can't tolerate xpap in the heat

[girlsaylor]

Looking for ideas on how to keep using this therapy during the steamy summer months. We're on a sailboat in So FL, and til about mid-May I was managing. We have the largest drop-in air conditioner made for the salon hatch, but none for the odd-shaped trapezoidal one in the forward berth. No funds for another one right now. Tried to get a regular window a/c, but have no way to remove the condensate, with structural beaming in the lockers, no way for it to drain to the bilge. Even sleeping in the salon, so hot I'm nauseated from the heat and struggling to breathe due to my other health problems.

I have no shower; just a little hand-held nozzle I attach to the sink in the head. I've tried washing my hair before bed and sleeping on a terry towel on the pillow to try and cool myself down. A small amount of relief, but still feel like I'm suffocating without the mask. It's ten times worse as soon as I try and put on the nasal pillows, which is the coolest of my collection. We do not have refrigeration, so putting ice in a hot water bottle or something like that is not an option.

I know I need to be using my bipap. I feel like I'm suffocating when I try, just since it's gotten so hot here. I try everything I've read, fan on my face, cool wet washcloth on my legs, nothing works. I'm sweating so badly I can't keep even nasal pillows on. My lung disease appears to be worsening, with CO2 buildup becoming more problematic, in my last pulmonary function tests. So it's crucial I get cooled down enough to use this bipap machine. Help!

girlsaylor

[NomoreCrashcart]

Hey there, girlsailor, I am worried about you. It's just going to get hotter for the next couple of weeks until things start cooling down a bit. I hope you might be in a position to consider asking a friend for help and bunking somewhere cool for a night or two just to take the edge off. You might want to call the Red Cross and see if you can bunk in a shelter for a night or two.

The only other suggestion I have--and it, too would only be good for a tiny march of time--would be to keep your distilled water in somebody's icebox and fill up right before you turn on your machine. You don't mention whether you're anchored in the channel every night or in a slip... but for goodness sake make a friend with a 'fridge or get a dorm refridgerator from Wal-Mart for $50.

You mentioned 'other health problems,' so I can't help but wonder how much fire you're playing with there, girl. I really... REALLY... hope you find some relief and get lots of ideas.

[JZ]

girlsaylor,

Sorry you are having such a hard time. I know that south Florida heat and humidity can be brutal.

I have seen some posts here about putting cold water in the humidifier and using it as passover. They say it is very refreshing. The water probably would not stay cold long, but maybe long enough to help you fall asleep.

I see you do not have a refrigerator, so chilling distilled water may be a challenge. I have one of those really good double walled ice chest/coolers. I got it when I lived in Tampa. As a displaced Texan, I really missed Blue Bell ice cream. Blue Bell was introduced in Orlando about a year earlier than it was in Tampa. So, during that year, when I would visit family in Orlando I would get a couple of gallons of Blue Bell, put them in the cooler without ice and head back to Tampa. The ice chest kept them rock solid for the two hour trip.

I have used the ice chest on vacation as well. I can put in a 10 lb. bag of ice and some of it will still be ice a couple of days later. If you don't have one of those, it might be an option for keeping cold distilled water.

I am hoping that others will have some more powerful suggestions to help you.

Janna

[RosemaryB]

Although I don't know what other health problems you have, I agree with others that you need to get the therapy from your bipap. I'm not sure if you have another place to live or if you are living on your boat full time. If you have another place to live, I'd suggest that you consider living there or with family/friends during the hottest summer months and being on the boat when it's not so hot.

You probably already know this, but if you are using a humidifier you should try it at the lowest settings or turned off altogether (called passover mode) when it's hot and humid.


ETA: There are room size air conditioners that you don't need to hang out the window. They have a bin that collects the water, kind of like a dehumidifier. When you get the money, you may want to look at one of these to see if it would help.
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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, humidifier

[Roadie]

If the only obstacle to the additional air conditioner is the condensate you could try a small pump like the one in this link.

http://www.homedepot.com/webapp/wcs/sto ... key=Search

Of course it is going to need shore power, or some other 115 volt power source. It would allow you to pump the water up hill to an appropriate drainage. Just get enough of the tubing and you should be good to go.

Roadie

[Guest]

What's the water temperature below your boat? I'm sure it's gotta be cooler than the air temperature above.
Take a container with your distilled water in it and attach it to a rope and put it over the side, in the water.....the deeper you can get it, the cooler it'll get.
Then bring it up at night to fill your humidifier tank.
Naturally, you won't want to use any heat settings.....just passover humidification..

Good luck,

Den

[NomoreCrashcart]

I don't know where she is in south FL, but the water temp around Miami should be about 86 degrees right now, based on historical observations.

Not gonna help girlsaylor, I'm afraid.

http://www.nodc.noaa.gov/dsdt/cwtg/satl.html

[girlsaylor]

Hi friends,

OK, here goes - living just outside Miama, very hot, water temp is hot also.

Live on the sailboat; we don't have a home on land; too pricey for us to afford lodging here, to own or rent.

Roadie, I like the pump idea, but checking measurements, lockers not large enough to get one in, at least not that size.

We are at the dock these days, so have some power access. We don't have the wiring on the boat updated, however, so we run a separate power cord with just the A/C up to another outlet.

Rosemary, in order for you guys to help me, I don't mind you all knowing I have interstitial lung disease. And many of the diseases that accompany long-term steroids for treating it, like high blood pressure, high cholesterol. Then there's the arthritis, fibromyalgia, low thyroid, artificial hip, hiatal hernia, reflux disease, diverticulosis...the list grows yearly. Ugh. Oh, and don't forget the OSA and depression over all the medical problems, ha. But the depression's well-managed with meds, ditto for the low thyroid. Constant pain from the arthritis and fibro, but I'm pretty active despite all, restoring this boat, varnishing teak topsides, things like that. I rebuild winches, whatever needs done, as I learn new tasks.

I only use the humidifier in passover mode, as any humidity just makes my lungs fill up with more mucous than I'm already coughing up. But I keep the heated one I have in case I travel to visit relatives and need to turn on the heat.

I recently bought the smallest room size air conditioner I could fit into the available space in the line locker up forward. It will fit, but there's no way to deal with the condensation. No room for a pump, sadly. The next locker forward is oddly shaped. The next one further forward is earmarked for future water tanks, and the lockers are separated by structural fiberglass.

I purchase ice daily for the ice box onboard so we can have things like milk, produce, and such. But no way to freeze anything, and can't keep the icebox cold enough to keep anything as cold as a household refrigerator, with the very warm water temp heating up the hull in the water. We need to do some insulation in the ice box down the road. For now, have to make do.

Today I'm laying in front of two fans, underneath the single rooftop air conditioner. We've got canvas tents strung over the boom aft the mast, and a large spinnaker pole rigged forward of the mast, with canvas tents strung over it as well, to take the direct sun and heat load off the teak decks, which keeps them closer to the ambient outdoor temp, which is unfortunately 95 degrees today with very high humidity.

I don't have any family here to go stay with. We've moved so many times in recent years to try and keep DH working that it's been difficult to make friends, living a transient life. I'm trying, but it's not a quick process to settle into a community.

girlsaylor

[Slinky]

I'm afraid I don't have many suggestions that will help - except a bit of "fitting in" advice from one who changed schools 11 times in 13 years.

Whenever out and about, SMILE at everyone whose eyes you meet. After a while some faces will start to look familiar. Smile and say hi to those familiar faces and keep on about your business. Eventually others will smile and say hi back. And some even be the first to smile and say hi when they recognize you! Eventually you actually get past the smiles and his and make some really good friends from these simple starts.

(((hugs)))

[RosemaryB]

I don't have any other ideas about cooling, but perhaps, for the future, you could sail your boat to a cooler place for the summer months and spend the winter in Florida. I'm not a sailor, so don't know about the feasibility of this. However, your long term health is important if you are going to remain on the boat, so solving the problem so you can use your cpap successfully seems a key to it all.

Maybe using the internet to find ways to make at least part of your boat cooler economically would be helpful, too.

The other thing I have to add is about gluten sensitivity and interstitial lung disease. There appears to be a link and there are articles in the medical journals about it. Here's one, that mentions celiac from the journal Chest:

http://www.ncbi.nlm.nih.gov/sites/entre ... ds=6101248

Here's a page from a website called "The Gluten File." on lung disease and gluten sensitivity.

http://jccglutenfree.googlepages.com/as ... ungdisease

Current thinking is evolving toward the idea that celiac is only one manifestation of gluten sensitivity (GS), but since celiac is the most studied one, it's where you will find the most research. What prompted me to look up the lung disease is that there is also research associating the following conditions with gluten sensitivity: fibromyalgia, low thyroid, reflux disease, and (I think) diverticulosis. I, too, had a growing list of health problems that seemed to be associated with GS and after having an anti-gliadin antibody test come back positive, went on the gluten free diet. It's a lot of work, but at least you don't have to buy expensive meds. The gluten file website should have links to other resources as well. Plenty of people just try the diet as a way to see if they feel better once the gluten is gone. The book "Gluten Free Living for Dummies" is one my allergist recommended, as is "Dangerous Grains."

I hope this is helpful to you. Obviously, I'm not a doctor, but I've done a lot of reading on this for my own case. I'm amazed at how this food intolerance can impact so many systems in a person's body. Inflammation is part of the story, as are the antibodies that can build up toward one's one tissues, for example, anti-bone antibodies have been associated with it and osteoporosis at a young age.

[Goofproof]

Here is something on the order of a A/C you need.

http://www.samsclub.com/shopping/naviga ... tem=359849

The design vents the hot air in and out like a clothes dryer, and captures the water in a container inside the unit, you just dump it, almost your own water distiller.

The A/C unit you have, is it set up so it can cool the condensor with outside air and exhaust the heat outside of the boad, if not it won't cool, it's got to be able to breath.

This unit solves the problem with two flexiable hoses that go to the outside air. The problem is the unit like this is more $$$. Jim

[girlsaylor]

Wow, you guys are so kind.

Don't know where to begin, responding to the various ideas.

As the spouse is working here (we're not retired, nor independently wealthy, doggone!), we cannot relocate or follow the seasons at this time. but in retirement, you betcha we want to follow the seasons.

The gluten sensitivity idea is intriguing. I'm going to read more on that.

And Slinky, you speak like one who's been there done that as far as the relocating and putting down roots. I appreciate the encouragement on the 'fitting in'. You're right, of course. There's alot of wonderful people just waiting to be smiled at!

I am looking into flying up to visit my sis in VA for a couple of weeks, and enjoy some of her A/C as a side benefit. She's been urging me all summer to come for a visit, and seems like I should seriously consider it.

Thanks to all for your concern. I'll look closer at the links you've been providing here, see what we can come up with.

girlsaylor