Ok, I'm new, but I've got a lot of ?'s

[John S]

Hi everyone, I got the link from my sleep center and have been reading through the site for a few days. I have a few questions that I have not found suitable answers to ( I'm sure they are there and I just did not find them) and sure could use some help. But first, a bit about me.
I have suffered from Atrial Fibrillation for about 5 years now. I've had 6 cardio-versions which have put me into normal rhythm for anywhere from two weeks to 18 months with the shorter durations being the latest. I've now been in AFIB for about a year and my Cardiologist ordered a sleep study which it appears that I failed miserably.
I received my CPAP last week and have been trying to use it every night but have run into a couple of stumbling blocks, well one actually and this is the one I think I need the most help with.
My problem seems to stem from mask fitment. During the sleep study I initially used a nasal mask but they said my jaw relaxes too much and it was ineffective so I went to a full mask. The one they gave me was a medium sized respironics with the gel. When I got the machine I was given a different mask and was told to use it. I did, for a night or two but it was extremely uncomfortable and leaked profusely so I switched myself back to the gel mask. The gel mask seems to work better for me but the bridge of my nose is taking a beating. It's been red and sore and has gotten very sensitive to touch. I think this may be due in part to the fact that I need to use the machine set to 19 (it goes to 20) and with the higher pressure I do not get a seal unless I really tighten down the mask. Is there any advice concerning this?

An additional question concerns the heated humidifier, I have noticed that sometimes more water is used than others. Does ambient air play a role in how much water is used during the night?

And lastly, the machine I have uses a RAMP function which is currently set to 30 minutes. I'd like to change that and if I post the machine model information can someone explain to me how to do this?

Sorry for the long first post.
John

[JohnBFisher]

... Hi everyone, I got the link from my sleep center and have been reading through the site for a few days. I have a few questions that I have not found suitable answers to ( I'm sure they are there and I just did not find them) and sure could use some help. ...

Well, greetings! Doing your homework ahead of time will definitely help you get some high quality responses. Well done.

... My problem seems to stem from mask fitment. During the sleep study I initially used a nasal mask but they said my jaw relaxes too much and it was ineffective so I went to a full mask. The one they gave me was a medium sized respironics with the gel. When I got the machine I was given a different mask and was told to use it. I did, for a night or two but it was extremely uncomfortable and leaked profusely so I switched myself back to the gel mask. The gel mask seems to work better for me but the bridge of my nose is taking a beating. It's been red and sore and has gotten very sensitive to touch. I think this may be due in part to the fact that I need to use the machine set to 19 (it goes to 20) and with the higher pressure I do not get a seal unless I really tighten down the mask. Is there any advice concerning this?
...

Ah! The problem of the mask fitting. You will find that it takes time to learn to deal with this. There is a balance between too loose and too tight. And it can be hard to find just the right point.

To address the bridge of the nose issue, I would use a bandaid for a while until my nose adjusted to the mask. No doubt others will have many other ideas. I think you will find some articles in the Wiki of the board. See the light bulb at the top of the page (labled CPAP Wiki). No doubt others will have additional suggestions for you.

... An additional question concerns the heated humidifier, I have noticed that sometimes more water is used than others. Does ambient air play a role in how much water is used during the night? ...

Yup. Humid days use less than dryer days. Outside air temperature also impacts the evaporation rate.

... And lastly, the machine I have uses a RAMP function which is currently set to 30 minutes. I'd like to change that and if I post the machine model information can someone explain to me how to do this? ...

Sure. Change the equipment list on your profile. Click on the "User Control Panel" hyper link near the top left (under the Search box). Then on the second tab you will find the second line where you can edit your equipment list. Use the text version so everyone can see at a glance what you have.

... Sorry for the long first post. ...

No need to apologize. Welcome! Hopefully you will find this will help you regain a sense of well being. It can sometimes be a difficult fight to reclaim it. But the help you will find here can be amazingly helpful. Glad your sleep clininic provided the link. It really does help.

[timbalionguy]

Keep in mind as you work with your mask, etc. that 19 is really high pressure. You will undoubtedly need to work harder at mask fitting, finding the right mask, and adjusting it properly to keep leaks down at that pressure.

I would also recommend considering the Hybrid mask. Mine seems to work well at higher pressures (13-18 right now).

[Julie]

As far as the humidifier goes, if you have a very leaky mouth or mask - full face or not - the humidifier uses more water to compensate, so that also could be a factor.

[scrapper]

Also for your nose, lips, other tender skin..........Lansinoh works great!

Some of the guys (LinkC) like to call it "nipple grease"..........it's really for nursing mom's to toughen up breast tissue. It works great for "cpap skin" also.

You find it in any drug store/WalMart/Target etc in the baby aisles by diapers, formula, etc.......

[John S]

Thanks for the replies. I've populated my equipment list as suggested and now I've got another question.
The CPAP has a SD card inserted into it. What does this do and I see a lot of mention of "the software you are using" but I have no clue as to what this is. I am assuming from what I have read is that use information gets stored onto the memory card and someone (probably the MD) looks at this information and makes changes or suggestions. Am I correct in that these cards can be read with the right software and if so how can a user benefit from this information?

Also, back to my original post, knowing what equipment that I have how can I get in and change the ramp setting?
Thanks, now I am off to search C Flex and find out what it is all about.

[Julie]

The software goes into your computer, the card into a (specific) card reader, which attaches to your computer, and you can read and/or print out all the data of various kinds every day to see your state of state, therefore hardly ever needing to see the MD's who usually are interested only in "compliance" data, which keeps the insce. co's happy, but tells you nothing about your progress (or lack of it). Go to the lightbulb on top of the forum pg. and get reading - lots of info. there, plus everyone here will help you interpret the data.

[cflame1]

Based on what you're saying about a SD... you've got the wrong machine in your profile. It also doesn't match your humidifer and based on what you're saying about the SD card, I'd guess that your humidifier is right.

[John S]

Based on what you're saying about a SD... you've got the wrong machine in your profile. It also doesn't match your humidifer and based on what you're saying about the SD card, I'd guess that your humidifier is right.

You're right about the machine. I have the REMstar Pro C-Flex+ but it is not listed in the drop down menu. My mistake

[cflame1]

Check under PR System One... it's there.

[John S]

Thank You! I guess the PR stands for Phillips Respironics. I'll get used to all this eventually.

[Hawthorne]

If you have the PR System one, there is no patient software YET-( they are promising it) so your DME or doctor will have to read the data from your SD card. You could ask them for copies. It would be worth asking for copies, since you could see, at home how things are going and people here on the forum may be able to help with intepretting the data.

We are hoping that the software will be available for patient's home use, sometime next year but nothing is definite yet.

I hope they do come out with patient software for that machine, and soon, because it seems to give excellent therapy according to those who have. It would be great to have the software to get the data right at home, as with the Respironics M Series, some older Respironics machines and other brands of machines.