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    • #29700
      Jen Cueva
      Keymaster

      I found this simple yet informative article on using oxygen at home. These simple tips can help you remember the main concerns, like tubing, humidifier bottles, and more.

      If you have any tips to add, please feel free to share them.

      Give this a read and let’s talk about it.

    • #29701
      Colleen Steele
      Keymaster

      @jenc I think it is super helpful to share basic tips like this. For those of us who have been in the PH world for a long time, we might sometimes forget how new all of this is to many people. While just trying to adapt to the idea of needing supplemental oxygen the tips shared in this article might not be considered.

      Another one I would add, which I think we discussed under another topic, is dealing with the heat generated by a home oxygen unit. My son kept his in the hallways outside his bedroom door which helped keep his small room from getting uncomfortably hot.

    • #29729
      Jen Cueva
      Keymaster

      Thanks, @colleensteele. I agree. Many of us, even after being on oxygen for years, forget some of these basic tips. I like the reminder that you offered about the heat. My concentrator is in a spare bedroom, actually KK’s bedroom, lol.

      It does generate so much heat. At my mom’s, I used the oxygen machine there only at night. I used my POC during the day. After trying to use it inside the living room, it was created so much heat. Her living area is pretty small, and people were in and out. That was a reminder to us just how much heat the machines can create. Plus, the machine there was older.

      Again, thanks for that reminder and your son’s solution for this.

    • #29739
      Susi Steppins
      Participant

      Thank you so much @colleensteele for bringing this up.
      It is a bit difficult to get used to.
      I sometimes get so frustrated about it.
      I am generally a pretty positive person but my oxygen tubing has thrown me into a tantrum more than a couple of times.
      I seem to get it caught on everything.
      Area rugs, which are needed in our home because Oliver, our beloved dog, is too afraid to walk through the house without them, have become an unwelcome obstacle.
      Even just the noise of the machine is hard to get used to.
      I appreciate both you and @jenc for all of the insightful topics you post here.
      You truly do make my journey with this a bit easier.

      • #29743
        Colleen Steele
        Keymaster

        @s-steppins it is always so nice to hear when members are finding the forums helpful. @jenc gets credit for finding the article to share.

        You bring up a topic that I don’t think we have discussed yet, the noise of the machine. You are right about that, it takes some getting use to. Members are welcome to start their own topics too so if you ever think of one Susi, please feel free to do so. If you need help on how to do that let us know.

      • #29760
        Jen Cueva
        Keymaster

        Hi @s-steppins, you are too kind. I am grateful that you find some benefit here in the forums. It is a team effort.

        You mention noise, perfect timing. This week Apria came to exchange my concentrator. They said that it was new. But it is so loud compared to the old one. The noise drives me nuts. The machine is far from new. I called this morning, and they are supposed to send out a different, quieter machine. So, stay tuned, and I will let y’all know if I do find a quieter one. I hear that other brands are quieter. Invacare is what they provide me.

    • #29745
      Chris
      Participant

      We live in a three story townhouse so keeping tubing straight is a chore, but doable. I keep my concentrator on the third floor in the hall and that is a good place to drop the extra heat and keeps the noise down on the main floor. I have figured out my limits with 50′ of hose and just switch to my POC that I keep on the main floor if I need to venture beyond. I do understand the tangle on everything and carrying anything with two hands is impossible. So again, switch to the POC if needed.

      I did have a funny situation with a guest that joined us for Thanksgiving. He had seen me wearing my POC but when he came to the house and there was green tubing everywhere on the floor he was kind of freaked out. He was afraid to step on the hose thinking it would cause me harm (Nice guy!). So I now tell guests when they arrive that stepping on the hose is normal.

      Oh, one last tip. I use a rubber band and a clip to make a snubber to take the strain off my nose hose if my hose gets caught on something while I am moving around. This keep my nose hose from feeling so much like a dog leash. The rubber band wraps around the hose tight enough to retain it without constricting it connects to the clip and the clip attaches to my pants pocket.

      • #29762
        Jen Cueva
        Keymaster

        OMG, @b2testnav, I can only imagine. I have a single story, and my 50-foot hose with an extension only makes it to the washer, not even the dryer, lol. I, too often, find that I need to use my POC at home. So I am grateful to have it, but many do not.

        I joked with my hubby and said I could wash clothes all day; the dyer is his part, lol.

        Too funny about your friend and stepping on the hose. My hubby often does that accidentally when we are both in the kitchen, and he freaks out. My hose gets caught on cabinet knobs and things. Do y’all have this issue, too?

        I was not on oxygen 24/7 until I had COVID, so it was like when I was first diagnosed again. I will be happy to get back to my “norm” in the future.

        I like your tip because I do call my hose my leash, lol. I am off to look for a rubber band once I am done here. Thanks so much.

      • #29764
        Colleen Steele
        Keymaster

        So many great tips @b2testnav, thank you! I remember my son’s tubing getting kinked sometimes. Does anyone else have that issue?

    • #29771
      Susi Steppins
      Participant

      @colleensteele, my tubing gets kinked all of the time.
      At least it did until I read here that some people were putting their tubes in the dryer for a while.
      It worked wonderfully for me.
      It makes the tube so much more pliable and even seems to help with it getting caught on everything.
      Now, whenever Brad hears me cursing because I am getting caught over and over again he will come take my tube and throw it in the dryer for a couple of minutes and stretch it out for me and problem is solved.

      • #29783
        Jen Cueva
        Keymaster

        Awesome, @s-steppins. I am grateful that the dryer trick worked for you, too. We just found that tip within the last few months. We throw in a towel with it.

        LOL, I love how you say; Brad hears you cursing, so he knows its that time, again, lol

        Sadly, I have no update on my new machine yet. Apria, my O2 company, did not show up yesterday. They told me that it was pushed through today by a supervisor, no idea what time.

    • #29774
      Dawn
      Participant

      When I first got my concentrator I kept it in my bedroom, but the noise bothered me too much. I moved it to the living room, around the corner from my bedroom, and it’s worked well there. Since I have a smaller house, I can go wherever I need to upstairs when using the oxygen in the house. I don’t use the oxygen in the house every day, just on those ‘off’ days when my breathing isn’t as good. The one thing I miss, although I didn’t use it all that much, is not being able to have a fire in my fireplace in the colder weather. I loved to just spend an evening laying in front of the fireplace watching the fire, reading some, just relaxing. I’m too afraid of the oxygen to do that any longer. These were good tips, Jen, thanks.

      • #29784
        Jen Cueva
        Keymaster

        Hi @dawnt, thanks for sharing your experience. I wanted to let you know that we have a fireplace; I stay so many feet away from it with my oxygen. My living room is set up where the fireplace is in the opposite corner of my recliner.

        You mention that your house is smaller, but it may be a safe distance for you to enjoy your fireplace.

        Have an awesome weekend. I hope that you can enjoy the horses some.

    • #29804
      Jen Cueva
      Keymaster

      I apologize for the delay, y’all. The oxygen man showed back up late Friday evening. He replaced my oxygen concentrator with another brand, DeVilbiss oxygen concentrator; it is much quieter but only 5 liters. I am hoping to wean back down, so that works for me.

      I hope that y’all are breathing well and not fighting spring allergies this week. Today we have a nice sunny day, which always boosts my mood. What about y’all?

    • #29810
      Sally Hoffman
      Participant

      It always amazes me how one man’s trash is another man’s treasure. I use oxygen at night. My bedroom is the coldest room in the house. My concentrater is keeping the room warm and toasty! Hehe. Thanks for all the great ideas.

    • #29812
      Jo Ann white
      Participant

      I am on 5-6 liters 24/7. Outside the house I can still use a bonsai regulator on a d oxygen tank, fortunately. A tank lasts me 3-4 hours. When baking I always worried that my cord would hit the hot oven door and melt while I was taking things in and out of the oven. To keep this from happening I now put the cord over my right shoulder and across my back, then clip it to my slacks on the left side with one of those clips used to close potato chip bags. Keeps the cord out of the way really well. Also have big hooks on the wall above my concentrators to hold extra cord when I don’t need the full 50 foot length. Keeps me or other people from tripping over the extra.

    • #29813
      Jo Ann white
      Participant

      Another tip! One of you mentioned cord getting stuck under furniture. I had a piece of furniture near a doorway with a corner that didn’t rest fully on an uneven floor. As a result, almost every time I went in or out of the room I would have to backtrack and release the stuck cord. Very frustrating, especially if I had my arms full or was in a hurry. Everything I tried to fill the gap was soon removed and eaten by my dog!!! Mark finally got a strip of adhesive backed Velcro, cut it to fit the corner, and lifted the cabinet and stuck it under the problem corner flush with the edge. No more entrapment!
      Jen, you talk about trying to reduce your oxygen dependence. Since I seldom can get saturation out of low 90s I am sort of afraid to try this.

    • #29814
      Jo Ann white
      Participant

      I also found a cannula that I really like from Captiva with a 4 foot cord so the place where it links to the tubing is no longer on the floor like it is with 6 foot ones. That really helps keep from getting caught on things. After almost 2 years on high level oxygen i still learn new things all the time. This site is really great for that.

    • #29826
      Jen Cueva
      Keymaster

      Hi @jo-ann-white, thanks so much for sharing your oxygen tips. These are beneficial tips that I may try, too.

      You mention trying to reduce oxygen. If you are still in the low 90s, I would not suggest decreasing. Please check with your PH team as far as what they expect your oxygen saturations to run. I was told once mine gets 96 or above on multiple days; I can decrease by half a liter.

      I have not heard of that cannula brand, but I will look into that. I use a micro-cannula because my nose is so small.

    • #29830
      Jo Ann white
      Participant

      The cannula I use probably won’t work for you as the small ones flip out of my nose. I use the 6 foot ones I get at Tampa hospital and the 2 foot ones from Captiva that stay in my nose. Didn’t think I could decrease my oxygen level but it was worth asking. At least tyvaso and tadalafil have been keeping me at that level for almost two years now.

    • #30875
      Chris
      Participant

      Just another quick solution to stop the kink at the supply barb.  I found some hair keepers at WallyWorld.  The ones that are like a little round coil a little slinky.  I cut them open and then twist the keeper over the hose and the connection.  This keeps the hose straight at the connection and stops the kink at barb.  I use two 25′ green supply hoses with a rotating connector at the 25′ point and at the cannula.  This keeps them relatively untwisted.  I also gather the hose up as I walk towards the source and then drop it out as I walk away.  I use the same technique for making hanks out of rope and twist one way and then the other so I don’t introduce a bunch of twist into the hose.  I also stretch my hoses to keep them straight.  You would be surprised at how much you can stretch them without breaking.  As a rule of thumb I grab about 5′ and stretch it to 6′.  Kinks gone!

      • #30891
        Colleen Steele
        Keymaster

        @b2testnav that’s what I love about these forums, I’m always learning something new. I never thought of using those hair coils. What a clever idea! I am familiar with the step and toss though. It kind of feels like you are at a rodeo, right?

        Laughed at the WallyWorld comment. That reference was new to me but that’s what I will call Walmart from now on!

    • #30882
      Jen Cueva
      Keymaster

      Hi, @b2testnav; that is an excellent tip. I know those hair grabbers well. My daughter uses them, and I bought her some a few years ago. I will have to have my hubby look when he goes back to Wal-Mart. I love that you call it WallyWorld; my Daddy says that, too, LOL.

      I also do that walk and stretch trick. My hubby says, take it easy on that hose. It is pretty darn durable.

      Isn’t it interesting the things we find as we look for solutions to live lives with PH?

    • #34231
      Jen Cueva
      Keymaster

      Because I continuously struggle with deep lines on my face each morning when waking from my oxygen cannula, I thought I would ask here. Are y’all battling with the same? How are you removing it minus rubbing your face so hard in hopes that the lines disappear soon, especially if you’re going out and your POC cannulas sit in another area on your face?

      Does anyone use the soft cheek protectors to help?
      I have used folded gauze to wrap around the tubing, which helped, but it falls off quickly.

      Another recent tip I read about was using eyeglass straps that athletes use.

      What’s your secret to waking up with fewer cheek indentations across your face from your oxygen cannula?

    • #35823
      Jen Cueva
      Keymaster

      Hi @n5jjr, I thought you might also benefit from reading some of the comments from others on this topic. I know you mention that oxygen is limiting your wife’s mobility. I believe the portable oxygen concentrator (POC) would be the best solution if insurance covers it.

      • #35825
        Mike Morriss
        Participant

        We have homefill.  We have one of the smaller bottles and 3 of the bottles next size larger.  We believe that is about as small, light, and unobtrusive as the POCs.  We are on medicare.  Our oxygen provider is a great company but doesn’t deal with POCs, just the small, portable tanks.

         

        • #35826
          Jen Cueva
          Keymaster

          Hi @n5jjr, that sounds like you are happy with the home-fill system and smaller tanks. Does your wife carry those in a backpack or large purse when she goes out?

          Maybe she needs more time to get used to using oxygen when she is out and about. How many liters is she on?

          I’m happy to hear that y’all are pleased with the oxygen company. That’s important.

    • #35827
      Randolph Reynolds
      Participant

      I wondered if there were others on long tubing (50′) having trouble with the curling and kinking.  Lots of ideas here.  The one of putting it into the dryer sounds promising.  Otherwise even when I stretch out the kinks after a few weeks there are so many that I put on a new tube/cannula.

       

      • #35828
        Joyce Sandberg
        Participant

        I use a power chair and am always getting tangled hoses into wheels.  My husband usually rescues me and untangles.  I am on oxygen 24/7 and consistently check my sats with my oximeter.  If I get a lower reading than usual the next thing I do is check the tubing.  Most often there lies the culprit (a split leaking oxygen).  As for the noise level to keep it down, I place my 10 ltr home fill system in another room on carpeting (it mutes the sound).  Always dealing with tubing  challenges; it is a way of life.

        • #35842
          Jen Cueva
          Keymaster

          Hi @joyce-sandberg, I can imagine how challenging it is with your oxygen tubing and using a power wheelchair. Thank goodness for those husbands that rescue us, right?

          Your suggestion of putting the machine on the carpet in another room helps. We had hardwood floors in our previous home and used a nice cushioned rug under my concentrator.

          Thanks for your reminder to check the tubing if our sats are lower than usual or if we seem to be struggling to breathe more. That is an excellent tip.

      • #35833
        Mike Morriss
        Participant

        The smaller tank we have is 4&3/8″ diameter and 8″ tall, not counting any valve or home-fill adapter.  It sounds like, from https://applied-inc.com/oxygen-cylinder-sizes-and-info the smaller cylinder we have is an ML-6.  It looks like getting an M-4 or M-2 would help some but I don’t know if it would be worth the price.  Also, since our supplier only has ML-6 and M-9 cylinders, I don’t know what we’d have to do to get a smaller tank fitted with the home-fill adapter and also the valve that works with what looks like an OxyGo Conserving Regulator supplied by our supply company.  Also, the home-fill machine is set up for filling the 4&3/8″ diameter cylinders and the M-2 and M-4 are 2.5″ and 3.2″ diameter.  She uses a carrier bag.  She tried a backpack briefly but didn’t like it at all.  If she had a better pack she might like it.  The pack we had was just something we had for general purpose stuff.  She’s currently on 2l/min.  I have sent a message to applied inc. asking about getting an M-2 or M-4 cylinder set up for us.  Any help you could provide would be appreciated 🙂

        • #35839
          Cathy Brown
          Participant

          I have this backpack and another similar one. https://www.amazon.com/Vive-Tank-Carrying-Bag-Accessories/dp/B07JBKWRXN/ref=sr_1_1_sspa?crid=18IWGIT5ZHW09&keywords=oxygen+backpack+tank&qid=1663120461&sprefix=oxygen+backpack%2Caps%2C126&sr=8-1-spons&psc=1&smid=A164XQT7IPAAIU

          They’re made especially for oxygen tanks and are so much more comfortable than using a regular backpack. I prefer tanks to a portable concentrator for exercise. I can’t seem to get enough oxygen from a lightweight POC. The tanks allow me to walk briskly and even do a little hiking, while with the POC I feel short of breath if I exert myself too much. Plus it’s noisy.

        • #35844
          Jen Cueva
          Keymaster

          Hi @catbrown, I love that backpack. Did you get the purple one? I know that some have trouble getting enough air with the POCs. So, I’m happy you’ve found a bag that works well for you.

          I need a new backpack soon. I noticed on Saturday when riding my E-bike that the old backpack I use while biking is starting to rip at the top.

          What areas have you enjoyed little hiking trips? That is one of my long-term goals.

        • #35851
          Mike Morriss
          Participant

          Thanks!  Looks GREAT 🙂

        • #35843
          Jen Cueva
          Keymaster

          Hi @n5jjr, thanks for sharing some more information about your wife Andrea’s oxygen tanks. I’m surprised they do not carry the smaller tanks or can order them for her because they would be lighter to carry. Since she is on 2 liters and using a conserving device, she would probably do well with the smaller ones.

          As far as the home-fill, my home-fill machine fills all of my various-sized tanks, and the conserving device should do the same.

          You shouldn’t have to pay extra for the smaller tanks. So please let us know how the DME (oxygen company) responds to your requests. I’m just thinking about what will make life a tad easier on her since she needs the oxygen 24/7.

        • #35852
          Mike Morriss
          Participant

          Thanks!  I’ll let you know what I find out about getting smaller tank(s).  We might just decide to swap out our ML-6 for an M-4 or an M-2.  Our supplier may be willing to order one of those and do the swap-out at no cost to us.

        • #35855
          Jen Cueva
          Keymaster

          Hi @n5jjr, I hope that will work better for your wife, Andrea. How is she managing otherwise?

          Take care and do keep us updated.

      • #35841
        Jen Cueva
        Keymaster

        Hi @ripple76, like you, if the kinks continue, I usually will switch tubing. Manny used the dryer with a few towels on mine, which seems to help. If you try it, let us know how it works.

        You are certainly not alone in these kinking episodes. Also, when using the swivel connectors helps.

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