This topic contains 27 replies, has 5 voices, and was last updated by  Brittany Foster 6 months, 4 weeks ago.

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  • #14820
     Brittany Foster 
    Keymaster

    I remember three years ago when I first got put on oxygen. It all felt like a big blur as I left the hospital. I was given an oxygen concentrator, tubing,and a few large tanks to use when I was out of the house. After the respiratory therapist left and after my equipment was set up, I can remember crying for an hour and letting out all my emotions.

    Even though I knew that the oxygen would help me for the better, it was still very emotional when given this new equipment that was now a part of my life.

    I wish I knew that it was okay to feel upset and emotional about such a big change. I also wish I knew to speak up about my physical ability and let the doctor and respiratory therapist know my activity level during an average day. The few tanks they gave me wasn’t enough for me. I had to have my doctor prescribe an at home filler for the smaller oxygen tanks and I had 3 small ones given to me that I still charge each day to use when I go out.

    These are only a few things I wish I knew. What advice could you give for someone getting oxygen delivered to their home? What are some tips you have regarding tubing, keeping it from getting tangled? What advice do you have on oxygen size tanks to have for going out, etc ?

  • #14824
     Vanessa Vaile 
    Participant

    Synchronicity… just as you were writing this, I was getting set up with my first home oxygen. Concentrator for home us and a selection of tanks in three sizes.

    Nothing for night oxygen with CPAP. Dr ordered oxygen without mentioning that I was on one. Seems like an oversight. If not inadvertent, I wish someone had told me. For now, I’ll oxy up all the way to bedtime, turn it off, mask up for the CPzzAP and see what starting with higher saturation numbers do for my numbers. I’d need a different mask too.

    Big changes — part and parcel of past few weeks — not coming the same time all at once but one after the other. It runs to the overwhelming, but, at the same time I am very glad to be breathing better for the first time in a very long time. Still processing.

    PS I sure could use that advice on tank sizes for going out.

    • #14827
       Brittany Foster 
      Keymaster

      Hi Vanessa,
      I was just talking with my therapist today about feeling overwhelmed when there are changes in treatment even though it’s a good thing at the same time. Take it one small step at a time, it’s a lot to get used to at first but I know you are on top of your health needs and are doing the right thing. I use a ventilator machine (use to be bipap) with the oxygen too and my company for the machine (vent machine) gives me a piece that plugs onto the mask and there is a hose that attaches to the oxygen concentrator and plugs onto the mask. I would ask the company (both cpap company and oxygen company about this adapter piece).

      For going out, I find it best to use the smaller tanks that can be filled at home (as your doctor and your oxygen provider about getting a home filler system). The smaller tanks I am able to fit in a backpack when I go out. Depending on what I’m doing though, I actually find pulling the larger tanks in a carrier a lot easier especially easier on my back muscles and bones! I get sore after carrying the smaller oxygen tanks around on my back (it adds an extra 5 lbs or so). I would see if you could get both sizes and see what you like using best! The good thing about taking the larger ones is that they have a pretty good time limit on them. Each one lasts me about 4 hours each on 3 liters. The smaller ones last about 2 hours.

  • #14852
     Margie Novak 
    Participant

    Wish there were suggestions on how to deal with the green tubing!! My tubing gets caught on things and I am pulling it or stuck under doors or else my cat plays with it. When I get showered I feel the water is running down the tubing and outside the tub. Not a pretty picture. Plus, I don’t know about others, but my concentrator can be so loud I have to put it as far away from the living room as possible or won’t hear t.v. I know I need the oxygen but…. sometimes dealing with the tubing and the nasal cannules can be a real pain!! take care all and have a Blessed Thanksgiving!!!

    • #14899
       Vanessa Vaile 
      Participant

      Margie, I can identify your cat and air hose issues! Cold and snowing here today so I tried a timed walk around my small apartment — way too entertaining for the cat.

  • #14863
     Robin Taylor 
    Participant

    Hi all! (And a special Hi! to Brittany…thought of you last night during the CMA’s and J.A.’s performance! ❤️‘d it!!!)

    This has been my hardest thing to adapt to. I was diagnosed last September and put on 5L continuous 24/7. First thing I need to tell all newbies…it gets better and easier! As you get the hang of O2, it becomes 2nd nature or as people say your “new normal”. On to the nitty gritty. As Brittany described her experience, mine is very similar. Probably my biggest nemesis is the big green tube. Wrangling it the beginning was sooo frustrating. I have two large dogs and three cats, so getting them adjusted to it was rough. One dog was scared of the tube and concentrator noise for months, the cats wanted to play, chase and bite it (I went through many tubes in the first couple months) and the other dog liked to lay on (to keep track of me and to “possess” me in normal dog behavior). So, I became even more aware of the green tube following me. I had a big fear of tripping over it and everyone else was afraid to step on it, thinking it would harm me. I learned to dress over the cannula(bra and tops)and I wear it 24/7 cinched BEHIND my head. I cannot stand things tight to my throat. The only negative to this method, is having your head pulled backwards like a horse bridle if if someone (usually a dog, lol!) steps on it. Then I loop the hose in my left hand as I move through my house. I’m on a 40’ hose so I can go just about anywhere in my house. Two things I think are critical to the hose and concentrator is 1) a bubbler to keep the oxygen from drying out your nose membrane and 2) a swivel connector between the hose and the cannula. At the end of the night, I usually have to untwist the tube so it doesn’t twist and kink. Make sure it doesn’t kink as it will cut your O2 flow drastically. It takes awhile but everyone gets use to it. Also, don’t even attempt to use a corded vacuum when on your green tube…throw on your backpack (see below)! (Ask me how I know…tears and yelling were involved)

    O2 away from home:
    I have tried a POC (Portable Oxygen Concentrator)only, liquid O2 tanks only and a combination of the two. For my flow needs the best solution is a O2 tank, set at 5 or 6 Pulse in a backpack carrier (Amazon) for activity, shopping and light walking. It can go up to 4C, if I need it. Each tank lasts 3-4 hours. I have a POC that I keep in the car for backup and travel. It can go up to 6P which is fine for sitting, but POC O2 isn’t as pure as liquid so it isn’t enough if I’m moderately active. My insurance would not pay for both, so I had to purchase my own ($2,500). I go through 6-16 tanks a week depending on my activity.

    And finally…exercise:
    I need 10 Continuous flow to workout. By workout, I mean walking at a 2mph pace for 10 minutes(that is my best so far, I try to increase my distance a little every week). I use a high flow concentrator at Pulmonary Rehab and a big liquid tank at home.

    Well, that’s all my insights! You can do this! Remember, it’s our best medicine.❤️

    • #14864
       Margie Novak 
      Participant

      Robin, thank you for all this information. It was wonderful to read and to hear that you are doing well. How long have you been dealing with pulmonary hypertension? Just curious. Also, I don’t know if anyone else knows the answre to this but my respiratory therapist told me NOT to put a lot of green hoses together because you will not get enough oxygen it decreases with how much tubing you have. Has anyone else been told this> Take care all and blessed Thanksgiving!!!

      • #14867
         Brittany Foster 
        Keymaster

        Hey Margie,
        Yes I have been told that too. One of the things that I do is turn up the flow rate when I have more tubing. So, if I’m supposed to have 3 liters I put it up to like 4.5 on the concentrator when it has to get through all the tubing. Usually that ends up being equivalent and my sats stay okay. Not sure if you’re able to turn yours up or not but maybe experiment with how much o2 it gives you with the tubing and test your sats to see what it needs to be at on the concentrator when it has more tubing.

      • #14877
         Robin Taylor 
        Participant

        Marjie, I was diagnosed last September, so just over a year. The hose I use is a 40 foot high flow. The flow matches what I set on the concentrator. I have a flow meter that I put on the end of the hose to check the volume. When I had the problem with the cats biting holes in it, my O2 guy gave it to me to detect low flow from the holes (little tiny holes brought the flow down to 1L!!!). It’s a handy little tool that looks like a pen but has a gauge inside it. It’s come in handy a couple of times…I’ll feel I’m not getting enough O2 and check the meter, then I’ll start looking for the problem. Sometimes it’s a kink I didn’t see and more than once the O2 stopped flowing after I added water to the bubbler (mineral deposits in the humidifier tube so now I only use distilled water). It really helped in the beginning with anxiety of not getting enough O2, now I’m better reading my body’s signals. Hope this helps!

      • #14886
         Brittany Foster 
        Keymaster

        Robin,
        this is really helpful info and I never even heard of this gadget to use with the oxygen to measure it ! Usually I can tell based off of how it feels in my nose if I am getting enough oxygen through it or not, but sometimes my body doesn’t even feel the oxygen going through because it’s like second nature having it on. I’ll have to look into this too!

      • #14894
         Robin Taylor 
        Participant

        I really think it helps. My O2 guy is really helpful and has answered or solved so many issues when I started on O2. I know it’s a little weird, but I also can check my flow by sound. I guess because it’s such a constant, I can tell when it’s off or with pitch change it’s low. I have woke up several times from a sound sleep, and realized either I’ve rolled over and disconnected my line or the cannula has come out of my nose, just from the lack of sound, lol! Amazing what we get used to!!!

      • #14895
         Brittany Foster 
        Keymaster

        I know what you mean by the noise it makes !! When i go to my PCP she makes me laugh because she will be like “let me see your oxygen cannula” and I have to show her it and prove that it’s on lol! When I first got it I never wore it as I should have so she lost all trust in me. But it she listens to it she can tell what level it’s on!

    • #14865
       Brittany Foster 
      Keymaster

      Robin,
      You know how I love my Jason Aldean! I just finished watching it actually and I loved it and can’t believe Carrie is having a BOY! I thought it was a girl for sure!

      Thanks for all of these tips. The tubing was such a hassle for me in the beginning too. And you’re right that people try to dance around the tubing not wanting to hit it or they end up sometimes complaining about it almost tripping them. Sometimes I’m like “I’m the one attached to the thing and can’t do much about it!” . Usually if there is a larger crowd like there will be on thanksgiving I just take a few large tanks with me instead of having the cord all around the house.

      I have found the same issue with a POC, it doesn’t work well for my needs. If I could use a pulse flow at a lower setting that might work better, but I can’t so I stick to the backpack and tank or pulling the larger ones when I need it to last longer.

    • #14900
       Vanessa Vaile 
      Participant

      Thank you Robin for this — very useful for someone in the early stages of figuring all this out. Concentrator, 40 ft hose, 3 tank sizes to try out — on low setting but no instructions or guidance on how to use or how many hours a day. I assumed I’d be on it at night with CPAP, but no one told the supplier. He was out of shoulder bags for the smallest but will bring one Tuesday (next day he is in Yuma).

      For now, my question is — which oxygen tank backpack on Amazon? I bookmarked the Vaunn.

      • #14904
         Robin Taylor 
        Participant

        Hi Vanessa! When I ordered last year, I ordered a different one that I did not see when I checked Amazon this morning. I went with the least expensive one listed, because I wasn’t sure if I’d like it. It was probably a mistake…I use it all the time and I started seeing wear in a couple of months. The Vaughn one looked sturdy and well built. I checked for a side grommet for your cannula and it has one. That’s important, because my cannula hose kinked if I used the grommet on top. Good luck with your backpack! I love the mobility it gives me…especially when needing both hands free activities like vacuuming, gardening and shopping. I even wore it into the ocean in September! (Something I never thought I would be able to do again!)❤️

  • #14923
     Vanessa Vaile 
    Participant

    Robin, the Vaunn backpack I ordered should get here tomorrow. I’ll review it. The middle sized tank also fits well in my shopping/laundry cart. The large one should as well but might take more thought.

    My next medical/industrial complex challenge is to get a CPAP mask with oxygen fitting or an adaptor for my CPAP hose. Some days those challenges feel like they are are straight out Catch 22.

    • #14928
       Brittany Foster 
      Keymaster

      Vanessa,
      I would reach out to the oxygen company and cpap company asap to see if they can get that to you. It’s a simple plug in that most of the time they have in their van! Keep us posted because I’m sure WItH the o2 it will help you even more.

  • #14934
     Vanessa Vaile 
    Participant

    Brittany — done and on the way. I called my cpap provider, who told me she couldn’t order me the mask with the oxygen connection built since pcp ordered it from a different supplier, told me I could get a hose plug from the oxygen people. My request for oxygen from the same source as my cpap went unheeded. I’ve been learning that suppliers and techs are often more helpful and willing to share information than doctors and staff. Usually easier to get a hold of too.

    • #14943
       Brittany Foster 
      Keymaster

      Vanessa,
      I’m glad you got in touch with the right people. The techs and respiratory therapists are great! I have many of their personal numbers too.

  • #15569
     ronald cole 
    Participant

    I Get my oxygen through my CPAP Machine at night.

    The very first night, I cranked up the Machine and expected some Miricle to happen.

    The Big Box started to whistle, chug, snort, crank and I thought the damn thing was going to blow up, I turned it off and took a tranquilizer.

    • #15573
       Brittany Foster 
      Keymaster

      Ron,
      That sounds like a very disturbing machine. I have a bipap but it is a very quiet machine. Have you received any other machines since that aren’t as disruptive to your sleep?

  • #16355
     Margie Novak 
    Participant

    Greg, first I have to say you are doing awesome on oxygen if you can wash your car!!! WOW! No matter how long it takes you. That is such a big job for someone on oxygen. I too use the HUGE cylinder) called E tanks. I was on the small tanks (C) but I am now on 8-10 liters of oxygen So when I go to the grocery store I have to put my tank in the cart and push it around with me. I get looks but don’t care. I try to do it. I may come home tired but… I am proud that I did it. It is hard to use oxygen that high. It comes out of noise and I can hear it all the time. But I have to do it. I hope you hang in there. Again, you are doing awesome!! take care

    • #16358
       Brittany Foster 
      Keymaster

      Margie,
      I always love to see your words of encouragement on here. Even though they’re not direct comments to me, it’s still so uplifting to see the support on these forums and the positive words from our members like you who are our “cheerleaders” through all of this. It’s true that when we stop to think about all we are accomplishing (even if it seems small) we should still celebrate that as a victory. 🙂 thanks for making me smile today.

  • #16348
     Brittany Foster 
    Keymaster

    Hi Greg,
    That must be hard. I know that it is difficult when you can’t use the smaller POC because of the liter flow that you’re on. I have the same problem with being on continuous flow and the POC running out too quickly. I have heard of people using an oximizer but I’m not sure of the exact benefits of it. Do you carry around a bunch of oxygen tanks with you when you go places?

  • #16362
     Brittany Foster 
    Keymaster

    Hi Greg,
    I am not on that high liter of a flow and I don’t need it when sitting down but when I travel and go away on mini trips or weekend trips I bring lots of large oxygen tanks and request them a couple weeks in advance from the oxygen company. Another idea so you don’t have to lug around so many tanks in the car would be to see if wherever you’re traveling to has a delivery oxygen service and if your oxygen provider could work with a company where you’re traveling to in order to get more refills delivered to you each day. Or if you have a charging unit for the smaller tanks I would just bring the whole unit with you if you could! I know it seems like that whole concentrator and charging unit would take up a lot of room but so would 20 large tanks ! But the first step I would take would be to ask the oxygen company if they have someone in another state that they work with that would be able to deliver you tanks.

  • #16363
     Brittany Foster 
    Keymaster

    Hey Greg,
    yea I have only talked to a few other people that use it but it looked smaller than hockey puck size so maybe I’m thinking of something else ! I’m sorry it caused you discomfort though when you tried it out. That must have been a bummer especially if you though it would help to make the oxygen last longer.

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