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    • #20387

      Many patients diagnosed with idiopathic pulmonary fibrosis (IPF) end up requiring supplemental oxygen as their disease progresses. Sometimes it can take years before a patient with IPF is dependent on oxygen, and other times, the progression can happen quickly. Unfortunately, the latter was true for me. I was diagnosed with IPF in early 2016 and was set up with home oxygen by June of that same year. Thankfully, I am still not dependent on it entirely, but always wear it at night and in extreme temperatures (hot/cold).

      Recently, I came across a discussion on another social media platform about oxygen cannulas and how often patients are supposed to change them. I couldn’t believe how varied the responses to this question were! I tried to recall if I had this discussion with my oxygen provider, and don’t believe I did so I’d be curious to hear from others regarding this.

      How often do you change/replace your oxygen cannula if you use 02 regularly?

       

      What made you decide on this frequency, was it a discussion with your doctor, oxygen supplier or just something you’ve started doing?

       

      I look forward to reading your thoughts.

    • #20393
      Cynthia
      Participant

      My provider told me to replace mine every two weeks. They supply me with enough to cover that frequency. I suspect that every two weeks is all Medicare will pay for.

      • #20457

        Hi Cynthia,

        Hope you’re doing as well as possible, thanks for writing! I’d heard between 10-14 days (2 weeks being the latter of that of course) as well, although other people have shared it can be even longer than that. I typically get enough from my provider to change my cannulas regularly, and have a back up “stock” I just purchase off Amazon just in case. I wonder if there is any real protocol for this? Thanks for sharing, really just curious to hear what everyone else does as sometimes I think I change mine out too often!

        Talk to you soon,
        Charlene.

    • #20405
      Ruth Edwards
      Participant

      Usually the 7ft part, every 2 – 3 weeks…or when it starts to irritate the skin on my cheeks…that seems to be a sign to change.  The 50 ft. part about every 2 – 3 months..probably should be sooner.  I’m trying out different kinds.  One that said it didn’t tangle/knot up so quickly.

      • #20458

        Hi Ruth,

        Thanks for sharing this! When it irritates the skin on your cheeks, that is a good indicator of change and thanks for sharing that its usually between 2-3 weeks. Regarding the tangling/knots, have you tried the swivle device (I think that is what it’s called) that you can attach to the cannula to prevent it from tangling up? If you know what I mean, let me know but if you want me to try and find a picture of it I can do that too! It is a little device on Amazon 🙂

        Cheers,
        Charlene.

    • #20413
      Cynthia
      Participant

      Btw, do you clean your cannula? When I’m out and about it sometimes touches surfaces that might be a little iffy. I’d like to use wipes on them but don’t the wipes have alcohol in them? Wouldn’t that pose a danger?

    • #20426
      Rene Hakkenberg
      Participant

      I don’t know if you believe in Dr. Google but he says:  “wash mask in warm, soapy water and then rinse it thoroughly with a solution of 10 parts water and one part vinegar. (Vinegar will kill any bacteria, but will not affect the plastic tubing.) Finally, rinse well with hot water and hang it to dry.”

      • This reply was modified 8 months, 2 weeks ago by Charlene Marshall. Reason: formatting
      • #20462

        Good question @cynthia-comery-ferguson, and thank you for replying @renehakkenberg!

        I used to be a little more “lax” in cleaning my oxygen cannula, and I’d have no issue with wiping it down with a lysol or other type of antibacterial wipe… that was until my transplant coordinator freaked me out with how “combustable” our cannulas could be. This conversation came from my using Vaseline in my nose to try and soothe my irritated nostrils but based on what that is made of, my coordinator said that is a big no because it could be flammable. Since then, I try and only use a natural-based soap and warm water to clean my cannulas and if I can’t clean it to my satisfaction, I just throw it out and replace. Sometimes I don’t even use the soap just in case! I also don’t know if the chemicals in the anti-bacterial wipes might erode the plastic of the cannula? Just some thoughts I had but certainly can’t say for sure. Rinsing with vinegar seems to make sense Rene, although I’d worry about the intense smell of it afterwards I’d think? I’m pretty sensitive to smells though, so it may not bother others 🙂

        If you find out any further information, do feel free to circle back and share!

        Kind regards,
        Charlene.

    • #20438

      I am on oxygen 24/7. I use a home concentrator, an eclipse 5 & bottles of O2. I change mine every week or 2. My supplier will give me as many as I want. I change each one as they get dirty quickly. I’m constantly playing with it as I can’t  seem to find one that fits me right. The best for me is the Salter Lab super soft. The nose pieces are either too long too short or too far apart. I’m adjusting them constantly to stay in place.

    • #20464

      Hi Karen,

      Thanks for sharing your experience with the Salter Lab cannulas and how often you clean them. It sounds like the general consensus is every couple of weeks 🙂

      In terms of the cannula staying in place, have you ever tried to put it on “backwards”? This is a weird question to ask I know, but some people swear by it if they are always adjusting their cannula. What I mean by this is, if you put the cannula in and do up the adjusting tab behind you (mine tightens up under my hair) then it tends to fit quite a bit more snug around my face and I find I rarely have to adjust it this way because the adjustment piece stays in place as I am not pulling on it since the “hose” part of the cannula hangs behind me. Let me know if you need more clarification, but this might be something for you to try out.

      Talk soon,
      Charlene.

    • #20478
      Warren
      Participant

      Great question.  I am on high volume (4 to 7 L/min) oxygen 24/7.  I change my cannula at 4 weeks.  I would prefer to change my cannula every 1 to 2 weeks but don’t because it takes so much time an oxygen to purge the cannula of residual ethylene oxide and ethylene chlorohydrin that burn my nose for days and that would otherwise end up in my already highly compromised lungs.  Besides residual sterilizing agent I believe based upon my previous work background but without any supporting laboratory data, there may be residual plasticizers as well.  FDA is actively working on reducing the levels of residual chemical or developing novel processes for sterilization. I purge 7 ft cannulas using the oxygen outlet on my liquid oxygen supply vessel.  I purge it for days at 1 to 1.5 L/min.

      • #20491
        Mark Koziol
        Keymaster

        Hello Warren, thank you for commenting. We appreciate your vast knowledge of science. If possible can you get a new cannula and oxygen tubing every week or two so you wouldn’t have to clean your oxygen tubing. When I was on supplemental oxygen, the company would provide tubing and cannulas at my request. Thank you again for participating in this forum. Mark.

      • #20835
        Jane McBride
        Participant

        Thanks for the tip of wearing the cannula at the back. It has really given my ears a rest and doesn’t dangle down the front getting in the way of everything.  I wear it 24/7 and this suggestion was really a relief. Plan to  rig some kind of easy belt to help with walking around doing housework, etc.

        Am going to experiment with the cannula on my Inogen today. I usually tuck the excess tubing into the straps on the backpack anyway, so I look forward to it working very well.

        As to cleaning, I change the soft cannula (much less irritating than the stiffer ones) as needed and keep an eye on the lengthy tubing again as needed or by instinct. Seems to work well.  Change my Inogen cannula on the same look-it-over and change by instinct as well. Haven’t run into any problems, although I must confess to being a bit of a stickler with hygiene.

         

         

        • #20838

          Hi Jane,

          So glad the tip for wearing the cannula at the back was helpful for you! It just takes a bit of time getting used to, doesn’t it? I like it because like you say it gives your ears a rest, plus I find it fits more snug to my face without as many adjustments. Glad it was a relief for you 🙂

          Did the backpack you use with the Inogen come with it? I use the SimplyGo machine by Respironics, and don’t have a backpack option, however, I’d like to find a good one for my D sized tanks. It hasn’t been super easy to find a good one and my 02 provider says these are “first come, first serve” which means they are snatched off the shelves by those who use oxygen as soon as they come in. Apparently the amount they get in are also limited. Thanks in advance for writing, and glad to hear the tip was helpful!
          Charlene.

    • #20483
      Robert Carlson
      Participant

      Charlene,

      I don’t keep track of how often I change my cannula, but it is not very often, maybe 6-12 months.  I try to wash the terminal end at least weekly, or when it has been on the floor.  The soft (flexible) portion of the cannula stiffens with use (oxygen probably causes it) when it gets too stiff I replace it.  Otherwise, I see no reason to replace it.  I find that providers recommend whatever insurance or Medicare will pay for.

      • #20490

        Hi Robert,

        Thanks so much for getting in touch with us to discuss this topic! Your experience just shows how much variation there is among patients and the frequency of changing their cannula. Perhaps there isn’t a right/wrong answer, and it is on an “as needed” basis or as providers/insurance will cover? Thanks for sharing. How do you clean your cannula when you do, is it just with soap and water? Folks seem curious about this as well.

        Thanks,
        Charlene.

    • #20499

      Charlene, thank you so much for the tip on wearing the cannula backwards. This is fantastic. It holds it in place and keeps my hands off it. I just need to get used to it. Thanks again. Your topics are always so helpful. This disease is no fun, but if we face it together and help each other deal with our problems it makes each day A bit easier. I’m a fighter and thankful for every breath.

    • #20512

      Hi Karen,

      Oh, thank you so much for your kind words and I am really glad to hear the cannula is suiting you better wearing it backwards! It does take some time to get used to having the hose part behind you, but I find it fits “snugger” on my face, requiring less adjustments to it in the end. So happy this worked out for you. Keep fighting and know that your forums community is always here, standing by to support you 🙂

      Charlene.

    • #20519
      Carmela Vasta
      Participant

      Hi Charlene,

      Good topic, I am interested in what others say and shared information is what keeps all of us going.

      I’m on oxygen 24/7. Cannulas are impossibly uncomfortable. My provider over the 3 years has given me several different ones to try. West Med adult super soft is the most comfortable for me. They are available on Amazon if the provider doesn’t have any.

      For nose irritation, my provider told me that KY jelly is the only safe lotion to ease the irritation and it does soothe; I’ve used it since 2016. Vaseline and any glycerin product is unsafe. I clean the cannula with water. I too am smell sensitive and dislike inhaling bleach, strong detergents, etc.

      I wear the cannula 24/7 and change it every 7-10 days, but it really depends how it feels and what activities I’ve done.

      I have tried, but I cannot wear the cannula backwards. I’ll work at it.

      Thank goodness for these sites; we learn and benefit so much from each other. Thank you again Charlene for all you do to keep us going!

      Regards, Carmela

      • #20527

        Hi Carmela,

        Thanks so much for writing and sharing your thoughts on this topic! I am pleased with how many folks replied and shared their story/experience with cleaning their 02 cannulas. I sure agree with you, shared information and knowing others truly understand what its like to live with this disease brings me a lot of comfort. Though, I certainly wish none of us had to deal with it! I’m glad you’ve found a cannula that is as comfort as possible for you, as I know some irritation certainly still exists. Thanks for sharing, and I hope you continue to keep us updated on how you’re doing 🙂

        Sincerely,
        Charlene.

    • #20522
      Robert Carlson
      Participant

      Charlene,

      You asked me how I clean my cannula.  I only clean the terminal end, and do this using warm soapy water.  With some water in the sink basin I immerse the end of the cannula and clean the outside with my fingers.  With the end of the cannula underwater, I quickly squeeze it repeatedly forcing soapy water to cleanse the inside (but just the end, not the tube itself).  I then take a Q-Tip, strip off some of the cotton so it will fit the nostril tips, and clean the inside of the tips.  I then kind of repeat the process using clear water to remove any soap residue.  Shake any remaining water from the end, if a little water remains, no problem.  The whole process takes me less than (2) minutes.  I think it a good idea for a person to clean the cannula daily, or do a weeks supply at a time.

    • #20526

      Hi Robert,

      Thanks so much for getting back to me so quickly regarding cleaning your cannula. Sounds like a simple, but important way to clean it and I really like the idea of using a Q-tip with the excess cotton removed. I am going to do that today! Thanks for sharing, I appreciate this update/tip!

      Enjoy your day.
      Charlene.

    • #20787
      Rayna
      Participant

      Aquaphor is water based. It has the consistency of vaseline and no odor. That’s what we use.

      I use alcohol wipes when we r out and about if i forget to bring a backup. The alcohol evaporates in seconds.

      I replace the cannula whenever it gets dirty, at least once each week, sometimes more often like if my son sneezes and doesn’t lift it up in time.

      My medical supply company has an order for 8 or 9 per month, but I seem to be able to get as many as we need whenever we need it. I never counted, but they send us a box full of them.

    • #20805

      Hi Rayna,

      Thank you so much for writing and sharing the tip about what you use to clean the cannulas for your son. I am sure others will benefit from this, as have I 🙂

      Your son doesn’t mind the strong smell of the alcohol on the nasal cannula? I’ve thought about using alcohol wipes too but then worry about inhaling that strong smell of the cleaner. Really glad the provider gives you ample cannulas, to change as you see fit. Hope your son is doing as well as possible.

      Kind regards,
      Charlene.

    • #20820
      Chuck Harrison
      Participant

      Hi Charlene ,

      always happy to read your blog . How have you been ?

      Lim not to bad . As far as changing cannulas , about a year ago I came across a super deal on super soft cannulas ( 150) in a case on eBay , very soft ! As far a changing them , when the cannula starts to feel stiff that’s when I change it . When I first started the Vna that used to supply them were very stiff ( I thought that was the norm ) and I was miserable! My nose would break out in sores behind my ears were getting sore and that is what made start hunting around for a different cannula , to be honest I forget the cost . But on average 3-4  weeks .

      wishing well  ,

      chuck

       

    • #20830

      Hello my friend Chuck – so nice to hear from you! I think of you often and hope you’re keeping as well as possible. Thanks for writing.

      I’m doing okay thanks, gearing up for a very busy September which includes my travel plans to Hawaii. Just hoping my lungs remain healthy enough to go, so I am trying to take it easy between now and then, although that isn’t going so well so far. I’ve been spending quality time with friends and family, working as much as I can physically and writing for the forums. That about sums things up for me. How are things there?

      Thanks for sharing the tips on the cannulas and where you got them for such a deal. No doubt that will benefit others, and waiting to change them until they stiffen makes sense too. Thanks for sharing your experiences with us Chuck. Thinking of you 🙂

      Charlene.

    • #20839
      John Kane
      Participant

      Charlene, I also use the Respironics Simply Go concentrator. It did not come with a backpack, just the shoulder bag. I did find, and buy a back pack for this unit, by Philips, on Amazon. My med supplier needed to order this, but I got it through Prime in 2 days. And less expensively.

       

    • #20840

      Hi John,

      Oh thank you so much – this information is so helpful! I am going to check out the backpack option now for my POC on Amazon and note it down so I can share it with my oxygen supplier next time they are here. Thank you so much, what a great option to be aware of.

      Charlene.

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