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 The most frustrating thing in the world..
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Jan-KS
Member

USA
105 Posts

Posted - Jan 20 2019 :  10:13:59 PM  Show Profile  Reply with Quote
Do any of you have problems with your oxygen hoses getting caught on just about everything? Especially at the place where the two hoses connect. The white connecter gets stuck under legs of furniture and the worst place is under the refrigerator - right on the corner. I keep telling myself to get some packing tape and just tape around the corner of the refrigerator. On my recliner there is an arm to pull the recliner down. I never recline in it (not enough floor space so I might as well tape that up as well (if I can do it so it's not noticeable
Has anybody come across connectors that arent so much bigger than the tubing itself and it might not happen as frequently.

Also my provider has started to use a lighter color green hose that is the proper length but not the appropriate thickness - I am constantly checking for places where it ha kinked up and reduce the air coming out of the end of the tube. I set mine on "3" but there are many days I don't feel like I'm even getting level "1" due to all the tubing kinks

Jan C

tsainta
Contributing Member

USA
1875 Posts

Posted - Jan 21 2019 :  12:34:01 AM  Show Profile  Reply with Quote
It's a pain. I haven't solved it, except to be constantly aware and when I walk around I pull the hose with me grasping it beyond where the cannula connects to the longer hose. That way the connector never gets caught.

Tony-CA

Life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.
--Andy Rooney
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Diane545
Member

USA
318 Posts

Posted - Jan 21 2019 :  08:54:06 AM  Show Profile  Reply with Quote
I have same problem. I have been out breath and find out I am not connected or kink in hose. Kinks are my biggest problem and reeling in hose. I have be careful not to trip on hose. It seems somebody could engineer a system or hose that doesn't kink and retracts.
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muddleaged
Member

USA
62 Posts

Posted - Jan 21 2019 :  10:39:10 AM  Show Profile  Reply with Quote
My hose kept hooking on the leg of the washer. Solved the problem by cutting the corner off a detergent bottle and slipping it under the foot of the washer. There is a picture at: https://www.copdfoundation.org/Portals/0/Users/045/81/27181/IMG_8763.jpg?ver=2018-12-12-084002-980. (I couldn't figure out if I could post a picture here or how to do it.)

I'm also much happier with a 4 foot cannula, since the connector is not at the floor. With the 7 foot cannula, I kept snagging on chair legs.

Another person I read said if you need lots of hose, never use two 25-foot hoses connected. Get a 50 foot one - no connector.

Good luck!
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SEW4no
Member

209 Posts

Posted - Jan 21 2019 :  10:59:10 AM  Show Profile  Reply with Quote
Other hints. Get pipe insulation tubing (different widths) that is slit horizontally and cut off piece (1-2") to wrap around wheel or foot of refrigerator.
Tell your provider to give you the crush proof tubing (it has 3 lines inside the tubing.) If they refuse, you can order it online. This helps with everyday kinking but also read below about gathering your tubing to help prevent kinks.
Get the Salter swivel connectors - 5 in a box on amazon they are far superior to what DME people provide.
I use two 25 ft. tubing with swivel in-between. I use an Oxymizer and it has 7 ft of tubing so I put another swivel there as well.
Tubing starts to kink when you keep curling it up in the same direction...reverse direction ie counterclockwise for awhile to see if that helps. If you are always gathering it in tight loops, the tubing is bending at the same parts of the tubing. Eventually it starts kinking in the same location on the tubing. Make larger loops when holding it in your hand. Loosely stretch out the tubing, note the direction of the curls, hold onto your swivel connector at the upper portion and then rotate the lower portion to flip the tubing in the reverse direction until it almost completely in a straight line. Hope this helps.
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PennyPA
Contributing Member

USA
5905 Posts

Posted - Jan 23 2019 :  4:38:17 PM  Show Profile  Reply with Quote
SEW4no and muddleaged, those are great suggestions! I wish those answers had been around when I was on O2 24/7. And that cut job is perfect, muddleaged. Another recommendation re:house length...don't get a 50' hose. As SEW4no said, use 2 25' houses with a swivel in the middle. And place an additional swivel between your cannula and the hoses.

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SEW4no
Member

209 Posts

Posted - Jan 24 2019 :  11:06:27 AM  Show Profile  Reply with Quote
Thanks for the picture muddleaged - great idea!!
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Jan-KS
Member

USA
105 Posts

Posted - Jan 26 2019 :  12:56:42 AM  Show Profile  Reply with Quote
Thank you so much for all the suggestions. I'm going to try the plastic corner solution as soon as I have a good bottle. Heck, the next Styrofoam container from take-out might work for a little while. I wondered if the tubing I've received the last couple of times wasn't an inferior grade because while I've always had problems with the hose getting caught on something this stuff bends at a right angle and nearly cuts off the air supply - I've never had that happen before. I don't mind paying for my own supplies but it's frustrating when you know your provider is making a bundle off of equipment and they start cheaping out on other stuff - then they bring me a ton of stuff I don't need or want. Thanks again

- Oh one of my funniest problems has become a ritual first thing in the morning. Usually the dog stands by the back door at the other end of the house and gives a bark or too to let me know she needs outside. That immediately alerts the cat (imbedded in my stomach or between my legs) to jump out of bed so I can get up. As I wander down the hallway I am suddenly stopped dead in my tracks by my cat holding one paw on the hose. Same place EVERY day like clockwork - who said cats don't have a sense of humor? I'm always surprised that she's strong enough to hold down the hose so that it actually stops me. (Actually I have another problem with her is that occasionally she likes to take bites out of various locations on the hose - she never could do that with the heavier hoses I used to get)

Jan C
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muddleaged
Member

USA
62 Posts

Posted - Feb 05 2019 :  8:03:02 PM  Show Profile  Reply with Quote
Thanks for your comments. I can see some uses here for the pipe insulation!

Regarding hoses, I kept ordering new hoses because I kept standing on them. . . when I mentioned that to the supplier, they sent green Salter hoses. They are a bit stiffer, perhaps a bit heavier, easier to see on the floor, and I just changed one (Feb 5) that I had put on on December 12. So these green things are lasting much longer. (I had been going through one a week!)

Regarding the recliner arm, I have a couple of thoughts. Pin (velcro?) a flap of fabric to cover the arm? Remove the arm completely? Tuck fabric or a pillow or even a towel (longer than the arm) between the chair and the arm?
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SEW4no
Member

209 Posts

Posted - Feb 06 2019 :  8:59:50 PM  Show Profile  Reply with Quote
Re, recliner arm....what you want basically (just a thought...) is something at the top of the handle to prevent the tubing getting from the top down into that long space. First thing I though of was to stuff a long stock stuffed with a roll of cloth toweling and slip it onto the handle. You may have to play with thickness and length to see how it would work. Then slip a rubber band down toward the bottle to ease it off when the sock needs to be washed. Think of all the pretty socks you could get - great conversation giggle..:)
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Jan-KS
Member

USA
105 Posts

Posted - Apr 13 2019 :  10:23:03 AM  Show Profile  Reply with Quote
I have the supposed "new" salter hoses and they are very definitely made of a thinner green plastic - they kink constantly. The clear ones are working fine except when used with a tank and then they pinch themselves off where they attach to the metal. The connectors will forever be impossible.

One thing I found out after I wrote this is that you just learn to manage kinks - I just automatically go a different way for some projects. Oh - and tell my dog to "lift her leg" now "lift the other leg" because the hoses constantly get wrapped around her legs. My cat just jumps out but a Basset Hound doesn't jump much of anywhere. Thanks for the ideas.

I thought there was a way to prove how much O2 is making to the other end. I'm supposed to be set on "2" which keeps me at 91-92% and constantly craving oxygen. When I set it on "3" I'm at 98% and feel fine. Is there something physically WRONG with being over oxygenated? They seem to act as if the bare minimum is good enough. Of course, that's at rest. On a level 2 setting - if I start moving around I'm in the 80's. My pulmonologist doesn't see any big deal about this - but how many magazine articles have I read where they stated that a higher oxygenation is better for you?

Any way - my point is - how much leakage are we getting on the newer green hoses. If it's set at "2" at the beginning - I expect it to be coming out at a level "2" at the end of the tubing. I'm starting to think nobody really cares - I have a death sentence hanging over me - what the he** difference does it make to my doctors. Even the Palliative care doctors would rather give me more anti anxiety medicine and morphine than deal with the actual problem - virtually NO air is coming out the other end of the tube!!!

Jan C
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tsainta
Contributing Member

USA
1875 Posts

Posted - Apr 13 2019 :  1:44:11 PM  Show Profile  Reply with Quote
Jan,

I'm 79 years old and I've been on oxygen for 13 years, the last ten 24/7. I've had multiple bouts with pneumonia and a life-threatening hematoma that kept me in the hospital for two weeks followed by two week in a rehab facility, but I attribute my survival to exercise and being generous with my oxygen. I understand that certain COPDers can retain CO2 and that problem can be worsened by high levels of oxygen, but I have also read veteran clinicians who are not sure they have ever personally encountered a true CO2 retainer.

I keep my oxygen levels at 96-98% and have for years.

Tony-CA

Life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.
--Andy Rooney

Edited by - tsainta on Apr 13 2019 1:46:23 PM
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jmrommes
Contributing Member

1991 Posts

Posted - Apr 13 2019 :  2:12:25 PM  Show Profile  Reply with Quote
This is another case where the old "hypoxic drive" theory rears its ugly head. The theory has been debunked for about 20 years, but there are a whole bunch of folks who swear by it still. I've never heard a clinician describe a death that they contributed to the "hypoxic drive" theory that didn't occur in the ER when the patient came in respiratory failure. They were given massive doses of O2 in the ambulance and the patient died, presumably because they "lost the will to breathe". An alternative explanation (and one apparently supported by evidence and autopsy results) is that had they initiated CO2 reducing treatments instead of massive O2, the patient might have lived.

The problem with the hypoxic drive theory is that because of what's been seen in hospitals, anyone whose CO2 levels are elevated when hospitalized gets told to keep their O2 LPM at 2 and never raise it. As Jan points out, this keeps her at 90 - 92 and she's a lot more comfortable at 3 LPM. As most people's O2 saturation levels drop when they exert themselves, at 2LPM, many people are courting right heart and brain damage, neither of which they want.


Docs who've kept up with the literature and have watched this discussion unfold over the years are much more likely to take a different approach and tell people to raise their O2 flow levels when they're exerting themselves. My doc has prescribed my O2 to keep my saturation levels between 92 and 97 at all times by adjusting my O2 source accordingly. I use my oximeter and titrate my O2 as I need it. Like Jan, I'm much more comfortable at 95 and up.

Bottom line, I believe that keeping my O2 levels where I'm comfortable is best, and even when my O2 sats are at 98 or 99, I still feel like breathing!
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Dave-OH
Administrator

USA
4237 Posts

Posted - Apr 13 2019 :  11:51:22 PM  Show Profile  Reply with Quote
My two pulmonologists (who are buddies) can not agree if I need O2 at night. I have a device, a biostrap, that tracks my O2 at night. I stopped using O2 at night and only show short blips when my O2 is low, usually about 88.

But I have develop my own rule on O2 at night and exercise. Although my Rx at night is 1 liter, I find if I am using it, turn it up. I use it if my resting O2 at bed is below 92, or my resting heart rate is higher than I like. I have talked it over with the staff at pulmonary rehab and they agree.

I am nit fond of the feel in my nose, but I sleep well and wake up refreshed. In rehab, I turn up the O2 to get the best results. The staff knows it and my doctors know it.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info


My Site: http://lungresources.com
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Sandy9s
Member

USA
472 Posts

Posted - Apr 27 2019 :  9:26:36 PM  Show Profile  Reply with Quote
I buy my hoses and connectors from www.myoxygen.net. They are soft hoses and I never seem to get any kinks. I use a 2' cannula (change it about every 2-3 weeks), then connector; then 7' hose; then connector; then 25' hose; then connector; then 7' hose. I buy everything from the same supplier and I only change all of the hoses 2 times a year. (so far have changed only once since I've only been 24/7 for about 1 year). These soft hoses must be working because of no kinks unless my chair is actually sitting on top of the hose for an extended period of time and I don't notice.

I'm at 2-1/2L while resting -- go up to 4L while messing with anything else..like cooking or something.

At rehab, the guy turns me up to 4L on just the treadmill; otherwise he keeps me at about 2. They check sats after each machine -- I think I should be at 4L all the time! He will turn it up if I were to ask him, I think.

I have carpeting throughout the entire house except in a tiny kitchen and the bathroom. I wonder if that makes the difference why I don't get kinks when we stand on or walk on my hoses. We both seem to want to step on the hose because then we know exactly where it is. It certainly doesn't do anything to the hoses I purchase.


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Jan-KS
Member

USA
105 Posts

Posted - May 15 2019 :  05:39:00 AM  Show Profile  Reply with Quote
I solved two of my challenges - the tubing getting caught under the refrigerator and the tubing being caught in the recliner arm (I never use it to recline).

I took clear packing tape and taped off the corner of the refrigerator and the top of the recliner arm. It's not even noticeable. Now my struggle is with various connectors constantly becoming undone. My cat literally saved my life when I was not able to breathe but couldn't think clearly enough to follow the hose to fine where it detached. I found it quickly because the cat was playing with the side where all the air comes out of it - so I knew where the disconnect is. I'm sure that wasn't her intention but it did save me from a 911 call because my sat's go down to the 60's when off O2 and with any kind of exertion such as walking - I was at a point where I couldn't think clearly. The disconnect was likely my own fault when I tugged too hard on the hose to unkink it (again, BAD green tubing from my supplier/salter).

Jan C
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