problem? So the neurologist is plan B and cpaptalk is my current Plan A.

All I knew was that I was extremely anemic and exhausted after so many rounds of chemo and radiation and then it was determined "maybe cpap would help". One nurse mentioned that sometimes your throat is even damaged by intubation and long hours under anesthesia.

...and it's all still a blur.


However, it is a better blur than focusing on my next CA125 (*cancer antigen).
I suppose I should pray and be thankful for this kinder, gentler cpap issue.

Be thankful for my leaks and obstructions ~~~
and thankful for ALL progress.

I am.

avi123 wrote:

Grace~~~ wrote:Hello wonderful CPAPtalkers~~~

I feel nervous about increasing the pressures again. It still seems wrong somehow to take control? I don't know why?

If you don't follow the guidelines attained in a sleep study regarding minimizing the AHIs, and the ODI score {blood oxygen level drop}, you could easily worsen your situation.

This makes a lot of sense, AVI.

It is crazy that they did not do a titration study but just gave me an APAP and said it would serve the same purpose as a sleep lab study. The APAP would figure it out.

This is why I am somewhat angry.
A lot of things don't make sense to me.

Take a bit of tape of some sort and wrap it around that white plastic end of the mask/hose/frame thing that goes into the long hose...so that it is just a little snugger....maybe air is escaping from that junction...loose hose but not so loose it falls completely out. Doesn't have to be horribly tight...just so that it won't slide out so easily. Won't take much tape...couple of wraps probably...depends on how thick the tape. I don't want you to try to tape the 2 pieces together though. Might create problems later when wanting to change masks.

Given your history....we don't know much about your OSA (if you even have it) and with the chemo and all that other stuff going on....I would suggest concentrating on just getting some sleep and not obsess over the leaks at this time. More time for adjusting to things and do what little you can right now to limit the leaks (like the tape on the end).....You have to get the sleep first...and even if you have bad leaks for half the night that you slept...you didn't the other half. It's far from perfect but it certainly better than nothing.

I am going to see if I can come up with a nasal pillow mask for you to try....either one like mine or the one I used to use..the Swift FX. I have some nasal pillows that are new and unused but I don't know if I have enough of the other parts to make a complete mask.
It won't matter if the headgear and frame is used...just matters if the nasal pillows are new and I have plenty of spare unused Swift FX nasal pillows....and I have a couple of spare P10 nasal pillows.
I would really like for you to try one of those masks...They are so light that I don't think that you will miss the hose over the head attachment thing.

Let me see what I can find....I just threw away a P10 frame because it got really yucky so I am now using my last spare frame....but I do have the headgear saved. If I can find a frame I can build you a complete mask.
If I can come up with a complete package you can try it...if you hate it just send it back to me...if you love it consider it a gift and keep it. I don't want you to go buying something that you may not like just because I would like to see you use something that is a little more stable. My main complaint with the DreamWear was that I found it more unstable than my other masks.

Give me a little bit to see what I can come up with and check my stash of supplies to see for sure what I have or don't have. I will let you know tomorrow or the next day. Right now I am beat and I have a bad toothache....and the dentist can't see me until next Monday.

Given your problems getting good solid hours of sleep with the mask on....even if you saw a sleep doc and they wanted to do a real titration sleep study...you still need to be able to get decent sleep to get decent results...he would likely suggest continue to try to adjust so you can sleep so that he could get good data...one hour of sleep at a titration study won't help find the right pressures....been there and done that myself on my titration study. Couldn't sleep...finally got a little over 2 hours and they didn't get my pressures right...ran out of time.

Oh...I forget if anyone asked or if you ever said...but what meds are you taking now?
Are you still doing the chemo thing or on hiatus while we wait to see if the CA returns?

awwweeee PUGSY! That is so sweet. That is really too much!

At least let me pay the shipping. I do have a little financial issue now since I haven't worked in several years but I am still managing with savings and past investments without any help.

I am not on chemo now.
I hope to never be again though they will not remove this port from my chest for a few more years.

The only medicine I am on is prescription iron.

I am not sure if I mentioned, but they rebuilt a completely new ureter out of my intestines and re-positioned my bladder and kidneys. I have a big scan next month to see if that is working.

I won't gross everyone out with the details.

It is amazing what they did. They did not attach to my old ureter but built a completely new one. However, there is no 'check valve' and so it can back up in to my kidney and cause me to get sick really fast if I am not careful. That is one reason why I am up often all night.

Depending on this next scan ....????
well, anything could happen

I can't plan very far ahead

...but I have some hair again.
...and I have some projects.

You're right though ... SLEEP ....WOULD ... be good.
Happy ... no fear sleep ...

Not sure if it's possible
... but really I just want to "fear no evil, and KNOW He is with me"
awake AND asleep

Good Night.

Thank you for this very interesting day!
June 1st, 2016.

feels like a milestone.

{quote="Grace~~~"]awwweeee PUGSY! That is so sweet. That is really too much!

At least let me pay the shipping. I do have a little financial issue now since I haven't worked in several years but I am still managing with savings and past investments without any help.

I am not on chemo now.
I hope to never be again though they will not remove this port from my chest for a few more years.

The only medicine I am on is prescription iron.

I am not sure if I mentioned, but they rebuilt a completely new ureter out of my intestines and re-positioned my bladder and kidneys. I have a big scan next month to see if that is working.

I won't gross everyone out with the details.

It is amazing what they did. They did not attach to my old ureter but built a completely new one. However, there is no 'check valve' and so it can back up in to my kidney and cause me to get sick really fast if I am not careful. That is one reason why I am up often all night.

Depending on this next scan ....????
well, anything could happen

I can't plan very far ahead

...but I have some hair again.
...and I have some projects.

You're right though ... SLEEP ....WOULD ... be good.
Happy ... no fear sleep ...

Not sure if it's possible
... but really I just want to "fear no evil, and KNOW He is with me"
awake AND asleep

Good Night.

Thank you for this very interesting day!
June 1st, 2016.

feels like a milestone.[/quote]

No, they will not remove the INFUSION PORT that they implanted under the skin in your chest EVER. It will stay with you the rest of your life.

avi123 wrote:No, they will not remove the INFUSION PORT that they implanted under the skin in your chest EVER. It will stay with you the rest of your life.

In NY they take the ports out as soon as your chemo is done. Down here they leave them in for a few years to keep the infusion center in business doing port flushes. It seems the medical industry creates a lot more busy work for itself without a high population density to keep it busy doing real stuff. NC is even more backwater so I don't doubt they'd leave them in for life. But I'm sure you can get it taken out anywhere if you know how to ask.

Grace... you are my new hero

And, I know you will get all this sleep apnea/sleepyhead stuff because 1) you are very bright, and 2) you have Pugsy guiding you.

I wish you continued good health!