New User uestion: Has anyone heard of....

[chearyshe]

Breas Vivo 30 BiPAP and a Weinmann Joyce SilkGel ff mask?
This is what I was given (without a choice) after months of letters, doctor's reports, phone calls, faxes, and a promissory note for lots of money.
That's the way it's done here for BiPAP machines, I think. The mask is going to get a lot of time to get used to but the upside is is that the pulmonary doc said I can spend a few hours at the Lung Dept of the hospital to get things set up right. Nice guy! That mask is a mask from hell, and with it I can't read in bed because of the nose bridge. ::SIGH::

This whole thing is going to take time to get used to but I'm determined to make a go of it. Last night (1st night), don't laugh....I slept for 1 whole hour....too much focusing on my breathing. I've gotta do something about that!
Breathe in/breathe out is a very normal action but when you focus on it it can be very ....very....asnnoying!

I'm very glad that this forum exists and you people know so much and can help me and other newbies!

Geula in Israel

[avi123]

Geula, could you please describe your sleep problems and where did you go for testing?

As I understand it, your health insurance should cover the cost of the machine, mask, and supply.

In what city do you live?

How come that you picked a nesher for your avatar? I am from Nesher.

I never heard of the Joice SlikGel mask but it looks OK to me:

http://www.weinmann.de/fileadmin/wm_de/ ... N_0212.pdf

Why are you using such an expensive BiPAP machine ($2,700 with the humidifier):

http://www.cpapplus.com/machines/bipap/ ... ivo40.html

[Sheriff Buford]

I feel that the mask is a personal 'thang and the doctor should prescribe a mask that fits the needs of the patient. Don't let a doctor or DME force a mask down your throat.

Sheriff

[Pugsy]

Welcome to the forum Geula.

We have another forum member here that is also in Israel (or was last I heard) Ozij memberlist.php?mode=viewprofile&u=1169

You might drop her a note and ask her input for what your options might be. I know that they do things differently in Israel (as well in other parts of the world) than here in the US. That model machine is not commonly dispensed here.
Our normal supplier comments about masks and trials and such may not be available where you are at.

Obviously there are other masks out there that will let you read in bed and not be the mask from hell but getting one of them may take some initiative on your part and the type of machine you show seems to be a very special machine and for very special problems and sometimes some masks don't work well. Not saying that is the case with your machine since I really don't know anything about it or why you were given a particular mask without any say so in the matter.

The mask is the hardest part to all this therapy and you need to be satisfied with it to have a good chance of success.
If Ozij doesn't drop by here in your thread...send her a note and I bet she will try to answer your questions and help.

[chearyshe]

Avi......I have a eagle as an avatar because I'm a eagle addict! I follow the eagles on a webcam at NCTC in W.Va.
I have moderate sleep apnea and a weird malady called tracheobronchomalacia. I found it very hard to exhale against the inflow of the air pressure.

There are plenty of CPAP machines available here...ResMed and Philips Respronics...or whatever the company is called. The BiPAP machines are so expensive here that the Sick Fund makes it a loaner, hence the price of a promisory note. With all the different kinds of CPAP machines on the market, I'm sure I could find one that suits my needs

I have ozij's e-mail address and will drop her a line after I try my machine for a few more nights.

I did seem odd to me that I had no say in the matter of machine and mask but hey....this is Israel and things are done differently, not always to the benefit of the patient!

Avi, I live on a Kibbutz near Hadera and had my sleep test at Hillel Yaffe. My pulmonary doc is at Meir.

I'm gonna sleep on the living room couch tonight so I can "watch tv". That always puts me to sleep!

Thanks for the imput, people!

Geula in Israel

[avi123]

Sheriff and Pugsy, Geula is in Israel. The time there is 7 hours ahead of N.Y. time. They don't have DMEs over there. But instead, they have better medical insurance than we have here. Every one is covered. But the question is if those insurances companies cover XPAPs. If they do I would not be surprised that XPAP manufacturers have EXCLUSIVE arrangement with the insurance company.

Pugsy, since you know about BiLevel machines I assume that you'll answer Geula questions when she comes back.

BTW, the meaning of the word "Geula" in Hebrew is "REDEMPTION" (i.e. that the Jews would return to Israel, the Holy Land). A nice name for a lady.

Added: Geula, why did you have to come up with such a strange problem?

From Wikipedia:

Tracheobronchomalacia or TBM is a condition characterized by flaccidity of the tracheal support cartilage which leads to tracheal collapse with condition extends further to the bronchi.

[chearyshe]

I came up with that strange condition because it's got a very impressive long name and people think it's great that I can even spell it! In addition to that, it is also a good excuse for avoiding long walks and excessive stair climbing.
I wish I could also blame my Chronic Brain Mush on TBM...but there's no chance of doing that.

[avi123]

Geula, posters here rely on data output from their machines either by looking at the machine's screen or by using software to download into a computer and then see it in graphs. Would you be able to do it there? People here adjusting the setting on their machines to see if they could optimize the settings more than the Sleep Test prescribed.

By any chance, do you know the pressures set-up on your BiPAP?

With regards to masks that are less confining, many here are using Pillows types of masks like these:

resmed-swift-fx:



But in my opinion, you need to use a chinstrap with it, especially if you are also a mouth breather.

I see that you have been posting in this forum since Dec. 2011 and even got a reply from our queen RG, see it here:

viewtopic/t77957/viewtopic.php?f=1&t=72 ... ow#p664924

[chearyshe]

I'm a mouth breather plus one of the recommended solutions for TBM is a ff mask (and BiPAP)

my settings are 6cm/10cm.....btw, I slept much better last night, a whole 3 hours and I'd say that the tv did the trick!
When I first put the mask on last night there were terrible face farts and I tried moving the mask this way and that, to no avail. In a fit of frustration I tightened the right strap even MORE and......it face farts stopped! I did try to concentrate less on what was going on with machine and mask and I guess it worked. Now all I need is someone to explain to me how BiPAP works, because I seem to be battling with "something"!
1-What are the normal BPM supposed to be...mine's set at 12 and I feel like I'm hyperventilating!
2-Does the machine sync with my breathing or do I sync with the machine?
CPAP was easy, just breathe and forget about the rest...this is complicated! lol

anyway, I have NO results of how I slept because it's a secret that can only be revealed at the sleep clinic. There is a place for a card but according to what the tech said.....it's of no concern to the patient! That's bullshit (pardon the language). I'll be taking my BiPAP with me to the Pulmonary specialist at the end of June and see what he has to say about it all!

Geula in Israel

[ozij]

Hi Geula,
When I started CPAP therapy, 7 years ago, I was given a trial of masks - until I found the right one, and they even switched me from one machine maker to another. I did have a fight on my hands, and changes didn't happen before I told them I will not continue before I see the doctor again - and the doctor switched me to another RT.

That said, I do get most of my supplies from the US, with the help of friends and relations, who have gotten used to bringing along my CPAP paraphernalia.

Getting used to therapy may take a while for some us - so don't be too concerned by the 3 hours on your second night -- they're actually an achievement!.

Face farts are a major annoyance with FFM's. A T shirt cut in the shape of a... toilet seat, to use one memorable description, will help with those.


As for insurance: I was given (or rented) trial machines by company reps I approached. my self pay for my APAP was higher than what it would have cost me to buy it in the US -- and that's when you have complimentary insurance. Company reps were helpful with software too - try to get their help, not the people from the sleep clinic.

Mush brain may be a result of lacking proper oxygen when you sleep; I've met some sleep professionals who I am sure have CMB (congenital mush brain) and are therefore not to be trusted. In other words: Do your best to get whatever info you can about your sleep study, your machine results, etc.

If your machine does have a slot for recording info, see if you can find a card to put in it -- the data recorded on it may turn out to be valuable.

Hose routing, and the type of pillow you use for your head may also make a major difference in leak management.

My best solution for a FFM was a Hybrid mask - bought in the US - I don't know if they sell it here.
And a reminder - please do not use my name on the forum, nor share it with anyone.
Good luck!
O.

[chearyshe]

Thanks for the advice, ozij. we'll continue our discussion in e-mails.

Cheary!

[Pugsy]

I am going to defer to Ozij on the mechanics of this particular machine because it is a bilevel and apparently being used as a type of ASV device since the reported 12 BPM. Other than basic information I am not real good with ASV understanding.

12 BPM is probably normal for a lot of people but for some it may seem rather fast especially at night when our respiration tends to slow down a lot.

When someone is actively under a physician's care using this type of machine other than basic explanations I will be the first to say ...talk to your doctor about any setting adjustments that might be needed to make using this machine go smoother. Due to the basic functions of how this type of machine helps us...yes it can be a challenge getting used to it from what I have read from a good many people. Forum member JohnBFisher knows about it and documents it clearly.

Should you happen to get your hands on a Respironics or ResMed machine then I can help with software so that you can see your own "ultra secret" data without being at the mercy of the sleep clinic people. I have no experience at all with the Breas machines and have no idea what is needed to be able to access the data on the machine. It is not a brand that is commonly used by forum members here so I have had no chance to get software issues sorted out.

[ozij]

http://www.breas.com/breas_templates/Page____772.aspx

Minimal and Maximal Inspiratory Time
New improved extensive PC Software 3.0
Big and easy to read display with simple menu structure and backlight
Big and easy to use buttons with backlight
Built-In alarm clock
Rear hose swivel connection
3 Ventilation Modes
Optional Integrated Heated Humidifier

http://www.breas.com/breas_templates/Page____832.aspx

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