Distilled water for CPAP

[Tom Taylor]

I just returned from Disney World and discovered something I have not seen in these forums for CPAP users. I stayed at POR and found that they carry distilled water in a gallon jug in the gift shop. I also had occasion to go to AKL later in the week and discovered it there too. I did not price shop since I had my supply but for convenience it is available. Hopefully enough of us will buy it so they keep it available.

 

[RaySharpton]

Thank you, Tom. That is good to know.

I have seen threads in the past wondering how they would best get distilled water for their CPAP devices.

Most were wondering where the closest store was located so that they could take a taxi cab.

 

[Cheshire Figment]

Minor point. The use of distilled water is not required by the machine. The reason that its use is recommended is that the water is evaporated to increase the humidity and will go into your lungs. If you are using distilled water, there will be no additives or minerals in it.

 

[RaySharpton]

Minor point. The use of distilled water is not required by the machine. The reason that its use is recommended is that the water is evaporated to increase the humidity and will go into your lungs. If you are using distilled water, there will be no additives or minerals in it.

That is true Cheshire Figment.

I don't use water in my NCPAP machine either until the winter weather comes and the dryness tends to cause my nose to become dryer and tend to cause nose bleeds.

Then, I use water to help humidify the air to help with the nasal dryness.

But when I do use water, I use distilled water.

Just like any device that you may want to keep mineral deposits that are found in tap water from sticking to my NCPAP machine and tubing, I like to use distilled water. It makes it easier to clean my tubing and reservoir in my NCPAP machine, too.

The nose and the nasal passages are amazing in naturally humidifing and warming the air before it reaches the lungs.

If you are in freezing weather, for instance, and the the temperature is below 32 degrees F., and you breath just through your nose; the cold air is filtered of and small particles, and warmed to 98.6 degrees F. before it reaches your lungs.

Pretty cool.

But sometimes we need help with humidification when using high flow of gas pushing in our nose to create increased pressure to help keep our airway open like what a CPAP machine does.

Some people require humidification all of the time with their CPAP devices.

Some people like me, don't need humidification/water in their NCPAP devices until the dryer weather comes when winter starts.

I hate nose bleeds, doesn't every one.

When you go to a hosital and are placed on an oxygen device, you may notice a small plastic bottle of water which is sterile from the manufacturer or distilled water is used in reusable bottles in some bottles.

Oxygen or the gas coming out the wall is dry. The water bottles helps slightly humidify the gas before entering the nose.

A simple oxygen device like a nasal cannula may not need humidification like a water bottle with low flows of one or two or three liters.

But as the flow of oxygen increases, especially in a CPAP device that uses very high flows of air inorder to create pressure, and some people are more sensitive to dryness and nose bleeds and may require water/humidification.

And of course, any more complicated device via an airway to your lungs like an endotracheal tube or tracheostomy that use dry gas from a hospital wall whether it uses oxygen or air or combination of both, you will need it to be heated and humidified and filtered before entering the lungs since it bypasses the nose completely.

If you want to keep the nasty stuff from mineral deposts out of your CPAP machine and make it easier to clean, I would use distilled water.

If you are like me and don't need humidification 12 months of the year, then don't use the waterunntil your nose tells you that you need it .

I guess that it is a personal thing.

Everyone is different.

I wonder if being in a very humid state like Florida makes a difference.

I don't know.

But, when I go to WDW this December, it is nice to know that I won't have to go offsite to Walmart or Publix and buy my one gallon of distilled water.

 

[bouncy54]

You guys are so far ahead of me. I just got my CPAP today and silly me.. the thing scares me to death. Don't know why. I tried the "pillows" style, but I'm a mouth and nose breather so couldn't get to sleep because I was concentrating all night trying to breathe only through my nose. So I asked for a soft gel mouth and nose mask, now I'm scared to try it.

This whole oxygen and CPAP thing has my head spinning. Just 4 weeks ago, I was planning a relatively calm WDW vacation.. now everything seems so complicated. Finding out that I had Pulmonary Artery Hypertension just a few weeks before our vacation hit me like a ton of bricks and I'm feeling totally overwhelmed by all this stuff.

My oxygen supplier just informed me today that I will have to use the Evergo system at the parks. http://twitpic.com/33pyhi I wanted to just use a couple of the portable cylinders, but that's not how they have it all planned and since they're paying for it, it's their decision to make.

The thing is so expensive that it has me all paranoid that something will happen to it while I'm there. It's very nice and quite compact, but hauling a $4000.00 piece of equipment around with me in the parks has me nervous.

Going through security at the airports seems daunting to me too. It was bad enough just having to take off my shoes, ( ) but now they're going to want to see all this other equipment too.

I guess I just need some encouraging words from others who have experienced these same things while on vacation.. or maybe even a

 

[C&G'sMama]

Bouncy 54,

I've been on a CPAP for a little over a year. It took me 'til I crashed my car after falling asleep at the wheel to realize I had a problem.

I started out with a nasal mask and it didn't work for me as I also am a mouth breather. I got very frustrated. After a few weeks I went to the full face mask and my life changed (in a good way) as I was final getting real sleep.

I can't speak to the airports as we drive, but it's such a standard piece of medical equipment I don't see it being an issue in security. I can't speak to the oxygen but I'm sure there is Airline Protocol out there somewhere for that too or ask your supplier.

I do better with the humidifier but I manged to leave the well home once and had to do without for almost 2 weeks. It worked out okay. I just used a saline rinse for my sinuses more during that time.

To OP, thanks for the info on the distilled water being available.

 

[RaySharpton]

Hello, bouncy54. I just wanted to say that you will feel much better after several months of using your C.ontinuous P.ositive A.irway P.ressure device.

I tried the "pillows" style, but I'm a mouth and nose breather so couldn't get to sleep because I was concentrating all night trying to breathe only through my nose. So I asked for a soft gel mouth and nose mask, now I'm scared to try it.

I am a basically a nasal breather. But with using a higher pressure of +20 cmH2O blowing through my nose, I just thought that I might do better with a nasal mask instead of the newer, much smaller, nasal cannula style, pillow mask. It was so small, but everyone that can use it says that it is so easy to sleep with it being so small and soft compared to the nasal mask or the mouth/nasal mask.

I am sorry that you had so much problem trying to sleep with the nasal mask and worried about trying to keep your mouth closed.

Your physician and CPAP device staff person should have helped you more to try and find the right device for you. I hope the full mask works for you and you can relax and sleep at night better.

Please do be afraid to try your new mask.

Practice putting the mask on like they should have had you done at the physician's office over and over again until you are comfortable.

There are so many companies and manufacturers and contractors that use so many type of CPAP devices and face appliances that it is difficult to know what one specific mask looks like.

But I am sure your physician showed you how to place the mask over your chin and nose.

And I hoped that they helped you with the head strap that came with that particular mask.

I can only guess that it should have four places to attach the strap to the mask.

Once you get the correct fit, you should only use one of the attachment sites to take the mask off and put the mask on each time.

My strap has a push button on the corner of the mask that allows it to release one strap and allows me to easily slide the mask and tubing off of my face and head.

I feel confident that you will eventually become very proficient at this with practice. You will even be able to turn off the CPAP device while removing your mask at the same time when you need to get out of bed for whatever reason.

I think that you will do just fine.

This whole oxygen and CPAP thing has my head spinning. Just 4 weeks ago, I was planning a relatively calm WDW vacation.. now everything seems so complicated. Finding out that I had Pulmonary Artery Hypertension just a few weeks before our vacation hit me like a ton of bricks and I'm feeling totally overwhelmed by all this stuff.

I didn't know that you had to use oxygen, too.

But this oxygen usually just plugs into a line into your tubing or mask.

I am not familiar with the small cannisters that they may use with oxygen.

I can't imagine how you must feel with all of this information and how overwhelmed that you must feel.

But I think that you will figure out how to best use your CPAP and oxygen that will best for you and you will be on here in six months telling everyone how you do it and helping others that are in similar situations as yourself.

You can do it.

I just feel that you can do it, I know that you can do it.

My oxygen supplier just informed me today that I will have to use the Evergo system at the parks. http://twitpic.com/33pyhi I wanted to just use a couple of the portable cylinders, but that's not how they have it all planned and since they're paying for it, it's their decision to make.

I saw the picture above. It sure does look small.

Is this the whole CPAP and oxygen system without the mask and tubing showing.

In the olden days when people used to use oxygen vis nasal cannula, people used to carry around these very heavy, metal e-cylinder oxygen tanks around.

Once I saw someone roll the tank behind them while walking. Many wheelchairs and mobility scooters had special e-cylinder carriers that could be attached.

If I were to use oxygen at home, I would probably use an electric oxygen concentrator that simply uses the air in the room and removes the nitrogen in the air and concentrates the oxygen. No oxygen tanks, just an electrical outlet.

I am not familiar with all of the new advances in oxygen portable devices like the smaller tanks using liquid oxygen or gas oxygen.

There may even be something newer out there.

It sorta sound like to me that you have been using oxygen before having to use CPAP since you mention that you would like to use tanks.

That picture is so small. It is amazing how technology keeps advancing every year.

The thing is so expensive that it has me all paranoid that something will happen to it while I'm there. It's very nice and quite compact, but hauling a $4000.00 piece of equipment around with me in the parks has me nervous.

I know about expensive, too. It is amazing what insurance will or will not cover.

Thank goodness that I have insurance and a job when so many families in this country have lost their jobs and insurance and even their homes.

This weighs so heavily on my heart.

Going through security at the airports seems daunting to me too. It was bad enough just having to take off my shoes, ( ) but now they're going to want to see all this other equipment too.

I haven't flown in a plan in over 15 years, so I can't help you here.

But I would just suggest practicing openning and closing your CPAP bag and become familiar what each section does.

Like here is a mask and the tubing that goes to the machine and the machine with the electric cord or battery to operate it. Then the oxygen and the oxygen tubing and case. Just like you could open your own suitcase and sayt that these my my suits and these my toiletries, and this is my camera.

I guess I just need some encouraging words from others who have experienced these same things while on vacation.. or maybe even a [/QUOTE]

I will send you tons of encouraging words.

You will do just fine.

And usually after several months or more you should feel a difference and others around you might notice a difference in you.

You won't feel a difference overnight.

But after awhile you might wonder if your CPAP is still on because you may get very accustomed to the high flow and high pressure.

Hard to believe, but this happened to me.

I actually thought the machine was broken and not working properly until I took the mask off and noticed the high flow of gas coming out.

Have a wonderful vacation.

 

[RaySharpton]

Bouncy 54,

I've been on a CPAP for a little over a year. It took me 'til I crashed my car after falling asleep at the wheel to realize I had a problem

Hello, C&G'sMama.

I can't imagine that. I am so sorry.

I started out with a nasal mask and it didn't work for me as I also am a mouth breather. I got very frustrated. After a few weeks I went to the full face mask and my life changed (in a good way) as I was final getting real sleep.

It took me much longer to realize that I was getting good sleep.

But after awhile, I realized that I was feeling better at work instead of feeling so restless and irritated. Working 12 hour nights and then trying to sleep for the next day was difficult for me.

I thought that I was just running on adrenaline after a busy night of work.

Or I had too much coffee at work to help me stay alert. And I don't drink coffee at home.

Or that I was waking up every hour at home while trying to sleep because of something else.

But now, I am so glad that I use my NCPAP.

I feel better and everyone at work says that I am less irritable at four A.M..

I do better with the humidifier but I manged to leave the well home once and had to do without for almost 2 weeks. It worked out okay. I just used a saline rinse for my sinuses more during that time.

I don't usually take my humidifier that separated from my NCPAP device on vacation, but I will this time.

I may try normal saline or saline rinse to my nasal passages, too.

Less equipment to pack...less cleaning of equipment without the humidifer.

Thank you for the information.

 

[cm8]

You guys are so far ahead of me. I just got my CPAP today and silly me.. the thing scares me to death. Don't know why. I tried the "pillows" style, but I'm a mouth and nose breather so couldn't get to sleep because I was concentrating all night trying to breathe only through my nose. So I asked for a soft gel mouth and nose mask, now I'm scared to try it.

This whole oxygen and CPAP thing has my head spinning. Just 4 weeks ago, I was planning a relatively calm WDW vacation.. now everything seems so complicated. Finding out that I had Pulmonary Artery Hypertension just a few weeks before our vacation hit me like a ton of bricks and I'm feeling totally overwhelmed by all this stuff.

My oxygen supplier just informed me today that I will have to use the Evergo system at the parks. http://twitpic.com/33pyhi I wanted to just use a couple of the portable cylinders, but that's not how they have it all planned and since they're paying for it, it's their decision to make.

The thing is so expensive that it has me all paranoid that something will happen to it while I'm there. It's very nice and quite compact, but hauling a $4000.00 piece of equipment around with me in the parks has me nervous.

Going through security at the airports seems daunting to me too. It was bad enough just having to take off my shoes, ( ) but now they're going to want to see all this other equipment too.

I guess I just need some encouraging words from others who have experienced these same things while on vacation.. or maybe even a

 

[mainegal]

Just got back from my sleep study two hours ago and where do I go to research CPAP? DISboards! Crazy!

I do have obstructed sleep apnea. I am a little nervous about wearing a mask over my nose, will it disrupt my sleep?

But if it means I will not be falling asleep during meetings, plays and while driving home, it will be good!

Send encouragement, please!

 

[RaySharpton]

Just got back from my sleep study two hours ago and where do I go to research CPAP? DISboards! Crazy!

I do have obstructed sleep apnea. I am a little nervous about wearing a mask over my nose, will it disrupt my sleep?

But if it means I will not be falling asleep during meetings, plays and while driving home, it will be good!

Send encouragement, please!

Hello, mainegal.

I send you lots of encouragement.

Some people don't like anything on their face like some people don't like to wear eye covers to block out light if the sleep during the day if they work at night.

So every one is different.

And your sleep has already been interrupted because of the obstructed airway which causes the apnea or cessation of breathing when you try to sleep.

It may take a little getting used to find the right mask and pressure for you, but after a few months you should feel like you are getting a better nights sleep.

Don't be shy.

Make sure your physician or healthcare provider gives the type of nasal mask that fits for you.

You may have an appointment after using the CPAP a couple weeks later to see how everything is working.

Some of the newer CPAP machines have a memory card in the CPAP machine that keeps a record of your apnea while you sleep that they can plug into their computer to see how you are doing.

You can do it.

 

[ToddyLu]

I haven't read through all the threads...so if I repeat any info just ignore me.

DH and I have dualing CPAPs. I have mine using a nasal pillow and DH has to use a face mask. I could really tell a difference at first. I could jump out of bed and add things in my head...not drag around like a zombie for an hour. DH has gotten more chatty. He also has insomnia since becoming a firefighter and working 24 hour shifts. He takes AMbien on the nights he does not work.

Traveling with a CPAP is easy. You can either check it with luggage ore carry it on with you in its case. When we have carried them on, I make sure that the machine part is out of the case and free for the security check...they have to wipe it down. If it is sealed up they will make you take it out to wipe it off and give you a look and tell you to get it out the next time. If you check it...I have checked it in my CPAP case, with a piece of electrical tape with CPAP written across it becasue it flies free, since it is medical equipment. Now that DH has one I put them booth in a 17" roll on wrapped in bubble wrap then secured inside their pouches, with the same electrical tape sign CPAP on the outside. It is the perfect size suitcase for the hoses and other parts. We both use our humidifier. DH will only use distilled water however I am a hippie and am fine with regular H2O when needed.

I am so glad to know that AKV has distilled water. DH and I looked for it last year and they were talking about adding it since there were so many requests.

I like my nasal pillow becasue it is very soft and actually stays in place better for me. My face mask would always be ajar in the morning. DH has to have the face mask because if it slips off at night the pressures are so high, our Jack Russell and I would be sucked up into it. Just wait until you are asleep one night and the power goes off....having that thing on your face....freaky deaky.

I am glad to know that there are other people out there with these problems, too.

 

[ToddyLu]

RaySharpton is correct be sure to let your CPAP company know if you are having problems, they want you to be happy and your insurance has paid a pretty penny for the machine. I have had to get a couple of different masks before I was happy....don't give up if it doesn't work out the first few nights...keep at it.

I could tell when my boss didn't wear his---his skin tone would be different and it would creep him out when I would tell him..."you didn't wear your machine last night, did you?" OP please let us now how it is working out for you.

 

[TealHearts70]

Thank you to the OP for posting this! We are flying down this trip and I was scared of the thought of not having distilled water for my cpap.

 

[Sadie22]

It is so great to hear that so many others are getting treatment rather than denying this serious problem. And thanks to the OP for letting us know that distilled water is available on property. I never thought to look when I was there this summer since I had carried my own.

Anyone who has trouble with their masks can contact their supplier for help with additional fittings or their sleep specialist for prescription of a different device. You might have to do another sleepover but your team will make sure you have what you need. I fortunately need only the nasal pillows held on by a few Velcro straps with a chin strap to hold my mouth closed, while I know some of you have full face masks. But anything is better than falling asleep anywhere and everywhere.

 

[mainegal]

It is so great to hear that so many others are getting treatment rather than denying this serious problem.

anything is better than falling asleep anywhere and everywhere.

Exactly! I have been in denial for way to long!
I am now actually looking forward to getting the CPAP machine because, as you say, anything is better than falling asleep anywhere and everywhere!

 

[C&G'sMama]

Hello, C&G'sMama.

I can't imagine that. I am so sorry.

Thanks, it was literally a wake up call for me. I'm glad to see others haven't let it get to that point and hope others won't.

My DP said I was too tired all the time. This went on for well over 2 years. I would fall asleep in the bathroom at work, I would take 3 hour naps on both Saturday and Sundays, I could barely function during the week. But in my mind, I was normal. My Dr. told me to go to a sleep study. Nahh, I don't have time for that. Well one day I left work early to go down to where we were camping for the week about 45 miles away from my office. I felt drowsy but did the usual pumped up the air conditioner, blasted the radio etc. While all of the sudden I'm pulling out of a guard rail I had run into after I fell asleep at the wheel. No more than 10 minutes later DP and the kids pulled up in the van. They had gone to the pool at the park where the cabins were and had come back a different way than normal. Lucky for me.

So there were a lot of what ifs, what if it hadn't been a guardrail but a car, or a bus, or an enbankment? "What if" I'd been killed and my kids drove up to that. I was very lucky. No one else was involved and I was not hurt. I got priority for a sleep study.

I truly believe the CPAP saved me and it saved my family and our relationships. I'm actually starting to feel tired again, so I need to get back in to the clinic, but I'm doing so much better than a year and half ago when I crashed my car.

I tell my story hoping others won't let it get to point I did. It's not "normal" even though for us the sleeplessness becomes normal.

 

[SueM in MN]

Great to know they have distiller water. CPAP is very common, so I am sure they were getting a lot of requests for it.
I just have a few comments to add to this excellent discussion.

- Many people have posted in the past that they did not need added humidity in Florida because it is so humid in Florida compared to home. So, if you can't find distiller water, you may still do OK without it.

- It's best to always carry medical equipment onto the plane unless it will be too large to fit in the overhead bins or underwear storage. If you can't do without it for 24 hours or if it would be difficult or expensive to replace if lost or broken, carry it on with you. If lost or delayed, the airline has 24 hours to get it to you before they have to pay any penalties.
Airlines don't permanently lose bags like they did many years ago. It's fairly common to have bags delayed though. With bar coding and all the monitoring they do, they usually know where your baggage is, but that doesn't help when you got on the plane and your bags didn't.
On 2 recent round trip flights, we had late bags on the arrival portion if one flight and the return home of the other. Luckily didn't have anything vital in any of the bags. So my advise is, don't check medical equipment unless absolutely necessary.

- there is more information and resources about air travel and going they security in the disABILITIES FAQs thread. You can find that thread near the top of this board or follow the link in my signature to get there.
The air travel part has links to the TSA website pages that might be helpful to you. Remember, it is your first time traveling with this equipment, but it won't be the first time that TSA agents have seen it. CPAP is pretty common.

- For equipment in the parks, as was already mentioned, you can rent ECVs from off site rental companies that have equipment holders attached. Post 2 of the disABILITIES FAQs thread has links and phone numbers to companies DIS Posters recommend. You can stay on the wheelchair or ECV through the line and to boarding of all shows and most other attractions. When you leave the wheelchair or ECVZ to transfer to a ride car, the ECVs and wheelchairs will be parked in an area that is out if traffic paths, so it's not just out in the open.

Last piece of advise - have a great trip and come back after to let us know how great it was.