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    • #33954
      Jen Cueva
      Keymaster

      New forum member @lovenox wants to know about those who use a BIPAP machine at night. Her problem is that she doesn’t maintain a stable CO2 level. Do you use a BIPAP Machine? Did your doctor or respiratory mention that you cannot retain your CO2 levels?

      Deborah also asks about getting into a swimming pool with oxygen. I mentioned how we used multiple long extension tubing so that I could get into my collection in our previous home. This year, it would need to be a postable small tank with a ling tubing or a solution to using my POC when I make a trip to the community pool. I hadn’t thought of this question until now. But do know some use a portable tank on a floating device near them in their collections.

      Do you swim with your oxygen? What tips can you share with Deborah?

    • #34015
      Cathy Brown
      Participant

      @jenc, I found this “oxyfloat” product online but have never tried it. It looks kind of like a little life jacket for your tank. https://oxyfit.net/

      Now that we live in Phoenix we have a pool, so I am going to have to figure this out. We were thinking today maybe I could move my indoor concentrator close to the backdoor and have the hose go out through the doggie door flap. Then string together enough hose to get to the pool. My husband was swimming laps the other day and I was feeling so jealous. It doesn’t seem like you could really do laps, seems like the tubing might get tangled. But maybe? At least you could splash around. I’ll try to remember to give an update once I try it out. Our pool isn’t heated and I haven’t been quite brave enough yet.

      • #34635
        Vanessa Vaile
        Participant

        Wow!  Cathy, this makes my day… and maybe my whole summer!

    • #34639
      Jen Cueva
      Keymaster

      So Cool, thanks, @catbrown; I know others will appreciate this share, too, especially now that the temps are starting to creep up. How are you doing this week?

      Our stranger, @vanessavaile, popped in to say how this made her summer! Hi @vanessavaile, how have you been? Are you happy to see the warmer temps in Colorado?

      • #34647
        Colleen Steele
        Keymaster

        @vanessavaile update:

        I am doing well, down from quarterly trips to the Denver PH specialist to bi-annual. Numbers good — low risk level and don’t need oxygen indoors resting or for mild exertion — and even short bouts of moderate. It’s good to get off the leash. Last Denver visit I walked farther on 3 l/m flow than the time before on initially prescribed 4 l/m and teleheath appointment with Dr George this month. Negotiating a lower Uptravi dose is on my wish list.

        Otherwise I’ve busy locally and online, still walking everywhere too.

        • #34654
          Jen Cueva
          Keymaster

          Hi @colleensteele, thanks for sharing @vanessavaile’s update. Vanessa, I’m so happy to hear that you’re doing well. Any time we can get a break from that oxygen “leash” is excellent! WTG!

          I’m crossing my fingers that on your next visit, you can decrease your Uptravi. Keep staying busy and walking; you are doing fantastic. Thanks so much for the update. It’s great to see you post again.

      • #34648
        Cathy Brown
        Participant

        @jenc, I am doing great and I have to tell you guys about it because no one else will understand. I haven’t actually tried the oxyfit yet cause I’m trying not to spend money. I’ve tried a few things in our backyard pool (which is such a luxury, I feel like a rich person though we’re definitely not, it’s just a phoenix thing). We’ve tried taking my concentrator outside and plugging it into a patio outlet, then stringing the 50-foot cord to the pool. I was nervous about pulling the machine in the pool and electrocuting us all, so we put it behind a heavy canoe so it couldn’t move. It worked ok, but the tubing didn’t quite make it to the far end of the pool. I’ve honestly been nervous about being in the pool at all. At first, it was really cold (it’s not heated) and I was like what if I have a heart attack from the cold water shock. This is how paranoid about my health I’ve become. So I just got in really slowly and splashed around. Then the next day or so, I did a couple of strokes of front crawl. Then a little elementary back stroke. I was just really nervous for some reason. This week, the water has warmed up a lot and we tried bringing out a tank with a 50-foot hose instead of the concentrator. I don’t know why, it just seemed a little less hassle. And I swam! Like really swam, several laps of freestyle, blowing out underwater and breathing to the side and all that. With my cannula in. I fricking swam! I can’t believe I was doing it again. I got slightly tangled in the hose, but I could tell what was happening and handle it. I would never do it without my husband or son around to make sure I was safe, but it felt like such a triumph. I used to love swimming and there I was doing it again–cannula and all!

        I have never thought of myself as a particularly strong person, a “fighter” as they say. But I was thinking I didn’t learn to swim until I was 25 because my parents couldn’t afford swim lessons. And I went to swim lessons and more swim lessons and more in my late 20s. I just kept trying until I got it. And now, I have this stupid lung disease and the tanks and the cannula, but here I am swimming again! So I’m more resilient than I give myself credit for. And lucky that I’m still well enough to do it and have a pool.

        • #34655
          Jen Cueva
          Keymaster

          Wow, @catbrown, you certainly are a PHighter! Give yourself more credit, my PHriend.

          Your post made me so happy; I had happy tears reading it. I know how nice it was to get in the backyard pool that I now miss. Hehe.

          We do what we can and try different things to see what works. That’s how we take control and figure out ways to do things that we enjoy. I’m stoked you could swim laps, feel much better about yourself, and enjoy something you’ve wanted to do.

          BTW, It’s not a luxury in Phoenix; it’s more like a necessity, right? LOL.

          I’m so proud of you for stepping outside your comfort zone and swimming. This must have made your son and husband so excited and proud of you, too. Now, enjoy that pool and keep us posted on how you’re doing.

          This is such a summer win; kudos to you. I’m sending you much love, hugs, and cheers from here.

    • #34640
      Vanessa Vaile
      Participant

      Warmer is better, especially without high winds we get on the High Plains — over 22 mph/gusting above 30 mph gets in the way of walking. I literally got blown over one day walking back from an appointment at the district hospital. A winter fall without ice! That said,  extreme summer heat interferes with walking out more than cold. I can always add another layer — the reverse, however, is not true. As someone who grew up in south Louisiana, I appreciate not having to cope with the”feels like” factor of high humidity.

      • #34649
        Cathy Brown
        Participant

        @vanessavaile, I totally know what you mean about the heat limiting your ability to walk. I used to love living in snow country because you really could be out almost any time of year if you just put on enough layers. Now we’re in Phoenix and you have to get up VERY early in the morning to walk this time of year and it’s still not that comfortable. The lack of humidity helps a lot, although when we hit 114 it’s just insane. So glad we have a pool now.

      • #34656
        Jen Cueva
        Keymaster

        Hi @vanessavaile, I didn’t realize you grew up in Louisiana. Yes, ma’am, summer heat and humidity can be brutal, especially the “dog days” of summer.

        I prefer mild-warm temps because the cold air burns my lungs, making breathing difficult. Do you find that or now there?

        I am happy you’re walking and enjoying some freedom from your oxygen at times. What a wonderful feeling!

    • #34645
      Colleen Steele
      Keymaster

      Oh my goodness @vanessavaile I nervously laughed when you mentioned the high humidity in Louisiana. My youngest son just moved there and he is struggling to adjust to the heat. Quite a difference from the WA state weather he is used to. And guess what his job is…roofing!

      Thank you for sharing your experience. Glad to see at least one post went through for you!

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