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If you had two pieces of advice to give a newbie....

...what would those two pieces be?

A lot of us would really benefit from the been-there, endured-that experience you veterans have to offer us.

AND....

Happy New Year!

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I know what you  mean, Karen. My view? We should be patient with those who don't "get" it about sleep apnea and the challenge we face.

It's hard to appreciate, truly appreciate, others' challenges. I recall decades ago my mother said that she didn't truly understand her mother until she, too, was a mother.

Thank God for this forum! We can vent and share. WE understand! 

Karen M Laass said:

Patience - finding a mask that works for you and getting used to the mask takes time and a lot of persistence - hang in there!!!

Don't expect others (family/spouse) to fully understand what it is like to have sleep apnea.  They have never lived life on a 1/4 tank of energy and have no CLUE what it is like to "sleep" but still not feel fully rested.  I think this has been one of my biggest frustrations - dealing with others "perceived" view of my sleep apnea and asking "how can you sleep so much?   or...."you're sleeping your life away."  Quite insensitive, and very uninformed.

Thank you for this advice, Bill.

I don't know which mask is really best. Right now I'm using/trying Swift LT nasal pillows. That said, I kinda liked my Mirage Micro nasal mask. I don't think I wore it correctly, though. I think I'm going to take the advice of many on this board and thread and use liners with it. Might end up much happier with the nasal mask.

We're all grateful for your contribution here.



Bill BIstak said:

As an RT, this is so difficult to answer because one answer leads to another question or question set....

 

I'll try though ;)

 

1) Be a stickler for a very comfortable mask, full face masks wear differently than nasal pllows and each type of mask demands a different breathing pattern, which determines how quickly you can get used to the mask and positive pressure from the sleep device you ultimately acquire.

2) Get as educated about your OSA (mild, moderate, severe, etc) as much as possible.  

And know how you can achieve optimal sleep with the mode of treatment that is decided along with your doctor, RT, clinician, sleep technician etc.

Sometimes, this optimal sleep formula involves information that is very consistent with all of the professionals involved in your care.

And sometimes information can get misinterpreted easily (no one's fault, it has to do with how much information is passed along the professional chain).

And each person has a slightly different focus for your proper care;

1) mask fit and ideal PAP unit (from RT or clinician perspective)

2) ideal pressure (from sleep technician perspective)

3) AHI control (sleep doctor perspective)

 etc.

 

I could write volumes more but this is the heart of it all.

 

Here's to great sleep!

 

Bill 

That's the problem that c-flex solves isn't it? I had troubles the first few nights and figured out c-flex. Breathing agains 12 cm was hard to me. It's easier now.

Paul S. Myler said:

As both a CPAP user, and a Registered Respiratory Therapist, I wil give you two pieces of advice.
First, mindset is everything.. Sleep Apnea is not a weakness (men), it is a medical condition that often
preceeds weight gain, and can be worsened by weight gain. Your view and full understanding of your
condition is paramount. Understanding it helps you accept it. Once you have accepted it, you can then
own it. This will help you when you wear it. My pressure was 17cm to start with, so I understand the struggles
you will be facing. I can honestly say that I used my CPAP all night the very first night, and have never looked back.Second, prepare yourself. This is a lifelong commitment that will change your views on sleep, and how important it is. If you arm yourself with these two facts, you will be greatly helped in this area.
I do want to let you know that I worked with a DME company for 2 years, and I encountered many people
with a condition known as CPAP failure. It exists when a patient has difficulty exhaling against the pressure
the CPAP delivers, and is marked by a feeling of suffocation, and ripping the mask off during sleep. There are
other indicators, but these are hallmarks of this problem. If you want to know more about this, please
feel free to email me at rtman0509@gmail.com.

http://www.cpapplus.com/cleaning/tube-brush.html  You can put it in both sides clean the hose with mild liquid soap (castile soap is the mildest dont use scented and if you do let it air out and dry and run the cpap without using it for a few hours, scented soap its BAD for your lungs) and water hot enough you would do dishes in any hotter will melt the hose and cause it to lose its flexibility. 

NEVER use any clorine based cleaner on any part of your cpap.  I knew someone that used CLR on their Cpap I yelled at him but apparently it didnt sink in right away because he was always coughing. 


I asked my RT about the brush and he said that is overkill.  Your 6 ft hose does not come in contact with anything put air, so if you keep your filters clean it does not need anything but a good rinsing with some mild soapy water and some vinegar water. 
ZolliStar said:

A six-foot long brush! Wow, where does one buy that? I'll do it, pronto.



Brett Husebye said:

Use distilled water.  Keep everything clean and get the 6 foot long brush to clean the hose, use vinegar and water to clean it (humidifer, mask, hose).

BS and thats not bachelors of Science.  If you use a CPAP with a humidifier you need the brush unless you throw your hoses out every week.  It gets disgusting :P

Mold, bacteria, fungus, algae yummy stuff to leave in your hose.  If you use a humidifier you can get that.  Clean the hose.  And its NOT overkill.  I can actually smell whats in the hose.  If you never clean it your sniffer must be broke.  And Marianne Kleminski if I had your RT I would fire them. 

Thanks for this information and for the site, Brett. I found all kinds of things on the site.

Brett Husebye said:

http://www.cpapplus.com/cleaning/tube-brush.html  You can put it in both sides clean the hose with mild liquid soap (castile soap is the mildest dont use scented and if you do let it air out and dry and run the cpap without using it for a few hours, scented soap its BAD for your lungs) and water hot enough you would do dishes in any hotter will melt the hose and cause it to lose its flexibility. 

NEVER use any clorine based cleaner on any part of your cpap.  I knew someone that used CLR on their Cpap I yelled at him but apparently it didnt sink in right away because he was always coughing. 

I agree with all of TorontoCPAP guy's suggestions, other than only the  FFM for ALL users. If you sleep soundly on your back without thrashing, such as I do, the nasal pillows are minimal on your face and easily tolerated with adding a lanolin ointment to lubricate the nares and establish a better seal. Some side sleepers like the nasal mask. FFM tend to have more leaks and can be difficult when you open your mouth.

The C Reactive Protein is to screen for the cardiac risks & systemic inflammation, but why the aldestorone? 

I don't agree with this, I also believe a brush is overkill.  I can change my hose every 6 months.  Soap and water are fine between new hoses.  My hoses don't get disgusting.

Brett Husebye said:

BS and thats not bachelors of Science.  If you use a CPAP with a humidifier you need the brush unless you throw your hoses out every week.  It gets disgusting :P

Certainly not all germs are visible to the naked eye.  Cleaning with the described brush

can't hurt anything.  

Also a question???    I clean my mask and tube with a warm soapy solution of 

Dawn dish detergent, and rinse thoroughly with plenty of water.  What can I use that

might be better??

Mary Z said:

I don't agree with this, I also believe a brush is overkill.  I can change my hose every 6 months.  Soap and water are fine between new hoses.  My hoses don't get disgusting.

Brett Husebye said:

BS and thats not bachelors of Science.  If you use a CPAP with a humidifier you need the brush unless you throw your hoses out every week.  It gets disgusting :P

Wade, I buy a solution for my sleep clinic which is just liquid soap without and fragrances added. It is basically what you can buy from a supermarket. I agree with Mary about the overkill of the brush but if people want to buy it then it is up to them. I put my hose, mask etc in the sink basin with the liquid soap once a week on a Sunday and let it soak for about 30mins then rinse and dry. Sometimes I will do it mid week as well if I feel it needs it. Sp far I'm OK after 9 months of use.

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