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    • #18968

      In an ideal world, those of us living with idiopathic pulmonary fibrosis (IPF) would have people surrounding us who could help carry the items we need on a daily basis. Unfortunately, we don’t always live in an ideal world and we often need to figure out how to be strategic in carrying what we need to/from appointments, work or to social events. This may sound silly to some, however, lifting heavy items, carrying too many things at once or doing multiple trips to the car, can leave patients with IPF extremely breathless, fatigued and dizzy.

      There is also an added layer of difficulty for those of us who rely on supplemental oxygen, and are tethered to an oxygen bottle or portable oxygen concentrator (POC). Even if these small devices are strapped to our back, or over our shoulders; carrying items feels next to impossible when we’re dealing with the added weight of supplemental oxygen.

      Everyday (well, most days: my work schedule is becoming less and less as my lungs continue to deteriorate) I go to and from work, bringing items with me for the day such as my lunch pail, supplemental oxygen and purse. These are the minimum items I bring each day but sometimes there are additional things I need such as patient files, workbooks/binders or items for my colleagues, requiring me to make multiple trips to or from the car. These days are exhausting! I am almost too tired for a full day of work by the time I even get into the office. So my question is: how do others manage this?

      Aside from having someone (ie. a partner) help you on a regular basis, how do you carry items from point A to point B without getting too exhausted? Is there even an answer for this?

      It can include bringing in groceries, taking mobility equipment in/out of the car or other daily tasks that require strength and energy that we, as patients with IPF, just no longer have. Are there any solutions you can think of?

      If so, I’d love to hear from you!

    • #18973
      Jeannie
      Participant

      My Mom has come up with a solution for this problem that works well for her. She has a walker that has a place in the seat to store items for example purse, POC, and any other items  that fits. She eliminates multiple trips and has the support of the walker that keeps her from becoming exhausted.

      • #19003

        Hi Jeannie,

        Thanks so much for getting in touch with me regarding this topic, and for sharing the solution your Mom has found! It sounds like a good one, and I’m really glad it is working for her 🙂 One question: does she have a walk-out from her home to the car/driveway? I could consider this for sure, but would have to lift the walker down a few steps to get to my drive (just 2-3 steps) but it still might be better than taking multiple trips. I also have a walker packed up in the garage right now from a surgery I had… I’m going to give this a try. Thanks again for sharing!

        Regards,
        Charlene.

        • #19024
          Jeannie
          Participant

          She is lucky there are no steps for her to the garage from her house.

        • #19046

          Hi Jeannie,

          Thanks for getting back to me – I am so glad your Mom doesn’t have to deal with stairs, that is awesome! I only have a couple outside my place and they are enough to contend with. Hope your Mom continues to do well.

          Charlene.

    • #19001
      Lynne
      Participant

      I use a wheeled carrier for my portable oxygen if for example I am going to a place where I will walking (i.e. mall).  I also use a backpack purse.  When going to the grocery store, I use the regular hand held carrier for my poc so that I can place it in the shopping cart.  When I use the wheeled carrier for my portable, I leave it in my car.  I switch from the regular hand held carrier when I reach my destination.  Hope this helps you.

       

      • #19005

        Hi Lynne,

        Your message is indeed helpful, thank you! Like you, if I am going somewhere where I’ll be doing a lot of walking, I try to put my concentrator down on something and push it around. I do this often in the grocery store and set it in the cart, instead of carrying it. I have yet to find a good backpack to carry an oxygen bottle in. My oxygen provider says they come in so infrequently and when they do, they’re on a “first come, first serve” basis so I’ve had a hard time getting my hands on one. I have to still look at a potential solution that someone sent me from a camping store, I should do that right now actually so I don’t forget!

        Thanks again for sharing, your tips definitely are helpful and I am glad you’ve found a system that is helpful for you.

        Warm regards,
        Charlene.

    • #18997
      Leonard Olson
      Participant

      My Drive Rollator lets me carry my Inogen portable concentrator and lots of other items.

       

       

       

      • #19004

        Hi Leonard,

        Thanks for sharing this, I’ll have to do a famous Google search to see what a Drive Rollator is! 🙂 I’ll look into it. Glad it is effective in helping you carry your concentrator and other items!

        Warm regards,
        Charlene.

    • #19015
      Jay Turbes-s
      Participant
    • #19049

      Thanks for sharing Jay! I’ll definitely check this out and no doubt it will be helpful for others as well.
      Hope you’re doing alright.

      Cheers,
      Charlene.

    • #19064
      Glenda Rouland
      Participant

      I have the better breathers backpack ordered on amazon. It has pockets and pouches to carry everything I use in my purse

      when I use my wheeled sequal concentrator I use a small computer bag over the handle and pull it.

      I am on 4 lpm soo do use tanks locally in my backpack .

      i also got an iPhone case that has a door on back to hold license and debit card  which is a great organizer

      • #19066
        Mark Koziol
        Keymaster

        Hello Glenda, thank you for the awesome tips. Who knew there was a better breathers back pack? Wow. I am sure your tips will help many of our forum members. It sounds like you are very organized person. In our case it helps to be organized because it can minimize the physical effort needed to go about our daily routines. Thank you. Mark

    • #19068
      Chuck Harrison
      Participant

      Hi my friend ,

      i want you to know that I’m still with you ! It has been a long time hasn’t it ? So let me try and catch you up , I was and still am very sick , things went from good to bad , bad to good to where  I am right now first of all I can tell you that I do not like hospitals one bit ! Lousy food ( lol) . I have developed new things ( I have to stop here for a moment ) to get this far has taken me about 15 mins ! It seems I have developed something called essential  tremors started lightly but now they are full blown , that’s why  it’s taking so long to type , I tried voice but , it misspells  almost everything I say  lol , it’s really funny . I want you first to know I’ve missed you ! Though I was tracking the blog pretty good I lost track . I finally got my portable concentrater and that my friend does add freedom , along with that I know have a quad cane ! Like I said allot has changed but you know what I’m a happy man ,  two or so weeks ago I couldn’t do this 😎. I have a developed a sort of dizziness thus the cane , tired of kissing the floor and have given up driving ( great decsion ) more meds but I refuse some because I want to be aware of me , does that make sense ? So now for the big question and what’s been on my heart , how are you ? Travel , puppy , job all that stuff I want to catch up !

      Well going to stop here ,

      your friend always

      chuck

       

       

    • #19128
      Ruth Edwards
      Participant

      Same suggestion.  I use my Nexus walker.  My liquid oxy tank on the seat, along with my purse with one of the straps  wrapped around the handle area.  I have a water bottle holder hanging from one of the sides.  When I go into a store where there will be a cart, I leave the walker in the car and use the shopping cart for personal and shopping goods.

      I’ve been doing this since I was 55. 58 now.  Somedays it’s tough since people stare at you.  Between the oxy tubing up my nose and pushing a  walker, but looking middle aged…people seem to think that oxygen and walkers only happen to older folks.

      I also own a scooter.  Needed that when I was trying to get my strength back after a bad infection.  They too are very handy, but try not to get dependent on it.  Walking is always best..you need to keep moving.

       

       

    • #19805
      Dale Darling
      Participant

      I find a little comfort in carrying a can called BOOST Oxygen when I use my POC which only goes to 5L Liter when I am walking to much. My Doctor says I need 6L and 8L if exercising. It not a cure, but it is 95 percent pure oxygen that a lot of pilots and athletic people use if then need quick blast of oxygen too help them. I have been caught outside in the colder temps and almost passed out and when I went to inhale my lungs didn’t take air in, and that is damn terrifying and scary. It can be purchased on eBay site or maybe other places on the Web. It’s available in three different sizes, but it is not refillable, but disposable can. Price is anywhere from $10.75 to about $14.75 depending on the can size. I believe the larger can will provide a person with about 200 one second shots of oxygen. Does is help ? I don’t know, but it does give a little more confidence to me to get out of my chair and go do something.   Dale Darling

    • #19829

      Hi Dale,

      Wow, thanks for sharing this! I had no idea this product existed, and so much of this disease has to do with our mental comfortability and confidence when we suspect our oxygen might be low. Thanks for offering a potential solution to this for those of us who may benefit from the BOOST oxygen. Much appreciated!

      Charlene.

    • #19850
      Rayna
      Participant

      We have been looking for a 5L continuous flow POC. My son cannot activate the pulse kind. Does a 5L+ POC exist? Our DME company gave us obe that goes up to 3L continuous and my son uses an oximizer to get up to the 5L requirement to maintain min. 91% oxygen.

    • #19910
      Glenda Rouland
      Participant

      There are no portables to go to 5l continuous. I have sequal eclipse that will go to 3  continuous and 9 setting for pulse. The setting numbers are not liters

      • #19961

        Thanks for sharing Glenda! Hope the sequal eclipse machine is working well for you. How is the weight of that POC?

        Cheers,
        Charlene.

    • #19854
      Chuck Harrison
      Participant

      Hi Charlene it,has been a long trail I’ve been for these months. In this time I found out ( not surprised ) that I do not qualify for a lung transplant . Also found out that my immune  system terribly compromised ! So n these past months I have fought off several infections one almost landed me in the hospital , but I managed to (power through ) these set backs for now . I did get an ingogen 3 concentrator continuous flow and a portable pulse concentrator . It is 5.6 lbs and it has freed me up from the e tanks . The fight now is with insurance for a scooter so I can get around and it is such a battle , it s very maddening ! I have had many falls and my esntial tremors have gotten very bad , to the point I no longer drive , some what disheartening b but now I get to look at all the senerie 😎 So in reality I’m still that happy guy .

      but enough of me . What about you, traveling , still working ? Are you still at your baseline ? Miss you girl

       

      as always your friend

      Chuck

       

    • #19908

      Hi Chuck,

      It is so nice to hear from you, thank you so much for writing!

      It has been a long time, but I am really glad to you wrote despite still feeling very sick. I’m so sorry to hear this, how frustrating the last little while must have been for you. Do you know the trigger/initial cause of what made things go from good to bad? I couldn’t agree with you more re: hospitals! Having to be admitted for so long after my exacerbation in 2017 was tough on me, and I am sure this admission was hard for you too. Was it the new diagnosis of essential tremors that caused you to get so sick?

      I’ve missed chatting with you too, but I always trust our forum members/friends are prioritizing their health needs if they are away for awhile. Then it is wonderful to hear from them, as I have today from you! 🙂

      I’m so glad to hear your positive attitude has remained throughout all of this, kudos to you! I know that isn’t always easy. Has the dizziness been linked to anything? I ask because I’ve been experiencing this the last little while as well with no offered resolution/answers.

      I’ve been doing pretty well otherwise, trying to prioritize my physical and mental energy for things that bring me joy like spending time with my dog, crafting, planning trips, etc. I am going to Hawaii in September and truly cannot wait for that! I am in the thick of planning it now, and will be focusing more on that this week. Otherwise the job is fine, still just trucking along there, enjoying it but wishing I could be sustained financially doing more things at home as going to/from the office is quite tiring for me now.

      Looking forward to keeping in touch and truly hope you start feeling better soon. Thanks again for writing!
      Your friend,
      Charlene.

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