The Travails of Dealing with Supplemental Oxygen

The Travails of Dealing with Supplemental Oxygen

Just breathe, passionate help for the PF journey
I try to stay positive while also being realistic about the hardships that go with using supplemental oxygen 24/7. But this week I’m irritated and worn-out from the hassles I deal with daily.

Here’s me being real. I’m tired of:

  • Having to fight with my insurance and oxygen providers to get the oxygen I need.
  • Tripping over the long cord that runs throughout my home.
  • My husband tripping over the cord.
  • My cat biting through the cord, letting all the air out.
  • Having to carry extra cords, tanks, and batteries wherever I go.
  • Worrying that something will go wrong with the oxygen I brought with me when I go out, because invariably it does.
  • Having to bring enough tanks with me to get through a doctor appointment or errand, as well as back-up tanks, just in case.
  • My cords getting caught on EVERYTHING!
  • Oxygen delivery drivers who either don’t show, or show up very late.
  • Having to pay for oxygen to breathe. Come on!
  • Being on the phone with my oxygen delivery provider for an hour, including being disconnected three times.
  • My poor nose getting dried out so there are crusties, and sometimes getting nosebleeds.
  • Wearing a cannula — or insertion tube — just doesn’t help my look.
  • Remembering to clean the filters on my oxygen concentrator, and replacing my cannula every week. Just so you know, I’m not very good at this.
  • Watching my supportive husband lug my tanks around for me. Sometimes I tell him I’m sorry he has to be a beast of burden.

I know I’m not alone. Please tell me I’m not.

This week I’ve been more irritated than usual. I keep removing my cannula when sitting, just to get a break — until my oxygen levels drop to under 90. Unfortunately, it takes only about two minutes for this to happen. But I love those two minutes.

Writing about this oxygen thing helps me get it off my chest. I hope it helps you by making you realize you aren’t the only one feeling this way. In addition to writing about, I cope better by shedding a few tears and telling my hubby I’m sick of it.

After my catharsis, I become grateful again that I have access to supplemental oxygen. I know that many people lack the access, insurance or money to get the oxygen they need to stay alive. And I know I’d be dead if I hadn’t had supplemental oxygen the past three years.

OK, I’ve said my piece. How about you? What are the biggest struggles you’ve had with supplemental oxygen? Do you ever feel the way I do about the hassles? And how do you deal with it?

I’d love to hear from you. I love the way we can all connect and learn from one another.

Please share this post with anyone you feel could benefit, or on social media. We’re in this together.

***

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.

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129 comments

  1. Carolyn Ridpath says:

    I agree with everything, except the husband thing. I am my own pack animal. I leave the house looking like I am going on a safari. Yes, I value my two minutes. Unfortunately, if I go longer I feel it. I do sneak a little time in the early morning in bed.

    Mostly, I am amazed at how much my body is responding to the oxygen. All kinds of little things are improving. My skin color is better; the texture of my skin has improved; I don’t have plaque build up on my teeth; and the list goes on.

    • Hi Carolyn…loved your comment. You made me laugh with, “I am my own pack animal. I leave the house looking like I am going on a safari.” I’m so happy to hear how much better you’re feeling with oxygen. That is wonderful! Great to hear from you 🙂

  2. Tami says:

    Kim’s columns always ALWAYS help me. She puts into words exactly the way I’m thinking some days. Thank you Kim! Because of YOU, I know that I’m not alone!

    • Hi Tami! Your encouraging words are such a blessing to me. I got teary (the good kind) when you said, “Because of YOU, I know that I’m not alone!” That means so much to me…it’s the reason I write the column 🙂 Thanks for taking the time to share.

      • Tracy says:

        I used to have all those frustrations with my hoses and cannula. But I also loved having such a long tether. My husband and I had a 4 bedroom home and several family members living with us. With our two dogs and his everyone elses animals we had 6 humans, 7 dogs and 2 cats. ALL of them got very good at avoiding my house and I had the run of he house and even part of the back porch. I’d give anything for that freedom back.

      • Debra Stanfield says:

        I know how you feel because I go through the same thing everyday. It sure gets old but what can you do but keep going and crying doesn’t help at all. I wanted a portable concentrator but the continuous on last about a hour and they are bigger and heavy .The smaller ones don’t put out enough oxygen. We had to buy a inverter just so it will work in our car. I have to hurry in the store or it gives out of power. What a life to live. This sure does get old. Well enough complainin, at least I am alive .

        • Hi Debra, Thanks for sharing…yes, I agree. It helps to put into words how hard it can be, and have others understand. On the flip side I totally agree…we are still alive! Thanks for sharing with us 🙂

      • Tami Womack says:

        Thank you Kim! You are a source of comfort and your writings… all of them.. really hit home with me. You hang in there and I’ll hang in there!!
        Sincerely
        Tami

  3. Jan says:

    Hi Kim,
    I feel your frustration! If you live in the Northwest switch immediately to an oxygen supplying company called Norco. They are excellent!!!! They even lend out portables for traveling at no extra cost. They also have liquid or frozen oxygen and is my freedom during the day. The little Helios 3000 I belt around my waste means hands free. My oxygen needs are still low enough, I can ride my bike or take exercise classes using 4 pulse. I have not flown yet. I am afraid of all the “stuff” I’ll have to take. No liquid oxygen where I want to go. It means Simply Go for night and Inogen for day.

    • Tami Womack says:

      Hi Jan,
      Thank you for replying with your info. I just have couple of questions….what is Helios3000 and where can I get it?
      Will Simply Go go up to 6lpm?
      I have a home concentrator and a few tanks that I can refill here at home.
      Many thanks!
      Tami Womack
      Coppell TX

      • Bill says:

        My life changed when I persuaded my supplier to give me LOX. The 3000 is for people who need very little supplementary O. The Helios 850 Marathon goes up to 6L continuous and 4L demand. The Stroller goes even higher but is somewhat heavier.

      • Carol says:

        Sequal eqinox goes up to 9, works on battery, car and electric. I love mine, it gives me a lot of freedom to shop and go on vacation. It’s to heavy to carry but it comes on its own cart

        • Thanks for sharing with us Carol. I’m so glad the Sequal pulse POC is working out well for you. I tried it and found it too heavy to get in and out of my car. It’s always nice to hear about others’ experiences. Blessings to you!

    • Hi Jan, I’m so glad that you have such a wonderful oxygen company. I’m so glad for you! I’m in CA and Norco isn’t in our area. I’m so glad you are able to enjoy getting around with your O2 on your belt. Enjoy every moment! Makes me smile to think of of you “hands free” and enjoying life to the fullest!

    • Peggy Lake says:

      Please too tell me about the little Helios 3000, I want one that you can wear on your waist. I have inogen but they do not have continual flow so since I wear a cpap at night I have to take a regular unit for nighttime. thats a lot of suff to carry. I have tripped on my cord many times. Once I hit our slate floor and needed 20 stitches. On the bright side, everyone always opens doors for you or puts you in the front of the line. But that is not much compared to the frustration. thanks for sharing

  4. Dave Raedeker says:

    Hi everyone, I have almost all the same concerns and problems mentioned. It is funny now that I think about it I take so much of this for granted and deal with it. ithere is very little thought about all those affects on my daily life. I guess I just deal with it because that’s the way it is.

  5. Lorraine Martel says:

    I read your story and feel so bad for you. I have been on oxygen 24/7 for over a year. I really don’t mind it all. I am grateful for every day that I get to enjoy life. I have a concentrator so luckily I just fill my own portable tanks. It is an adjustment being on oxygen but I don’t mind. My insurance covers the cost of my equipment so I don’t have to hassle to get what I need. The portable tanks are heavy (a little over 10 lbs.) but I still go for a drive or ride my scooter in the neighborhood. I hope that you feel more positive in your journey.

  6. Sandy says:

    I have a distilled water holder on my house oxygenation. My husband refills it about twice a week. Without this my nose dries up and bleeds. I get upset when my 50′ hose catches under furniture, on kitchen cabinets; you name what it doesn’t catch on. I get anxious often, but find that an .025 Xanax at bedtime a few times a week calms me down and lets me sleep! I’ve had IPF for 18 months. I hate being tired most of the time and not able to stand still for long mostly in the kitchen because I love(d) to cook.

    • Hi Sandy, thanks so much for sharing some tips to make using oxygen a little easier. So glad you’re able get some sleep. I just started sitting at a chair in my kitchen so I can still cook. I love that too! Blessings!

    • Sandy Hanna says:

      To Sandy from another Sandy. I know what you mean about the hose catching on everything. Sometimes I swear it’s alive and it hates me! LOL. I’ve been on oxygen for about 18 months, too, since getting a nasty pneumonia (which nearly killed me) and spending 3 months in hospital. Now damaged lungs as a result. But I’m so thankful to still be alive that I manage to control my anger with the equipment. I’m also blessed in that I don’t have problems with my provider as Kim doesn’t. We bought an Activox portable which I put in a mesh backpack and off we go–it’s working well for me so far, but will see what happens if my oxygen needs increase. We’ve flown with no problems. So I can’t really complain—my life is ok for now.

      • Ann Kornblatt says:

        Hi all, my name is Ann. I am from NJ. Thank all of you for your input, it makes me feel that I am not alone.
        This is all new to me. Until recently I only had to use oxygen at night.
        Please tell me if the Activox can be used on continuous mode for sleeping? Also, how high does the pulse go?
        I am freaking out over all this life changing changes.
        I immediately fell in love with you guys. I will write about me more, but that nap time is overwhelming me right now.

        • Hi Ann, Welcome…so glad you left a comment.I’ve never used the Activox, but I looked it up. It looks like it goes up to 4 lpm pulse. Does yours have a continuous flow setting? I’d ask your doctor to be sure. Glad to have you part of this supportive community!

  7. Beth Hunley says:

    This is all so true! Oxygen is my best friend and worst enemy! I hate looking different but refuse to stay home just because I wear oxygen! My husband is a great support system too. I just hate this disease and what it has done to me! But I am a fighter and a survivor!!!

    • Hi fellow fighter and survivor! I love your ability to feel the hardships of this disease and how it’s taken so much from you, while
      still embracing all you can do! Thanks so much for sharing 🙂

    • Rhoda Engelbrecht says:

      Beth, I too make myself become a survivor. All problems started 2003. A little pendant I have says it all, “never, never give up”. Was coined by Winston Churchill with an extra “never”. My change would be, “never, ever give up”. Times, when someone asks me how I’m doing? I look up to the sky, and say, with pointed finger, “he doesn’t want me”. Then looking downward, “and he doesn’t want me. So here I am, all 82 years of me, was born with AFIB, in that era, was diagnosed as, a heart condition of unknown origin. Gee special me, the only one on earth. Of course the medical profession and the depression didn’t help matters too much, so I survived, sort of. Had three children, without benefit of anesthesia, they we born, thank God, perfect. Now in my golden, golden years, what a misnomer. Have so many things wrong, but I keep going like the copper top battery. Only thing survived is my sense of humor. I intend to try to keep it to my dying day. Keeping up on plans for that day! What a party!

  8. Tami says:

    I think we all just deal with it and go on. We are all grateful for every single day!:-)
    But I’m sure we have all had 1 or 2 days out of 30 or more that we all can identify with Kim (& others)… it just helps to “voice it” and to not feel alone. A lot of it depends on how many LPM one is on.
    Most EVERY posting from Kim is positive and encouraging!
    And thank you to all who gave advice or tips on living with IPF.

    • Hi Tami…thanks for sharing. You are so right, I deal with it pretty well 90% of the time. Last week it just got to me, and I thought I’d write about it. I am on 8 lpm, so it is harder to get around than when I used my portable oxygen concentrator in a backpack and be hands free. I appreciate your encouragement 🙂

      • Dekle Vickers says:

        Kim,
        What kind of portable oxygen generator do you use? I am on 5 LPM, continuous feed, 24/7 and can not find a machine that allows me to leave home over night or to travel like my wife & would like too?

        Thanks,
        Dekle Vickers

        • Patty Samayoa-Diaz says:

          Dekler, I use to be in 02 24/7 until a got a lung transplant. I had a Respironic portable Oxogen concentrator and works with electricity and also batteries, they are FDA approved and you can bring them on a plane trip with you they are life savers. I hope this helps.

        • Hi Dekle…I’m on 8 lpm, so I’m not able to use my POC when away from home like I used to. I used liquid O2 now when away from home. When I used to be able to fly I brought my Inogen home machine which goes up to 5 lpm contniuous. It is small enough to fit in a suitcase (wrapped in the bubble wrap it came in), and check as baggage. The POC I used is an Inogen G2 and it goes up to 6 pulse. Check my 2 recent posts where I share about O2 options for home and for traveling. I made a video for each. Hope it helps!

        • Carol says:

          I have a sequel equinox, it’s portable and runs on battery and electric. Continuous flow is 3 but goes up to 10 pulse. I am oxygen 24/7 no this machine goes everywhere with me. At night I use a home concentrator but this one is suppose to do it. Insurance does not cover the sequel

  9. Colleen Puniard says:

    Kim, I thank you for your writing. I’m not on oxygen yet but your practical comments are so helpful. Not as scared as I used to be. Australia has different criteria. Have started to read up about it. My Doctor says I’m no where near that stage yet. My O2 sats are at 87-88 but rise above 93 quickly when I consciously deep breath. Once I stop being ‘aware’ it goes down again. Thanks again.

    • Hi Colleen, I’m so glad that my column is helpful to you, and that getting information helps with the normal fears that come with PF. I’m glad you are reading up on oxygen use and O2 sats. The higher you can keep your levels the healthier you’ll be! Blessings to you in Australia 🙂

    • Mrs V says:

      No you are not alone I am a 56 year old wife and mother who feel the same sentiments you are expressing ! I am approved for a double lung transplant but that does make me feel much better about my situation it’s not a permanent fix it just extends my life a few more years without oxygen so I often wonder is it worth the pain and suffering of going through the operation!

      • Thanks Mrs V,
        So appreciate your support. I’ve wondered the same thing! I’ve decided to do what I can and pray that God will direct me whether I go the transplant route or not. Great to hear from you

  10. Kelly says:

    Kim – I had quite a chuckle at your post (loved it!). I am a family member of an O2 wearer and I know she has “shared” her frustration with the walls at times. And I have tripped or stepped on her cord probably more times than I can count. But I will be her pack mule any day as long as she’s able to move about the cabin freely. 🙂
    Blessings to all patients, family members and care takers. We are in this together!

  11. Don Johnston says:

    I can totally relate to all of this. Being single is the worst part, people either stay away from you or they feel sorry for you. I don’t want sympathy, I want a damn set of lungs to free me from this mess. People forget you are just like them, have a need for companionship but I feel they look at you as defective. I guess I am in a way since I have PF and LCH, which is very rare in adults so my thinking is that I am a rare find. I have to stay positive in order to win this battle but every time I get sick, it takes that much longer to get back to where I was. With that being said, I always remember… I’m never giving up!!!

    • Don…so very sorry you are dealing with this alone. You are so very brave and an inspiration to all of us. You are most certainly NOT defective. None of us are. You are a wonderful man dealing with a double whammy of PF and LCH. We join you in not giving up! Thanks for sharing with us.

  12. Jean Windsor says:

    So glad to read all the comments. Just to know others are dealing with the same thing helps. My insurance approved a portable oxygen concentrator that is rechargeable and also has cord to charge in car. I just have small co pay. What setting you need for oxygen depends on how long it will last.

  13. Joy Becker says:

    My 65 year old/young husband has just been prescribed supplemental oxygen. He’s had 2 open heart surgeries in the past and also has emphysema. I’m concerned about him becoming a recluse due to the need for oxygen. He’s been on disability for 6 years and I still am working 8-5.
    What can I do to make this transition easier for him. Seems like another awfully large pill for us to swallow.
    I found all the comments insightful. Thanks for sharing.

    • Dear Joy, thanks for sharing. What a wonderful support you are to your hubby. I know it is so hard on both of you, and you’ve already both been through so much. I think finding a portable oxygen concentrator to keep him active is so important. Check out what your insurance will approve. It took me a while to get used to it all. It was hard for me to be comfortable going out in public for the first few months. Take good care…

  14. Dorothy says:

    I feel same as you at times, but I am thankful my insurance covers it and I have a great supplier. I think the worst thing is when you go out and have to rely on the portable tanks…it is pulse where at home it is continuous. I always loved to cook but find it a chore now, I also sit to do what I can.

  15. Everett Johnson says:

    Hello Kim, I used 24 hour oxygen for 3.5 years. Almost everything you describe I went through. My suplier was wonderful. We called and it was delivered. Sorry about yours.
    I think your feelings about oxygen are very normal. Even though it is saving your life, having a tube of extremely cold wind shoved up your nose is most uncomfortable. I hope you are or are on or getting on the transplant list. For me it was the beginning of hope.
    I also wanted to talk to people who were like me, or had a transplant. The only thing special about me is that I did get a double lung transplant. I was 64 and now I am near 76 and I am still going. I only tell you this to give you hope.

    • Karen says:

      Your post gives me hope. I turned 63 yesterday and my thoughts have been I’m probably too old to get a lung transplant. Thanks for God encouragement.

      • Missy Harrington says:

        Don’t give up Karen. My husband (has IPF) had a single lung transplant at 71 and was able to be off oxygen for almost two years. He’s fighting an infection and has had to resume oxygen 24/7 but never gives up! You can do it too!

    • Hi Everett, Thanks for your empathy and understanding. I’m so glad you got a transplant. That is so wonderful! There is hope 🙂 Unfortunately I need to go another 2 years to be considered for a transplant. I got PF from chemo and radiation for breast cancer. You have to be 5 years out from the end of cancer treatment before they’ll consider me. I’m hanging in here! Thanks so much for sharing.

  16. Dan Lynch says:

    Very interested in learning the process of going onto oxygen – either using a portable concentrator or going to 100% O2. The “nuts and bolts” of oxygen use would be an interesting read for me. I haven’t found anyone offering such a course to IPF patients.

    • I agree Dan…I had to learn everything from the school of hard knocks. If interested, Check my 2 recent posts where I share about O2 options for home and for traveling. I made a video for each. Hope it helps!

  17. Carroll says:

    I agree this is a horrible thing to have too deal with.

    Lately I have chosen to be more out spoken, especially when having to wait at the hospital lab. The waits can sometimes up to 3 hours and I don’t have enough 02 so I have to leave.

    Public unawareness also upsets me. I don’t think they understand what it’s like to short of breath or to be running low on 02. We as human beings take it for granted until you can’t breath.
    I try to approach everyday being grateful for the day and try to remain positive. I love to go for short walk in nature.
    What time I do have left I want to enjoy and make the best time possible.
    Carroll

  18. Elsa Vidal says:

    Good morning! I am writing for my father. He is 86 and we live in Southern California. He has pulmonary fibrosis and is on Esbriet, but is taking a small dosage (3 daily).

    For some time now, he has been sick to his stomach and now does not want to eat and gets sick about an hour after he eats. He does take his Esbriet with meals.

    Could any of you comment as to whether you may have had any similar symptoms, if you are on Esbriet, and/or the fact that pulmonary fibrosis is also related with lesser appetite?

    Would appreciate any feedback.

    P.S. Kim, it is very helpful to create this platform to share issues. I wish we lived in the NW, as we could use better support from dad’s oxygen company.

    Blessings to you!

    • Janis says:

      Hi Elsa… I did take Esbriet but became allergic to it. I had stomach problems from it and still do now that I’m on Ofev. What finally worked for me on most days is eating a cup of Dannon light Greek yogurt just before taking my Ofev/Esbriet. Now the doc has added probiotics, particularly Florajen3, which I take twice a day. I have very little problems now with stomach pain, heart burn or nausea.

    • Hi Elsa, what a wonderful support you are to your Dad. I don’t have experience being on Esbriet. Maybe others can chime in. I’m so glad that this wonderful group is a help to you. It sure helps to have others who understand.

    • Annie says:

      Can you try an edible marijuana product? Try one that is an indica, not a sativa. The sativa is the one that gives a high. The indica is what I take. It is expensive and so one day I want to get my marijuana certificate so that I can make my own marijuana butter and then make products like brownies or candies. I know that patients who are undergoing chemotherapy and are sick to their stomach are often told to smoke marijuana. Since we can’t smoke, we must use edibles. Edibles make me feel good and I don’t cough. The oils under the tongue are good and help me to sleep.

  19. Fortune Vilcko says:

    Good article! My husband has the same problems except our insurance covers his oxygen therapy. It really helps to hear others having the same problems.

  20. Kels Kirkland says:

    Hi, I have had all those problems with my O2!!! Before IPF I loved to scuba dive and I had to wear tanks to breath while diving. Now I cant dive anymore and I feel like I am scuba diving walking down the street! Unfortunately for me I got to very bad side effects from O2, one it dried my nose out so bad that a small hole through one nostril to the other and it gave me serve dry mouth to the point that my teeth started chipping and cracking. I am now on the transplant list. I relate to everyone…Much love Kels

  21. Wendy Ford says:

    Lucky in England UK we don’t pay for oxygen .
    I’m on 12 litres liquid oxygen when mobile.
    Even turning over in bed I get out of breath but I’m alive.!!!
    So I thank my lucky stars.

  22. Jamie says:

    You are not alone. The worst part for me is having other parents pick up slack so my kids can still participate. Ive been blessed to have some of the best girl and boy scout leaders to help. Theyll step on and get me rides or help carry things. But still i miss the days where I could just be mom. And seriously feel for my youngest who will never know a mom that doesnt need o2.. Although on the bright side the tub8ng makes a terrific teething toy.

    • Jamie…that makes so much sense…”still i miss the days where I could just be mom.” Dealing with PF and oxygen must be so much harder with children at home. So glad you have supportive people in your life. Loved your comment about teething toy…brilliant!

  23. Sandy says:

    I have an Inogen that lasts for 5 hours and weighs 4.8 lbs. I like it so much better than those small 2 hour containers. I had a cough for 12 years before I was diagnosed and that was because one day I couldn’t get out of bed. When the EMTs came, my oxygen level was 82. The day before I was fine. Some days are good and others I am just tired all day. I’ve had 13 fractures in my spine, 6 cemented and 7 healed by themselves (by not moving much). Thank goodness this is much better now. Glad to hear your spirits are ‘up’. Just enough worry in this world without worrying about myself.

    • Hi Sandy…yes that Inogen machine is wonderful. You’ve been through so much handling PF along with serious back issue. Glad it is so much better now! Thanks so much for sharing with us 🙂

  24. Sandy says:

    I was on Espriet for about 4-6 months. I lost 35 lbs because I just didn’t want to eat. I was taking 3 at each meal. My husband was begging me to eat and I just couldn’t. Finally my doctor took me off it! That was about 3 or 4 months ago. I’m doing fine without it I’m happy to say.

  25. Joan Gruber says:

    Loved reading all your comments. Don’t have PF, but have COPD. So I also have the oxygen 24/7. Friends take me out to eat and help carry my baggage. They’re great. My main problem is my cord. It kinks, I trip and the 2 cats think its a toy. Thanks for listening.

  26. Rhonda says:

    I have been on supplemental for 5 years. Some days (usually) I thank God that I live in a time where supplemental oxygen is available. Some times (usually) I get exhausted carrying around my POC every where I go, my big dog (110 lbs) laying on the tubing at home (try getting that out from under him!), caught on the furniture, all everyone else has said. When I first was put on oxygen and had to leave my job (where my lung injury occurred), my-I thought-best friend said “Now no one will want to date you”. I was in my 50’s, single, and enjoyed my social life. Guess what? Even though I am very self conscious any time I meet someone new, I still do get asked out. And I have the best quality of people around me now. People who don’t care that I have to lung Oliver *my oxygen with me. Sure I miss the things I loved to do, and can’t now, but I won’t let myself go there. I try to appreciate the things I still can do.

    • Hi Rhonda…I’m so glad you shared. I can just imagine your huge dog on your tubing! I’m so happy that despite being self-conscious (I am too) you still get asked out and have wonderful people to support you. That makes such a difference! Love your attitude 🙂

  27. jim mcgregor says:

    your not alone, i have been on oxygen 24/7 for 7yrs now its as needed, my normal range is82 to 88, if your insurence covers get a portable (inogen one)no tankes a used one cost a little under $1000.00 i have ,pe, pf, ph.
    \jim mcgregor

  28. Hi there! You are not alone. You nailed it on head. I’m tired of it all. I don’t have a cat damaging my hoses. But I do ride horses. I also swim with it sometimes I don’t. I’m constantly forcing my lungs to exercise. I have had PF for 5 yrs. I regret the necessary evil of having to contend with the hoses, & oh my sore nose. I keep that hose off as long as I can. I even had a Bariatric sleeve surgery lost 101pounds. It help. But my PF is induced by Rheumatoid Arthritis- Go figure right. ? Wishing us all the best and God Bless.

    • Hi Karla…thanks so much for sharing. I love your wonderful attitude, living life to the fullest! Congrats on improving your health with the bariatric sleeve. You’re an inspiration! So glad you shared 🙂

      • Kerry says:

        My PF is caused by my RA. It goes to your lungs; my doctor calls it a rheumatoid lung. It’s been very hard for me. I have MS, RA, Lupus, Sjogren’s and IPF. My husband died at 37 and we had three kids, two of them super young (5 & 7). Thank God they’re adults now but I keep thinking how much easier my life would be had he lived. I had to work until I was 66-no choice. Each challenge takes a lot out of me but what’s the alternative, right? I hate the 02. Can’t carry the portable easily so mostly I just stay home. I’m sure the MS and the RA are what makes it so difficult to walk and carry that with me. Spinal stenosis and Faraminal stenosis cause so much pain also. I have two cats but they don’t mind my tubes 🙂

  29. Connie says:

    I have been on O2 for 5 years. One thing I hate is when you are sitting down and want to stand but you are standing on the tubing. So when you rise up, your ears and nose want to stay where they are. This happens to me a lot when I go to church and sitting in a smaller confined space. I just praise the Lord and keep on going.

    • Connie…I know what you mean. I’ve told my husband I know what it’s like to be a dog on a leash! I’m relying on God too…one day at a time. I’d love to hear from you again 🙂

  30. Roger Cornell says:

    Ifeel the way you do at times ! I am 79 years old,have had copd for 20 years been on oxygen for 12 years. I do have good providers & ins.

  31. Tami Womack says:

    Hi Elsa,
    What a wonderful care-giver you are! I am on Esbriet too and I also experience severe nausea when getting to max dose if 9/day. Sometime I get severely nauseated at 6/day. I’ve been hospitizrd three different times for this and it is no fun. IPF does decrease your appetite. Nausea is a side effect of Esbriet. Hope this helps a little.

  32. Eric Strayer says:

    Hi. I get it. Really get it. Tripping on the 25′ tube? Yeah. Lots. My cat is pretty old and just doesn’t care about the hose. I’m OK with that. Going out with tanks is the biggest deal for me. Actually dragging the E-tank on wheels is not all that bad. Kind of bad as I am a always clipping doorways and such.

    But the worst issue for me is the feeling of exposure. Embarrassment may be the word, but using it is, well, kind of embarrassing. Longer trips by car, like to the transplant center (75mi) takes much more planning. Other than that I can drive myself around locally with little effort. Just that “exposure” thing.

    Oxygen delivery? Hahahahahahaha! Answer the phone? Ha ha again. I use Apria and they have the phone tree from hell. They also have an amazing amount of complaints posted. It was a couple of months before I realized I could have the water filter, 25′ hoses with swivel connectors instead of one 50′ hose and so on and so forth.

    Nose crusties? Globs of dried blood and goo. Cleaning the concentrator’s filters? Huh. Not a routine. Maybe it should be. My wife does the heavy tank lifting on those longer trips.

    I think my wife should be more tired of this deal than me. It has only been about 6 months now and I pretty much have always sat at a desk or a chair with a laptop all day anyway. With the cat of course. So I think I have it pretty easy compared to people that actually get out of their chair a bit. [Honestly, I’m not THAT bad.]

    OH, age may have quite a bit to do with this. I’m 67 and have been under the knife a few times and have some health maintenance issues already. If you are use to being out and about this could make all the hassles seem a lot worse.

    Gotta go. Thanks for the post. It is always nice to share experiences.

    eric

    • Hi Eric…Thanks so much for sharing your experience. It helps me know my struggles are normal 🙂

      I know what you mean about feeling exposed when out and about. The first 3 months I would drive to the grocery store 5 miles from my home to make sure I wouldn’t see anyone I knew. I’ve been on O2 almost 3 years now, so it’s easier now…but still hard at times. I’m so glad the adjustment to being at home wasn’t as difficult for you. I appreciate you sharing with us. I hope you will again 🙂

    • Peggie West says:

      I love hearing the men weigh in on the use of oxygen as I’ve been told repeatedly that I should just go about my life as usual wearing oxygen and not to worry about it. While I am grateful to have the oxygen, publicizing it has been hard for me. Recently while in the waiting room for an eye appointment a man walking by looked at me and said “bless you lady”. Now as much as I appreciated his genuine comment to me, it proves the point that, yes, people do notice the oxygen user. In the big journey with IPF, this is small stuff, but in day to day life its a biggie. … Total agreement about Apria..worse customer service ever. When I started on oxygen Jan. 2015, delivery guy dropped off the tanks with little instruction. My husband and I have had to figure out everything for ourselves. Thankful to finally have this forum to learn from others on this journey. Thankful every day to have a husband who is everything! Thanks again to all who are sharing here.

      • Thanks for sharing Peggie. It is really hard to adjust to using oxygen. It is hard to know that when someone meets me for the first time, they see me in such a different way, from how I was before getting PF. I’m so glad that your husband is so supportive. Me too…it sure helps!. We had the same thing happen when my tanks were dropped off. Ugh! Well we are fighters and keep going!

  33. MaryAlice gorman says:

    Yesterday we had a power failure and I went to the library! A safe place for mind and Body! Thanks

  34. Robert douglas says:

    I use two poc’s. I worry about continuity. Recently we went to the mountains and poc supplied by my oxygen supplier shut down. I switched to my own. The supplier came out and cleaned the filter and the battery contacts. At that time, my unit shut down and he cleaned mine too.
    I use the car charger when driving. I am going to the beach in June and plan to buy a floor model.

    My wife has ALS and I need to stay “healthy”

    • Dear Robert, what a resourceful idea! It is so stressful to worry about the O2 I have not working. It does lower my stress to always have a back-up with me as you do. I am high flow now, but when I was on a lower flow I really like the Inogen “At Home” model (goes up to 5 lpm continous). It is quiet and small enough to put in a suitcase (in the bubble wrap they ship it in). You can even check it as baggage on the plane. I’m blown away with all you have to do with…PF and supporting your wife who has ALS. You are an inspiration!

  35. Marina Arpatzi says:

    Dear all,
    It’s my 46th birthday today and, unfortunately, I’ve been suffering from IPF since 2000. I’m from Thessaloniki, Greece, mother of a 14-year-old boy. In the last 3 years I completely rely on liquid oxygen. Furthermore, because of the daily cortizon intake, I suffer from osteoporosis, having 3 vertebrae and some ribs broken. Since I didn’t want to miss anything from my son’s school, sport and other outdoor activities in general, I tried to find a way to carry my portable device. I couldn’t carry it on the shoulder or as a backpack, so I had a special trolley made, where I place the device and move it wherever I go. It is made of aluminium so that it’s lighter than an ordinary trolley-suitcase. Could I ask you something? What kind of device do you use that serves you with 12lpm? Mine is for up to 6lpm…. I’m in pain right now, I’ll have to go. I’ll try to comment again soon.

    • Hi Marina…so good to hear from you. Happy birthday…you are fighting hard to be there for your son in every way possible. He is so blessed to have you as his Mom. I’m so sorry you have osteoporosis too. That is so much to deal with 🙁 What a wonderful and resourceful solution to have an aluminum trolley made…brilliant! I have a “Caire High Flow Stroller” that goes up to 15. I have 3 of them (rented through my oxygen provider). They each last 1.5 hours at 8 lpm. So glad you commented, I hope you will again soon.

  36. Wendy Ford says:

    Hi I’m from the UK and luckily we do have the NHS so don’t pay for oxygen etc.
    Still, being on oxygen is a pain as we all know.
    I’m on 12 litres liquid oxygen when mobile and low when sitting and of a night.
    Fed up of well meaning people saying do you know your machine is smoking!
    Ugh! I am always polite and say yes it’s ok it’s just a cold mist from the liquid oxygen .
    One of these days will get it printed on the back of a tee shirt to wear!!
    Then you get people who presume they know it all and say I know what you’ve got it’s COPD my Aunt ,uncle etc had it and they used oxygen bet you were a heavy smoker!!!
    Grrrrr!
    Yes admittedly I had never heard of IPF till I was told that’s what I had but I keep my patience and briefly describe the disease so spreading the word and think well another person who won’t state that again and may in future spread the word too!!
    What I do love is children though who stare and ask parents what’s wrong with that lady?
    Parents usually try to shut them up but I say excuse me it’s ok to wonder and that I’m on oxygen which helps me to breathe better.
    Children only need to know the basic and usually are quite happy then.
    Wasn’t we all curious?
    Aren’t we still curious?

  37. May Starr says:

    I’m trying to find a portable concentrater that I can take on a cruise with me and not have to pay a fortune for me to rent. Most are $35.00 a day and that adds up.

    • Annie says:

      In the US, Medicare will pay for one. You can buy an additional battery but they are expensive. We were lucky and bought my extra battery on Ebay.

  38. Judi says:

    Wow….I am so happy to find you. My husband was diagnosed with PF and COPD in March. He is on oxygen 24/7. We never imagined, talk about life changing. We have issues like many of you with the cord, but are so thankful for the technology. We have so much to learn. I have learned so much from all of you. Blessings to each of you.

  39. Kathie says:

    My husband has IPF. He started having issues last year and since diagnosis he has had lung cancer surgery,collapse of the same lung and two months after that a heart attack and open heart surgery. We are thankful for everyday but often feel the struggle. The IPF is advanced and we often wonder why it wasn’t diagnosed earlier when his health would have allowed for a lung transplant. We are still dealing with a learning curve as far as activity, flow rate. He recently moved from 5 to 51/5 liter. We had to get a larger concentrator. Thank you for your newsletters and others that share their tips and experience.

  40. Joan West says:

    It was such a relief and pleasure to find this newsletter and particularly this article. I am fairly newly diagnosed, although have had supplementary oxygen for almost 11 months now. First I had a fairly long wait to get my initial test results, some of it due to my GP being on vacation and then retiring. Finally after 3 months I got the diagnosis of pulmonary hypertension. After my breathing test at the hospital I was put on oxygen 24/7 as my SAT was at 73. I didn’t know and didn’t any realization at the time that I was so short of oxygen. So anyway, I went home sporting my “new look”, Hubby was shocked when I appeared from the pulmonary test department carrying a portable oxygen tank on my walker. More time passed and I got to see a specialist in Ottawa, and at my last visit got my diagnosis of pulmonary fibrosis, caused by almost a year long episode of pneumonia/bronchitis. So I am not really surprised. I am really glad to see all the moans and complaints about the 50 ft tubing around the house. I thought it was just me being a grumpy old woman….LOL!
    Fortunately in Ontario, Canada we do not have to pay for our supplementary oxygen or equipment. Well, we are allowed a concentrator for daily use with 50 ft hose and as many nasal prongs as needed to change when necessary. Also I have a large tank of liquid oxygen in the laundry room which is where hubby fills my portable tanks which last about 3 hours. I also have one compressed oxygen tank which just sits there for emergency use. One good thing about the LOX storage tank is that if the power supply is cut so my concentrator cannot work, I can remove my hose and put it on to a port on the LOX tank and use the LOX for the time until the power comes back. So I am very thankful for all of this. Our delivery man comes every Friday between 11 and 3 p.m. and never fails, and he fills up the LOX tank each week after we have used some for outings, etc. I have also been able to borrow from my supplier a Simply Go portable with batteries and car plug for our trips to Ottawa (an hour each way, plus time at hospital). The technician at the oxygen supply company is great, she comes to the house to test me, and fills all the forms for the government etc. I can call or go in and see her at any time, no appointment necessary. The local depot is only about 10 minutes from home. I am very thankful for this.
    I must have my moan though and say I absolutely HATE the tubing. The plastic coils upon itself and makes pretty pattern around the floor but always has a big knot of coils at various places, ready to trip me up, or get caught around my walker wheels. Several times it has become detached from the supply and I have felt faint and dizzy. After one or two episodes of this I have come up with a way of connecting the main tube to my nasal tube, and where it joins I have a looped elastic band on one section, and one on the other side, and then a small piece of elastic hand to tie these two loops together. It gives me protection because if it becomes disconnected, I can find the other end without having to walk half way through the house looking for where it had fallen off.(gasping…).
    If I can have another gripe it would be the most important one for me, and that I really wish I had a control within reach to change the flow of the concentrator. I am going to do some checking on line and see if such a thing exists. Right now, if I am on 3 or 4 lpm resting, and I walk throughout the apartment, it could be something like 50 ft. at the end of which I am really gasping and have a hard time recovering. If only I could then turn up the flow to say 6 for 5 minutes or so, and help the oxygen a bit, until I get back up in the 90’s. A concentrator controlled by my iPhone would be great, but even some kind of gadget that is manual would be great.
    I am now resigned to spend the rest of my life using oxygen, so I had better get used to it, as at almost 84. years old, I guess it won’t likely be an extremely long time.
    Thanks for all above giving their views and points of interest. I shall be back to check new messages. Cheers all and happy breathing!

    • Hi Joan, thank you so much for sharing your experience and your gripes! It helps to know we’re not alone and struggle with the same things. So glad you have great oxygen service. I love your solution for when your canula gets disconnected. Clever!

  41. Sandy says:

    For Nikki, I wake up with dry mouth sometimes through the night and a visiting nurse suggested purchasing Biotine (drug store, Walmart). You just swish it in your mouth for about one minute and spit it out. It lubricates my mouth enough that I go right back to sleep.

  42. Bob Theile says:

    For dry mouth I use Act (Walmart, Shopko). To save my nose and ears from pain from a sudden tubing stop, I use a clip (one that would hold 10 or more sheets of paper together) and attach the clip and the tubing to my shirt, leaving some slack in the tubing between the clip and my nose and ears… Doesn’t prevent the stoppage, but does reduce the pain…I’m 80 and have been on oxygen for 3 years.. normally on 4lpm when on my feet and 2lpm when I’m seated… At rehab today after being down to 82 on the treadmill at a slow walking pace, the therapist said I should talk to my doctor about increasing my lpm to 5 or 6.. I like my portable concentrator, but it doesn’t function well at 4, never tried it at 5.. Home concentrator will handle 5 and I sit a lot at home… My wife and I have enjoyed a lot of plane travel and cruises the past 18 years of retirement and I’m not looking forward to not being able to fly…Long car trips have been fine with the portable.. but if I have to go to tanks, I’d have to really load the car… As to those people who avoid being seen in public.. you have to just get over it… Your friends will understand and don’t worry about what strangers may think. We’ve enjoyed a great social life and continue to do so.. stay positive. By the way, my problem is COPD and it is self inflicted.. No one to blame but myself.. I quit smoking over 20 years ago, but the damage was already done… I’m very thankful for my wonderful wife, who now has to not only take care of the yard and the flowers, but also the snow in the winter… I did take over the cooking about 16 years ago, since I wasn’t much help other than that… Remember there is still a lot fun to have in your life.

    • Hi Bob, Thanks so much for sharing your solutions and optimism with us. It’s always nice to hear about the clever solutions others come up with. It takes time for us to adjust to all that comes with using oxygen. Thanks for sharing with all of us 🙂

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