Oxygen Question

[Laurie]

Hello,
I recently had a decline in my CF and was hospitalized and was put on oxygen 24/7. I am now able to take it off for a few hours during the day only if I am sitting down. I am struggling because it drys out my nose and makes it bleed and it hurts. Do you have any suggestions? I flush it out with saline and I also use Flonase nasal spray to help with the inflamation.

My next question is what kind of oxygen equip. are you using? I have a concentrator with a long air line that I use at home and then tanks with a backback to go out in public but I do not like the small tanks because they put a conserving device on it that makes sniffing spraying sound everytime I breathe, it is uncomfortable and it is loud. My husband says that he has seen people in public with what looks like small portable concentrators, does anyone know about this? I would like to get one because then I would not have to worry about the sniffing sound or a tank running out. Seems like someone could invent an easier way to be on oxygen that wasn't so intrusive. Any ideas?

 

[JustDucky]

Hi Laurie, do you use a humidifier with your oxygen? When I was on O2, I had a bubble humidifier that went on where your hose would plug in, you fill it with sterile water and there would be an attatchment for your oxygen tubing. That did help me as far as nasal drying. Ask your oxygen provider about it and then get a prescription from your doc. I also used a product called Ayr gel made specifically for people who were on CPAP or oxygen, it is saline based and you just put it in your nares. Prior to being vented, I was on a pretty high setting so drying of the nostrils was a problem.
As far as other systems, there are liquid oxygen systems as well as something called Helios. It is relatively small, you fill it from a resivoir that the oxygen company provides. One filling with a setting on 2 liters is supposed to last in the neighborhood of 8 hours. I was on the regular compressed gas O2 with the conserving device, yep, it sure did hiss alot, but it worked for me. I was self conscious about it at first, but after awhile, it became a part of me and I didn't notice it.
There are portable oxygen concentrators, but most insurance companies do not cover it yet as far as I know, most folks use it when they travel if they purchase it. Planes now accept portable concentrators inflight if you have one. As many people with oxygen who have travel know, it does cost money as the airline does not allow you to take your own oxygen on board, you need to purchase theirs.
I hope I have helped, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Laurie]

Jenn,
Thanks for replying, I tried the sterile water humidifier but water started to bubble through the line and into my nose. Lincaire (the oxygen company) said that happens when the line is cold and there was nothing that could be done so I had to disconnect the humdifier. I will check into Helios, maybe it would be lighter to carry than the tanks? I will also try the nasal gel, thanks for the tips!!

 

[JustDucky]

I used to have a water trap on mine to collect the condensation, did they give that to you? I know that helped tremendously.....it prevented the water from going up past the trap and into my nose. Also, if you can't find Ayr gel, believe it or not, plain ol' KY jelly works, it is also water soluble! Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[luke]

Laurie,

You can actually help the water in the O2 line. You can do 3 things; first Lincare can put a water trap on your line to catch the water. Second make sure you weren't over filling your humidifier. Third is more outside the box, if you "drape" your cannula on your furniture (IE couch, chair, etc..) it should prevent condensation, many times the temperature difference from the floor to you will cause water in your line.

As for portable O2, helios is a good option, the only bad thing is the O2 reservoir for it is around 4 feet tall and 3 feet around so you have to have room for it. Another "new" portable option would be composite tanks rather than aluminum. They way less and hold more O2. Your home care company will resist this one though because they cost more and they aren't allowed to pass the cost on to you.

Good luck....



Luke

 

[beautifulsoul]

I am on oxygen too. the company I use is called pro2. they give me a big metal tank with oxygen. and a small gray one for when i go places. all i have to do is conect the small gray one to the big metal one and fill it up with oxygen.it lasts for about 6 hours. then I have to refill it again.

 

[anonymous]

I had a horrible time when I started on O2. The humidifier helps lots and you do eventually get used to the flo in you nose. It took a few months for me it was quite hard. Good luck!

C

 

[JazzysMom]

I have a "converter" (for lack of better words) which takes the air from the room & reuses it to make the O2......it is fairly loud like a compressor. Thankfully I havent needed it much at night because hubby cant sleep with it on. I also have a HUGE O2 tank that holds 12 hours of O2 should the other thing break down.

 

[anonymous]

My husband was on O2 for 2 1/2 years 24/7 - consistently getting water in your tubing using a concentrator isn't normal - it maybe happened three times for us (he used a concentrator at work and at home). Once, the sterile water was too high, or the lid wasn't on quite right, and the other two times were the 'condensation,' which we just blew out. Your oxygen company should help you with this problem. Call back and maybe you will get someone more knowledgeable - insist on it! Geez, being on O2 is hard enough without the equipment not working right! There are several options for portable oxygen -- again, your company should inform you of all their units. I think they are not used to doing that, because most of their customers are older and house bound. It was frustrating for us to encounter a problem (not being able to go anywhere for more than a couple of hours because we would run out; then we requested another portable unit so we could take two; then when I requested a third, because we couldn't even make it back and forth to the dr's without running out, they said, oh, would you like our 'little buddy' unit that sits on the car seat - uh, duh, ya think???? It held about 20 liters and connected to our portables just like the two larger tanks we kept in the garage. It made our life MUCH easier. So, you might want to inquire just what kind of equipment is available, if you haven't asked them yet.) Our company was Apria, I know they are fairly nation wide, and we were thrilled with them (other than them not letting us know about all their different types of equipment - I wish I had thought to ask right from the beginning.) We purchased nasal saline for some dryness, but I think he only used it once. Oh, he ran the O2 line up his shirt, and carried his portable in back packs that we purchased at like, Walmart. It sounded like your company provided them - which would be great! The units never ever made any noise (although if tipped they would freeze up). They called them stroller units. They filled at the top on the side (We had a tan one and a dark blue one).

I wish you much good health.

Take care,
jan
wife of Greg (46 cf'er w/cepacia tx'd 10-31-05)
www.standinginthegap4greg.org

 

[cfgirl38]

I am on O2. I have a concentrator and a small tank called a spirit. Melissa have you tried putting the concentrator in another room? That's what I do. I have a 50ft O2 hose.
The spirit tank has a continuouse flow on it. So when I'm somewhere where it's quiet I can put it on that setting as to not be as noticeable. People look at you anyway because they can't believe a younger person would be on oxygen. I don't think its from the noise that it makes.
I use Apria too. They are great. I have actually broke the knob that attaches to the air hose 2x in the same week and they exchanged the tank free of charge. I used "the buddy" when I went on vacation camping, we also used one when we took a road trip to North Carolina. They last along tiime.

 

[JazzysMom]

I also use Apria.....no I didnt put the concentrator in another room. At the moment I am ok so I wont worry about it, but should I start needing it again I definitely will. They also gave me a 50' hose for mobility. Thanks for your input!!

 

[anonymous]

Holly has a huge tank downstairs, a concentrator and portable tanks for when we are on the go. She used to get nose bleeds all the time, they finally gave her a new concentrator and she hasn't had any problems. Prior to that we did the water bottle hooked up to the tanks and we actually found mold growing before time to clean it so we stopped doing it. CFMAMA