The Struggles of Using Supplemental Oxygen As a Patient with PF

The Struggles of Using Supplemental Oxygen As a Patient with PF

younger than 30

Following my idiopathic pulmonary fibrosis (IPF) diagnosis in early 2016, I was told that the doctors couldn’t predict how fast or slow my disease would progress. Since it was so “rare” that I had IPF before my 30th birthday, my medical teams were pretty transparent about not knowing what this disease would look like in two years or even six months.

Doctors told me there were two options: My disease progression could happen slowly and nothing would be different for me in a couple of years, or everything could change and I would require supplemental oxygen within six months. The latter was the case for me, unfortunately.

Adjusting to the use of supplemental oxygen as a young adult has not been easy, and I would imagine that others can relate. The common phrase, “The struggle is real,” resonates with me when I think of all the adjustments, accommodations, and, well, struggles that come with using supplemental oxygen. Sometimes the struggles make me laugh, such as when I get snagged on something and the cannula yanks off my face. Sometimes the struggles are incredibly frustrating to deal with.

I thought I’d take some time to outline the common struggles that I face as a patient with IPF who uses supplemental oxygen:

  • Driving with O2: Once I am in the car and ready to go, I am fine, but getting to that point can be a real challenge. Either I load my cylinder/tank or my portable oxygen concentrator (POC) on the passenger’s side of the car and take the hose off, walk around to the driver’s side to get back in, and put the cannula back on, or I have to load the tank into the back seat and feed the line up into the driver’s seat. The latter option risks the tank moving around when I am driving, and as a result of it being in the back seat, I have no option to access it if I need it while I’m driving. So, this isn’t my preference. If I get in the driver’s side and lift my POC over to the passenger seat, I can leave the cannula on the entire time, but I can’t lift any of my tanks from the driver seat to the passenger seat while leaving it on because they are too heavy and awkward. I prefer to drive with others so they can help me navigate my oxygen in the car, but I often have to drive alone. This is probably the most frustrating and common struggle for me with using supplemental oxygen.

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  • Getting snagged: This happens most often in the kitchen when I am cooking something and my cannula tubing gets hooked on a knob of the cupboard or drawers. When this happens, the cannula usually comes flying off my face as I try to move from one spot to the next but am snagged. Sometimes this is funny, until it happens several times in a row — then it becomes incredibly irritating. It’s been frustrating to cook or meal prep in the kitchen while using supplemental oxygen. Although my tubing allows for a lot of freedom to move about, it is still a struggle when the tubing gets snagged on something.
  • Being the cause of a “fall risk” to others: This happens only in an environment where I use my POC or home concentrator with the extra-long tubing that runs all over the floor behind me. I usually feel guilty for using my long hose at work, because my colleagues need to watch for it so that they don’t step on it, so they don’t obstruct my flow of oxygen, or trip and hurt themselves. As a result, I try not to use the long tubing very often, but sometimes it is easier than having to carry my POC or pull my tanks around. I very much miss the freedom of just standing up and walking somewhere, and using my long hose enables me to do this.

What are some of the struggles you’ve experienced and had to adjust to while using supplemental oxygen? Do you have any tips or tricks to share that make the struggles I’ve mentioned a bit easier to deal with? Please share them and continue the discussion in our Pulmonary Fibrosis News forums here.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

22 comments

  1. P.T. Ummer Koya says:

    Useful information. Iam glad that there is someone on the other side looking after day to day affairs with somewhat restricted freedom and happiness.

  2. ash says:

    One wishes all these different school and research institutes doing research in lung diseases would combine their efforts and speed up the process to help many different people suffering from all sorts of lung ailments.

    Overlap here and overlap there results in time and money waste.

    Easier said than done, but one can always hope.

    • Charlene Marshall says:

      I couldn’t agree more Ash, thank you for leaving this comment for us! It would be amazing to see all the research institutions combine their efforts to help all of us struggling with various types of ILDs. We certainly need things to be moving faster for us, even though I know many amazing professionals and researchers are in our “court” and are wanting to help. Here’s to being hopeful about faster treatments and answers! Thanks for sharing your thoughts, I know many of us agree with you 🙂

      Kind regards,
      Charlene.

  3. Parish Shah says:

    I know exactly how you must feel given my sister who is 75years old goes through the same things you are describing.She alot of the times forgets to switch on her oxygen concentrator when she is moving about the kitchen

    • Charlene Marshall says:

      Hi Parish,

      Thanks so much for reading my columns and for getting in touch via the comments. So sorry to hear about your sister’s diagnosis of IPF, and that she can relate to the difficulties that I’ve mentioned. It sure is an unfair disease, and I hope she continues to do well. It sounds like she is lucky to have your support!
      Take care,
      Charlene.

    • Sandy vanZyl says:

      ….this happens to me all the time, it’s not 2nd nature to be attached to a concentrator. One of my issues is if I want to go upstairs for a nap or just to do some cleaning or shower I use 8 to 10 to go up stairs and then I have to leave it at that level when I don’t need that much oxygen if I’m not climbing stairs…..sometimes I just want to jump out the window …..my life changed 100% overbite to working full time with ILD but no oxygen to Jan 3 oxygen needed 24/7 after a bout with pneumonia. It’s a ‘real life struggle’ for sure . Waiting for assessment week in SEptember and to get on the list for transplant ❤️

      • Charlene Marshall says:

        Hi Sandy,

        Thank you so much for reading my columns and for getting in touch via the comments. You’re certainly right – it feels unnatural and does not come as second nature to me to be tethered to something either. It is frustrating have to adjust our oxygen needs based on physical exertion as well, and then remembering to turn it down as that is important too so we aren’t getting too much supplemental oxygen. I wish none of us had to deal with this, but your post brought me some comfort that others experience these struggles as well. Wishing you nothing but the very best as you venture into transplant assessment in September. I’ll keep you in my prayers Sandy!

        Kindest regards,
        Charlene.

  4. Laura Redman says:

    My mum is only using her heavy house tanks and could really benefit from the home concentrator. Thanks for pointing out all the pitfalls as well as the pluses. I’ll do some research and get it installed. Thank you and a wishing you a struggle-free day.

    • Charlene Marshall says:

      Hi Laura,

      Thank you for reading my column and sharing your thoughts via the comments. A home concentrator (and a portable one for that matter) were both really beneficial for me to have, and I hope they can help your Mom as well. A good place to start would be to ask your current oxygen provider for more information about concentrators. I hope this helps 🙂

      Cheers,
      Charlene.

  5. Samantha C says:

    Hi, I am the wife of a person with IPF. Oxygen treatment is a recent addition to our lives. It’s interesting to read other users issues. T think a lot more cud be done to improve the oxygen tanks. They are so heavy and cumbersome especially when leaving the house. My husband has just changed to liquid oxygen and I think the the tanks are heavy & not at all stable in the car. Some sort of device would be useful to hold the tank in place so it doesn’t fall over etc. It would also be nice if the cases/bags were less utilitarian & a bit more funky. When you look at all the different back packs about it would be nice if there was a bit more choice for oxygen tanks. On another note we have found this website/forum very useful and have shared the website address with our IPF support group. 😊

    • Charlene Marshall says:

      Hi Samantha,

      Thank you so much for reading my column and for getting in touch with us via the comments. Sorry to hear of your partners IPF diagnosis, although I do hope using supplemental oxygen will be helpful for you both, once the adjustment takes place. I remember how much of an adjustment it was for me to be using oxygen in the home. I agree re: the oxygen tanks. They are heavy, especially some of the portable oxygen concentraters (POC) which are meant to be carried around. There is a really cool option on Etsy to have people make funky oxygen carry bags, although unfortunately they are not cheap! Thanks so much for sharing information about our forum with the IPF group you’re a part of, we greatly appreciate it as I truly believe we’re all stronger together! Please don’t ever hesitate to connect in future, and thanks again for all your kind words 🙂

      Charlene.

  6. Geoffrey says:

    I remember vividly the struggles every day w oxygen tanks , I had close to 15 large tanks in apt based upon air flow needed for 48 hrs, furthermore power went out twice once I had to go to hospital to be hooked up to o2 , I had many tanks in car because I lived in N.J. and traffic was terrible , I had to cross GWB when the call came . I went 7 times before transplant alone both kids in college, this sept I will celebrate 7 years post, I wake up every day blessed, now I walk almost 2 miles daily on 62 percent lung capacity, saw my twin boys age began great careers at Microsoft and Cisco having major problems when I was extremely sick, I feel the pain with tanks vividly

    • Charlene Marshall says:

      Hi Geoffrey,

      Thanks so much for getting in touch with us re: the struggles with oxygen tanks and I am so happy to hear of your positive experience with transplant. Congratulations on 7 years! What wonderful news, and so happy to hear you can be physically active with a 62% lung function now 🙂 How did you manage keeping tanks in the car in the summer heat of NJ? I am also on the east coast and this summer has been very hot, which has left me afraid to leave tanks in the car due to the heat but loading/unloading them can be exhausting. Glad to hear you’re doing so well, thank you for sharing!

      Charlene.

      • Bill says:

        It seems to me that the key factor is how much oxygen you need. To walk, I need 4L/min continuous, OTOH if I’m sitting comfortably I can last forever on 2L/min demand if I concentrate on my breathing. This makes liquid oxygen ideal for my excursions by car locally. I use a Helios 850 that weighs 5.7lb full. I can play table tennis with this in my backpack. Leaving spare oxygen in a car in hot weather is too dangerous so I keep a POC with a max rate of 3L/min in the car if I’m worried about running out. Normally a full 850 will last me all day.
        At night I use a larger concentrator.

        • Charlene Marshall says:

          Hi Bill,

          Thanks for getting back in touch with me and sharing your experience. You’re right – it is important to use oxygen as needed for different activity levels. Typically, I don’t change mine if I am walking vs. sitting and I really should try to do this more as I have prescribed litre differences depending on what I am doing. Maybe I should look into liquid oxygen, having it last a full day AND only weigh 5.7lbs sounds like a dream. Glad you’re still able to be doing the things that you enjoy 🙂

          Cheers,
          Charlene.

        • Michael Lamkin says:

          Hey Bill, I just received my oxygen tanks a few weeks ago along with a portable concentrator. You mentioned you felt having the tanks in the heat as a concern so I just wanted to let you know that the guy that delivered the tanks said heat was not a problem and it was ok to store them in the garage. I live in AZ where in the summer months I’m sure the temperature gets near 120f but was told not to be concerned. I hope he’s right because that’s where I store them. If you have other info. to the contrary please let me know. Thanks and take care!
          Michael

          • Charlene Marshall says:

            Hi Michael,

            Thank you so much for getting back to Bill and sharing the information you received on this re: storing oxygen tanks in the heat. This is actually really helpful for me to know as well (and likely others) as being able to store them in the garage would give me a lot more room on the main floor of my house. I may write a forum post about this, so others can hear the feedback you received from the guy who delivered your tanks. Good information to know! Thanks again for sharing 🙂

            Regards,
            Charlene.

    • Charlene Marshall says:

      Couldn’t agree more James! I know they have to start somewhere with the trials, but humans need speedier options for this disease!
      Take care,
      Charlene.

  7. Eileen Lewis says:

    Interested in hearing from anyone else who may have a two story home who is on 24/7.
    Do you pay extra for renting a second concentrator? Not on 24/7 yet but trying to figure out how to manage about 9 stairs between levels. Do you leave one cannula, hose and machine on one level then slowly go up the stairs where the second cannula, hose and machine are waiting? Have you installed the stair lift chairs?
    I’m new to oxygen as of last Friday.
    Appreciate any advice.

    • Charlene Marshall says:

      Hi Eileen,

      It is so great to hear from you – thank you for getting in touch, and as always, for reading my columns. I often think of you and hope that you are doing well 🙂

      So sorry to hear that you are new to oxygen, and that you’re experiencing the steep learning curve that comes with using supplemental oxygen. I remember that learning curve well, and would even say that I am still learning how to navigate things while tethered to a tank or concentrator. I have two-story home, although I am not on oxygen 24/7 yet so I can take short breaks from my oxygen to cook, clean, climb stairs etc. Therefore, I won’t be the most helpful in responding to your inquiry. Do you have both tanks and a concentrator at home? Typically I leave my large concentrator upstairs by my bed as I am on it at night, and it is the heaviest of all my oxygen types. I then have an extra tank upstairs, and a few downstairs. When climbing stairs, I try to put my smallest tank (D size) in the backpack when carrying it upstairs so that I have my hands free to put on the railing for extra support. I’ve also heard of people buying the 100ft tubing online (Amazon carries them I think) so they have almost-full freedom to move about their home even if they are attached to the concentrator upstairs. You just have to make sure none trips on it, or blocks the flow of oxygen but some folks on our forums have said this works for them. Does either of these suggestions help at all? Others may have more to contribute too!

      Goodluck, and never hesitate to reach out …
      Warm regards,
      Charlene.

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