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    • #12762
      Donna
      Participant

      I have been on oxygen almost continuously since April, which has not been an easy transition! For those of you who have been doing this a while, can you give me a few tips?

      -How do you keep from stumbling over long, coiled tubing? I haven’t tripped yet, but I suspect it is coming. Myself and my husband trod right over the tubing, but when my kids and grandkids are around, I can have 20 people all trying to avoid my tubing. I’m worried about them falling, and it’s obviously uncomfortable to have it ripped off my face, as well. I tend to get frustrated and just take it off, to a cacophony of people saying, “No, Mom/Grandma, put it back on!”

      -Do you have a specific type of nasal cannula that you’ve found the most comfortable? I recently changed oxygen providers, and had Salter soft touch cannulas with the previous provider. This provider carries a different brand, which is much less comfortable, but when I look at Amazon to see if I can order the Salter cannulas, it says I have to have a license to order them. Any suggestions?

      -Do you cook with your oxygen on? If so, is it safe? Is there some type of cooking you do not do? On days when I have enough energy to make dinner, I’ve opened a hot oven and realized that’s probably not a good idea! I love to cook, and have a large family, so if I ever see an improvement in function I’d really like to cook again.

      -How has it been to travel with a POC? I have an OxyGo, and my provider keeps the dual-battery travel model to lend out for trips/overnight stays. I have been reading some of the articles about airline rules/procedures. Has anyone worked with United? Right now I’m not in great physical shape, and the thought of travel is exhausting, but at my age, and with a serious, progressive disease staring me in the face, I hope to make one more trip to the UK/Europe. My oldest daughter will go with me as a travel companion, hauling bags/compressor and so on, and I am determined to make that work somehow! I am taking a short overnight road trip later this month, which will be a good trial run.

      Maybe a couple of less practical questions:

      -How often do you check your pulse ox while you’re wearing your oxygen? What kind of numbers do you aim for with 02 and HR? Do you “experiment” with the pulse ox without your oxygen on? I’m not “prescribed” oxygen 24/7, just with exertion, but that’s another question…I don’t (well, didn’t used to) just sit around much, and if I do, I’m up and down quite a bit. It’s obviously not practical to put it on and take it off over and over again. Do you just find yourself keeping it on to make life easier?

      -I appreciate your advice, Brittany, to monitor symptoms to keep track of how my body is responding throughout the day. Have you noticed that your sats can look good, HR can stay reasonable, yet you’re exhausted, breathy with speaking, or experiencing chest pain? I do see this later in the day, and am learning how to read the oncoming fatigue/symptoms. Do you experience the brain fog even if your sats look good?

      -Lastly, do any of you find your oxygen sats go down when you lie down? I expected them to rise, although I know many of us (myself included) require oxygen at night, while sleeping. I can go down to 81-82 just lying down while awake, at times. My pulmonologist thought perhaps if the heart isn’t pumping efficiently, position changes change the way the blood pools. I suppose once I have the right heart cath, I may get an answer to that.

      As soon as I recovered enough from my initial illness to become more mobile, oxygen felt like an enemy…frustrating, embarrassing, inconvenient. At some point, though, when I realized how I felt with it, and how much more I could do, I had to turn a switch in my head and consider it a friend. That helped me accept it, and now I’d like to figure out how to make it work. Thanks!

    • #12772
      Brittany Foster
      Keymaster

      Hi Donna,
      I can’t stress enough that you are doing all the right things by asking these questions! I’m glad that you have learned the lesson that wearing the oxygen makes you feel better than not wearing it at all. There are so many days where it is hard for me to accept that I am on oxygen and on these days I rebel and take it off. At the end of the day I am stuck with a pounding headache that is way worse than the ones I get that are more manageable when I am actually wearing it and doing what I am supposed to. As you probably know, oxygen helps more than just the lungs!

      I have smaller tanks that I use and am able to carry in a backpack when I have guests over. It is a chargeable unit that I have so I am able to recharge the oxygen tanks as needed and use this along with the backpack and small cord when I go out of the house. I have he longer cord at home and it reaches across my apartment because I have a long cord with an adapter that plugs into the cannula hose. Some people have used carpet tape that works by sticking to the cord and holding it down so it doesn’t get as tangled but I think that would kind of limit where you can go in the house. As far as when others are at your house, I would try using larger tanks (ask your oxygen provider for these) and put them in something that you can wheel. They usually give you a wheely that you can pull and that has either one or two spots for the oxygen. That way when there are a lot of people over just wheel the oxygen instead to avoid people tripping and it pulling!

      Also, maybe you can ask your doctor about ordering some of the cannulas. Sometimes the cardiac and pulmonary wings in hospitals also are willing to grab you a few of the softer ones. The hospitals here have really soft ones on their cardiac and pulmonary floors. So maybe a visit to one of these wings and just asking would be good or if you have any friends that work in hospitals that could “steal” you some! lol!

      I cook with my oxygen on. When I open up the oven that is very hot, I take the oxygen off my face and place is out of the way for a second and then put it back on. It is okay if you cord is around the heat, but I don’t like the heat going in my face with the oxygen on so I prefer to take it off for a few seconds while I get what I need to out of the oven. But don’t be afraid to cook with it! I know plenty of people who wear oxygen and love to bake !

      I have traveled with a POC and gone on planes. I would suggest calling United airline and getting a list of what they require from you before travelling on the plane with oxygen. They should have a list of the POC that are allowed on the plane and the ones that aren’t . They require a flight time and a half flight time of battery to make sure that you have enough. Test out the POC beforehand and make sure that the battery lasts as long as they claim it does on your specific setting. If the flight was 4 hours you would essnentially need the whole 4 hours plus 2 hours (half flight) worth of battery. So 6 total battery hours. I would travel with a doctors note stating your need for oxygen too just in case they ask for that! Plan ahead for you trip and call ahead of time. Places are willing to accommodate you!

      And yes, sometimes it is easier for me to just keep the oxygen on. If I am resting I put it at a lower liter flow between 1 and 2 and when I’m moving it is anywhere from 3 to 4 liters. Easier that way and I end up feeling better for when I am moving around. I still feel those symptoms even with the oxygen on, they are just less intense than if I didn’t have it on at all. Still get foggy and forgetful sometimes but not nearly as bad as if I wasn’t wearing it!

      I am here for you so if you have any other questions please always ask!

    • #12789
      KRISTINE
      Participant

      Donna,
      I am also extremely awkward with the tubing, so much so that getting from one room to another can be frustrating so I just throw the cannula down and pick it up when I return to that room. Mine gets caught on furniture, dogs lay on it, dogs stand on it, catches around houseplant planters, etc. etc. I have a extra 50 ft. hose that I extend to go out and work in the garden and do yard work outside.

      At first I was real self conscious, now I don’t have anything portable yet, but I am no longer self conscious out in my yard. I suppose I will be the first time I go to Walmart etc. I cook with mine on also.

      In the beginning, I’ve backed off a little now, I was almost psychotic with the pulse ox finger checker. OMG I was checking mine at all different times of day, activity levels, etc. It’s strange that even with o2 on the highest my level has ever been is 93 and without o2 the lowest was 73.

      I’ve not ever noted, but will today, weather brain fog and memory is better with o2 on.

      • #12807
        Brittany Foster
        Keymaster

        Hi Kristine,
        I can relate to what you’re saying ! I’m glad you are still able to get outside and do some yardwork! Stay as productive throughout the day as possible. Still figuring out what I CAN do has helped me so much and helped me find more relaxing hobbies!

        It’s amazing that there really is a difference in how we feel. I remind myself, that even if my oxygen was only in the 80s with the oxygen on. It would just be way worse without it on. Yesterday I had it off for a little because it ran out and just within the hour of not having it, my o2 was 65! I felt terrible ! It was a good reminder that even a difference in increase to 83 feels so much better !

    • #12791
      Donna
      Participant

      Thank you both for your answers! I do think I will use my portable when the family is all here…especially the smaller grandchildren. Kristine, I have one desk that constantly snags it, cat plays with it, dog chases it, etc. I’ve discovered all the door handles and hooks I can hang my cannula on when it gets frustrating! I’ve got a portable concentrator that I’ve taken out shopping or to restaurants…just takes a little getting used to. It almost looks like a purse, but of course the tube in the nose is a bit difficult to disguise. Breathing is so nice, though!

      I don’t need a lot of oxygen–a couple of liters–but when I am having a good day (like this morning) I tend to push through without it and then crash (like the rest of today). Lesson learned.

      Thanks again for your responses. If I come up with any clever ideas, I’ll share them 🙂

      • #12810
        Brittany Foster
        Keymaster

        Donna,
        I can relate and do the same thing with my oxygen on my good days or when ai start feeling good. I need to remind myself, i feel well BECAUSE of the oxygen! Lol! I try to say “if you feel good, stay feeling good and wear the darn oxygen!” . It’s the sure way to make that feeling last longer ! 🙂

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