Pulmonary Fibrosis News Forums Forums Welcome Lounge How has the use of supplemental oxygen effected your ability to perform once simple daily tasks?

  • How has the use of supplemental oxygen effected your ability to perform once simple daily tasks?

    Posted by Pulmonary Fibrosis News Moderator on April 19, 2018 at 6:02 am

    “It is so hard to get used to using supplemental oxygen. I still remember my shock and anger when told I would have to cart oxygen around whenever I moved about. I couldn’t believe it! I had a few choice words to say to my doctor about that.” Kim Fredrickson

    Do you use oxygen in the shower? What tips do you have for us to make it a little easier?

    Charlene Marshall replied 5 years, 12 months ago 4 Members · 8 Replies
  • 8 Replies
  • Joyce Douglas

    Member
    April 21, 2018 at 6:32 pm

    Hi Kim.  Yes. I do use supplemental oxygen 24/7 and at 2 l. setting. If I go walking I need to turn it up to 3l.  My main problem with the hose is that I keep getting it tangled up and had to keep untwisting it. However, one kind individual suggested that I find the joiners that swivel and that has made life so much easier. My oxygen provider had them in stock. I find the floor sweeping to be particularly annoying as the hose just ‘has’ to be where the pile of dust/dirt is.  Also the hose is getting caught on the strangest things.  I know I need to adjust my ways of doing things, but I unfortunately forget until -oops, too late, tangled up again.  Having a sense of humor is a good things.  Luckily I have a great portable unit – Inogen One and it has made life so much easier to cope and get around with. I have a 2 battery pack and that allows me 9 hrs on 2l. However, on 3l it is less, of course.  The freedom to move outdoors and out of our suite is wonderful.

    • Charlene Marshall

      Member
      April 23, 2018 at 10:26 am

      Hi Joyce,

      Do you have any good tips to help un-kink the oxygen hose? I have the swivel piece as well, although I don’t always use it. I still find at certain points of my O2 hose that it gets kinked (ie. off the spout attached to the POC) and then it feels as though the oxygen flow is reduced. Do you experience this as well? I just usually switch out my O2 hose when this happens, but I don’t want to be wasting them.

      Would be curious to hear your thoughts, as your POC is similar to mine although I know not the same.

      Thanks!
      Charlene.

  • Terry Moriarty

    Member
    April 24, 2018 at 5:25 pm

    I’ve been on oxygen since 20012. For about 6 months, I commuted on the subway carrying the small tank in a backpack. What a pain that was. I had the larger tanks delivered to my office. That was fun too getting the delivery guy through security. My client was very understanding.

    Then I got an Inogen 1 G2 and that was freedom. I got 4 batteries because I lived in California and worked in DC. I was flying all the time. I got the Inogen because it’s batteries lasted the longest and was the easiest to change on the plane. I went on cruises and could get a concentrator delivered to my room.

    oxygen never got in my way until now. In January, I went up to 7lpm. I don’t think there are any POCs that go that high. So I’m back to tanks if I want to go out. My high flow concentrator is really noisy.

    I got use to the cord pretty quick. I use 2 linked together with the swivel junction. I’ve never tripped on it. It does twist up sometimes, which is annoying. The worst is when it separates and I don’t realize it until I’m nearly passing out. Not good. Usually happens when the joiner gets caught on something, like the corner of my kitchen cupboard.

    Kinks don’t seem to impact airflow. I’ve caught it in my car door and the flow wasn’t impacted. The kink at the connection point to the POC didn’t cause any problems either.

    I really do miss my POC.  It mean’t freedom to me. Now it’s packed away in my garage.

    • Charlene Marshall

      Member
      April 24, 2018 at 9:25 pm

      Hi Terry,

      Great to hear from you, and thanks for contributing to this thread!

      I can imagine it would have been difficult using your tank on the subway, I also tried that once and it was quite difficult. I brought my POC to NYC and even navigating that through the public transit system with two friends at my side was difficult. I hope your workplace and client were both understanding about your need for supplemental oxygen.

      Do you use a large concentrator at home at all that is plugged in, with a long cord? I have a home-based concentrator and have always contemplated buying the 50ft+ cord but am afraid of tripping / getting tangled in it. Good to know you never really found it an issue. I find I get tangled in my short ones, but that might just be me being clumsy or moving too fast for my own good, which I do often 😉

      I’m really sorry to hear your oxygen needs increased and you can’t use your POC anymore. Tanks sure can feel like a pain, I understand that well unfortunately. Do you think you’ll ever be able to use your POC again, if your lungs get stronger and/or you can manage with a bit less oxygen? I know it doesn’t often work that our oxygen needs decrease, but just being hopeful for you.

      Take care Terry, and thanks again for writing!

      Warm regards,
      Charlene.

  • Terry Moriarty

    Member
    April 26, 2018 at 9:37 pm

    Yes, I have a concentrator at home.  I use two long hoses linked together with a swivel joint.  I think the long hose is safer because it’s almost always flat on the floor. I also have the freedom to move all around my 1500+ sq.ft. ranch-style house.  I can even get to the back of my minivan in the garage.  Sometimes the hose will get twisted up and I have to unravel it like yarn.  But it’s worth some minor inconvenience to have the freedom of movement.

    I was more worried about other people or my grandkids tripping on the hose snaking around the house, but so far, no falls.

  • Charlene Marshall

    Member
    April 27, 2018 at 11:58 am

    Hi Terry,

    Thanks for your reply 🙂

    I think I may consider doing this (linking two long hoses together) to navigate through my house as well. Do you have pets? I think one of the issues will be keeping my cat from playing with the tubing that is on the floor and moving around. I definitely agree with you, that these minimal issues that need correcting are worth it for the freedom to move around. Which sized cannulas do you put together with the swivel piece? Are they two 50ft lines, as an example? If so, does your oxygen provider give them to you? Sorry for all the questions!

    I look forward to hearing back from you at your convenience.

    Warmly,
    Charlene.

  • Terry Moriarty

    Member
    April 28, 2018 at 1:03 am

    I don’t have any pets. I’d love to have one, but I don’t think, in my current state, I can take care of one.

    I think my hoses are 50′, but I’m not sure. The cannula is 7′.

    I can’t remember how I got the hoses. Every time I got a concentrator delivered to my hotel room ( I traveled a lot), they always left a long hose. Call your oxygen provider. However, mine would probably say no.

    • Charlene Marshall

      Member
      April 28, 2018 at 4:03 pm

      Thanks so much for your reply Terry, this is all good information for me to know!

      I can’t imagine the freedom around the house that 100ft would give me. I am definitely going to try this for days that I spend at home, and could just leave myself “hooked up” to the concentrator on the main floor. I suspect my silly cat will try and chase the hoses as they move around, but I can see what she does and modify as needed.

      I’ll give my oxygen supplier a call to see if they can provide longer hoses for me when they are by to swap out my tanks – I still use a combination between a stationary concentrator, a portable one and various sized tanks depending on what I am doing. I’m sure I could order some longer ones online as well, but if I don’t have to pay for them then that is even better! Thanks again for sharing and I hope you are enjoying your weekend.

      Warm regards,
      Charlene.

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