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Latest Activity

ZolliStar posted a discussion
Sunday
liz4cps commented on liz4cps's group Prince William Co, VA support group
"I talked to Kimberlie at the Novant Sleep lab last week (at Prince William Hospital) and she said they would not be holding any meetings this year but are planning to start holding meetings again next year.  I'll let you know when we have…"
Jul 14
richard graham posted a status
"I just have mask called the Wisp. Hope it works. Anybody have experience with it. I have an ultra mirage nasal mask and get leaks at brid"
Jul 9
Andy posted a discussion

Resmed S8 AutoSet II - No Longer Collecting Data??

Hi All,First off, my apologies for not checking in for a long time.I've been using my Resmed S8 AutoSet II for almost 3 years! I feel great, have lost almost 30 lbs, am no longer sleepy during the day, sleep through the night, and have my short-term memory back.Yay!I've told my doctors that I'm the "poster child" for Sleep Apnea and CPAPs! It's been, and continues to be, such an amazing experience that I want everyone to know!Everything has been going well in CPAP-land, but in the last few…See More
Jul 7
hifay replied to richard graham's discussion mouth breathing
"What type of chin straps?"
Jul 6
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"No real improvement in sleep study.  Just not having to use cervical neck color.  What a bummer. Surgeon wants another sleep study in about a month or so (home one) Not sure if will do or not. "
Jun 22
Mary Z replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Ginny, how are you doing after the tongue procedure?"
Jun 22
Mary Z posted a discussion

AHI finally under five.

I have been on CPAP since March 2008 and had a good AHI when I started therapy (under 5).Then my AHI started getting worse- for a while it stayed in the 20's, then we got it to the high teens.  Nothing we did would help.  My doctor said it was due to the meds I take.  For a couple of years I just tolerated the high AHI.  I did another sleep study and changed to an ASV machine.  For two years I still had a AHI around 11-13.  Then all of a sudden - a month ago I noticed my AHI was running five or…See More
Jun 22
ZolliStar replied to richard graham's discussion mouth breathing
"FWIW, I've been alternating between my mouth device and my APAP. I haven't used humidity at all when I use the APAP -- and don't miss it, either. "
Jun 14
richard graham replied to richard graham's discussion mouth breathing
"I still use humidity but less of it. It seems to be working OK.."
Jun 14
ZolliStar replied to richard graham's discussion mouth breathing
"I rarely use the humidifier. I think it's less necessary during the summer when there is humidity.   I also switch between my mouth device and the APAP.  I like each for different reasons. Not sure with which I sleep better, though.…"
May 21
Mary Z replied to richard graham's discussion sick again
"I've been doing well.  I think you were going to try the cpap without humidity- did that help at all?  I haven't had a cold for a couple of years."
May 14
Ginny Edmundson replied to richard graham's discussion sick again
"CPAP seems to cause stuffiness in many of us.  ANother reason I hate it so much!Do you rinse your nose with saline once a day…maybe before you go to bed for the night? "
May 5
richard graham replied to richard graham's discussion sick again
"I do wake up stuffed up most days"
May 5
richard graham replied to richard graham's discussion sick again
"I do have non allergic rhinitis. Now I'm thinking that's probably it because I only feel that way for a day or 2. Thank you"
May 4
Ginny Edmundson replied to richard graham's discussion sick again
"I have been lucky.  Not one cold past three years. Could some of your problem be allergies?"
May 4
richard graham posted a discussion

sick again

It seems like I am sick with colds more often when I'm on the CPAP. Anybody experience that.
Apr 30
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"As of now I no longer have to use a chin strap.  I am anxious about the sleep study.  Wondering if I will be able to sleep WITHOUT the CPAP….even thought I hate it it is a part of every night now and is what I am used to.  "
Apr 20
Clueless in Redwood Shores replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"I had it on the same outpatient basis.  Much pain, no long term gain.  I did not have the annual repetition - that might or might not have made the difference. "
Apr 20
Mary Z replied to richard graham's discussion mouth breathing
"glad to hear it, Richard.  Keep us posted."
Apr 13

Just heard from a sleep tech that her sleep center, located within a  highly prestigious hospital in one of America's largest and most affluent metropolitan centers, fills patients humidifiers with tap water on CPAP titrations.  furthermore, a 7 year-old child contracted Legionnaires Disease and died from being titrated with a CPAP humidifier filled with tap water.

Make sure you insist on distilled or reverse osmosis/ purified bottled water for your CPAP titrations in the sleep center.  The life you save may be your own.

Tags: cpap, legionnaires, titration

Views: 2643

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Replies to This Discussion

There  are so many nested comments about distilled water that I can't follow it. To sum it up, why is there such a long discussion  bout using distilled water? It's 89 cents a gallon and lasts quite a while. Play it safe and use distilled for sleeping with, for washing and for rinsing the tank. I never had a buildup or had to replace the chamber using distilled and a bit of vinegar once a week and baby shampoo and distilled to wash and rinse every day.

to some people it is not important but to others it is very important and all for different reasons 

I guess you're right but I'm just doing what the DME told me to do. It's simple and it works for me.

99 said:

to some people it is not important but to others it is very important and all for different reasons 

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

Very interesting, Sherry. Thank you.

Sherry Rachauskas said:

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

sunlight and UV light an act as disinfectant

Exposure to sunlight has been shown to deactivate diarrhea-causing organisms in polluted drinking water. Three effects of solar radiation are believed to contribute to the inactivation of pathogenic organisms:

  • UV-A interferes directly with the metabolism and destroys cell structures of bacteria.
  • UV-A (wavelength 320-400 nm) reacts with oxygen dissolved in the water and produces highly reactive forms of oxygen (oxygen free radicals and hydrogen peroxides) that are believed to also damage pathogens.
  • Cumulative solar energy (including the infrared radiation component) heats the water. If the water temperatures rises above 50°C, the disinfection process is three times faster.

At a water temperature of about 30°C (86°F), a threshold solar irradiance of at least 500 W/m2 (all spectral light) is required for about 5 hours for SODIS to be efficient. This dose contains energy of 555 Wh/m2 in the range of UV-A and violet light, 350 nm-450 nm, corresponding to about 6 hours of mid-latitude (European) midday summer sunshine.

At water temperatures higher than 45°C (113°F), synergistic effects of UV radiation and temperature further enhance the disinfection efficiency

Enrique and others looking for the news story -- i just looked for the news story myself, and didn't turn anything up.  But that means nothing. Especially for those of you who work in the medical field, you know how often physicians and other health care workers make mistakes. . . and how common it is for them to cover them up.  My RN friends tell me cover ups happen all the time.

i think it is twist truth back in1997

where legionaries disease was attributed to a whirl pool

this maybe how they want to explain their version to avoid implicating a CPAP 

OK, here's an official statement on Legionnaire's and water. http://www.state.nj.us/health/cd/legion/documents/legion_icg.pdf 

IOW, use distilled water and regularly sterilize. Yes, it's for a hospital setting but germs are opportunistic in any setting. They do say that immune-compromised people are at higher risk to come down with it.

Sherry:

I told her to dilute the bleach 1 to 5 to kill any bacteria and then wash until the smell goes away. This is what is normally done in hospitals in the USA.

I have asthma for 74 years and have had no problems with this in a dilute form. If you don't like the bleach fumes, you need to stay our of pools as sodium hypochlorite (bleach) is the same chemical used in pools, spas, etc.

Bleach is a 3-6% solution of NaOCl with some sodium hydoxyide to keep it stabilized. A 12% solution is used in municipal water treatment facilities for sterilization in a ratio of 1 to 4000. If you have a well drilled, they will pour down a gallon of household bleach down the well to sterilize the well. You do then let the water run until the smell disappears.

Sodium hypochlorite is one of the most effective disinfectants. Hydrogen peroxide, while definitely not as effective, can be used without dilution as this is nothing but water with an extra oxygen molecule. We used a mixture of hydrogen peroxide and baking soda for years as our tooth paste at the recommendation of our previous dentist to kill the bacteria beneath the gums. This allowed my wife avoid painful gum surgery. I just rather use something stronger at the end of the humidifier season.

Sherry Rachauskas said:

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

Boiling tap water may kill any bacteria or viruses but it also concentrates any contaminants such as chlorine, rust, lead etc.  Please don't use boiled water. Avoid breathing in those concentrated chemicals forced into your lungs all night.  Distilled water is the best water to use.
Jan

Gordon,

 

Not arguing with your advice, just everyone cannot use bleach w/o some problems. You are right, I cannot go in pools or hot tubs because I cannot tolerate the chlorine. I have a compromised immune system and have the markers for some type of immune disorder that has not fully developed yet and am being watched for development.  In my case, peroxide is the better choice. And yes, I do use mine full strength, but was advised to split 50-50 with water for easier rinsing. It just doesn't bother me like bleach does, so I prefer peroxide.  I think this forum is great for discussing all the options, since everyone has a different experience, what works for one, may help someone else, but will not work for everyone. Use the advice, but always discuss with your doctors if you are unsure.


 
Gordon H said:

Sherry:

I told her to dilute the bleach 1 to 5 to kill any bacteria and then wash until the smell goes away. This is what is normally done in hospitals in the USA.

I have asthma for 74 years and have had no problems with this in a dilute form. If you don't like the bleach fumes, you need to stay our of pools as sodium hypochlorite (bleach) is the same chemical used in pools, spas, etc.

Bleach is a 3-6% solution of NaOCl with some sodium hydoxyide to keep it stabilized. A 12% solution is used in municipal water treatment facilities for sterilization in a ratio of 1 to 4000. If you have a well drilled, they will pour down a gallon of household bleach down the well to sterilize the well. You do then let the water run until the smell disappears.

Sodium hypochlorite is one of the most effective disinfectants. Hydrogen peroxide, while definitely not as effective, can be used without dilution as this is nothing but water with an extra oxygen molecule. We used a mixture of hydrogen peroxide and baking soda for years as our tooth paste at the recommendation of our previous dentist to kill the bacteria beneath the gums. This allowed my wife avoid painful gum surgery. I just rather use something stronger at the end of the humidifier season.

Sherry Rachauskas said:

I guess this is good to discuss, and always be aware of what is being put into your body, even in a medical climate. But the scare factor is off-putting to me.  I would like to see a news article to back this up, and am dismissing the Legionaires thing until I see it.

With that being said, you can do everything possible to ensure your safety.  Believe it or not, tap water is not the only source of contamination. If you have a leak in your plumbing system or even the the faucet itself is a source of bacteria. I had my well water tested for a home daycare license, and it failed due to contamination. The health department wanted to condemn my well! After a more experienced inspector came out, we broke my faucet down, cleaned it with bleach, put it back together and guess what? Clean bill of health, no contamination. How many people think to unscrew the end of their faucet and clean it?  Well I do now. But I use distilled water in my tank to sleep with every night.

Another thing that I saw being discussed, was using bleach to disinfect your chamber. While this seems ok on a surface level, would you huff bleach?  If you need to clean your chamber of some type of calcification, use a vinegar and water soak, and then decontaminate. Use a 50-50 mix of water and hydrogen peroxide. The peroxide will kill the bacteria but will not leave the harmful fumes of bleach.  I don't have any problem using tap water with the peroxide to clean the chamber, just won't sleep with tap water in the chamber.

I have asthma and very sensitive lungs due to a long childhood inhaling 2nd hand smoke, the peroxide has never bothered me and I have never (knock on wood) had a sinus or bronchial infection (other than a bug caught from my family) since I began using my CPAP. Hope this helps.

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