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    • #20941
      Colleen Steele
      Keymaster

      Other than the occasional discomfort and inconvenience of using supplemental oxygen my son never experienced significant complications from it’s use.

      I’ve learned recently that some people experience more problematic symptoms from frequent use of oxygen. For example, a forum member recently shared that the force of air over time has caused huge holes in her nose. I have heard of people developing sores in the nose but not actual holes. I was wondering if there are others who have experienced this?

      The link to the column below mentions that in extreme cases some people may develop lung damage or a condition known as pulmonary oxygen toxicity. It can also cause damage to the eyes. I’m not familiar with these symptoms or have known anyone who has experienced them. If you have, please share with the forum.

      https://www.healthline.com/health/nasal-cannulas-and-face-masks

       

    • #20971
      Brittany Foster
      Keymaster

      Hi Colleen,
      I haven’t experienced anything like this personally, but I have a friend who had trouble with her red blood cell count and her doctor’s said that it was because of her oxygen use. She had to get frequent infusions to help with balancing out her levels because she needed to be on oxygen. Also , I remember my oxygen supply company telling me that I had to always make sure to clean my mask on both my bipap and the oxygen cannula and mask when I used it. It helped to prevent things like mold and getting lung infections like pneumonia etc from a dirty mask or cannula. You don’t think about all the times you actually touch your cannula through the day and all the places your hands probably have touched that aren’t super clean. Definitely makes you think!

    • #23457
      Alfred Gronroos
      Participant

      Cannula usage and movement – I have no physical complications but emotional ones. I use a home concentrator with a 25 foot green hose and a 9 foot canula attachment. And a water attachment at the two hoses connection. Now how many times a day can you and me step on that water tube? Scares the crap out of you. Sit on a chair and the hose is under the leg somehow, I think it has a mind of its own. The green hose gets a kink and catches on anything available. Jerks on your nose. Someone, my wife, steps on the hose and jerks on my nose. Our little dachshound,/yorkie mix sits on the hose purposely and it jerks on my nose. And the green hose gets coils that attack my ankles. And my wife’s also. She does not like that,. I can get real irate at that hose that I am attached to. And become a grumpy old man to everything.
      Canula use in the vehicle. I use a portable tank in a cart strapped behind drivers seat. Leaving home I must remember to turn on the tank. The canula gets tangled in groceries, the parking brake lever, sit on it, my end is not visable so I MUST STOP AND EXIT VEHICLE TO FIND IT . When I pump gas I put the canula through the back window and hope it reaches the pump I am at, but once at my destination I must remember to turn it off. I have extra tanks along all the time cuz I have to use them. Fresh air for Al.

    • #23474
      Brittany Foster
      Keymaster

      @alfredjohn I can empathize with how you are feeling about the oxygen and the tubing. It gets frustrating when it gets caught on so much and it really does start to take an emotional toll. I think that is one of the hardest parts about being on oxygen therapy is just how emotional and overwhelming it all can be for us. I like your “fresh air for Al” movement! I agree! Fresh air is sometimes the best medicine and it’s what we need more of!

    • #23497
      Carol alexander
      Participant

      Yes Alfred
      all the things that you said I couldn’t believe you said so well it is madding
      I was in the grocerie store and I had my portable oxygen in the cart well I was looking in a frozen case and low a behold someone can along and started moving my cart that I was attached to so embarrassing

    • #23641
      Stephanie Mitchell
      Participant

      I’m fortunate as for now I’m only on 2 lpm of oxygen and I use an Inogen G5 POC when I go out of the house. I know that as my disease progresses, my oxygen flow rate need will increase. I dread the day that my POC will not be able to provide for my oxygen needs and I have to rely on using tanks when I go out.

    • #23654
      Brittany Foster
      Keymaster

      @stephanie I am glad that you can manage with your Inogen for now! I hope that continues for a long time for you and that you won’t have to switch to the smaller tanks or the bigger tanks. If you do end up having to switch down the road, there are ways to help make your day easier even with the tanks. I have some tricks up my sleeve 🙂

    • #23660
      Stephanie Mitchell
      Participant

      Thanks Brittany. That’s what I love about this forum, the friendly advise and expertise from others that have gone before me.

    • #23680
      Brittany Foster
      Keymaster

      @stephanie absolutely ! I couldn’t agree more. I mean, I’m not a doctor and didn’t go to med school but I HAVE been living with a rare disease for the last 28 years. So from how I see it, the doctors should be learning a lot from ME and from those of us actually WITH the conditions. Patient and doctor communication and relationships are so important.

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