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    • #27921
      Sharon Hellman
      Participant

      My respiratory therapists agree I do better on portable continuous Oxygen tanks rather. Than pulsed (i.e. Inogen). Due to insurance I can only have one. I want to try carrying around a size D tank before I give up or pay For the Inogen myself. Has anyone else made this decision? Would love to hear about using D size cylinder with a backpack. I am currently using 3litres

    • #27926
      Jen Cueva
      Keymaster

      Hi @sharon7651, great question. I am NOT on continuous oxygen. But I do have an Inpogen and also have smaller portable tanks that I carry in my backpack. I am on 3-4 liters. I use a conserved on my M tank that is in my backpack. With that in it, it only allows me about 2 hours of use. The D tanks are larger, and because your RT said you would do better on continuous versus pulse, the D tanks would probably last at max 2 hours. Have you tried to see how long one lasts?

      I know that several here have also mentioned that they do better on the tanks versus the Inogen. I would certainly do more research and see what works for you before shelling that money out. Is there a way you can rent an Inogen from your O2 supplier for a few days to see if it may work? I would suggest that. I rented a portable oxygen machine from my O2 supplier to travel when I tried it out.

      The Inogen is a little lighter to tote with me than my small M tanks, but the D tanks will be a tad heavier than the Inogen. Let me know if this helps, and also, some others should chime in about their experiences.

    • #27927
      Linda Brandt
      Participant

      Hi, Jen, This is Linda Brandt and I have used tanks but I now have an Inogen G4, which I prefer over tanks. I can count on it providing O2. I was put on oxygen on December 1, 2017 after enduring that blood test from hades when in the hospital with suspected Bradycardia. I suspected it after monitoring my heart rate with my oximeter. While there, they did a Cat Scan and found a blood clot somewhere, and after reading the results of that, put me on Xyrelto. (pricey!).

      how I got on O2? Somehow, oh yes, the ABG test. They found that I had low blood oxygen level, so here came a medium-size tank into my room and I was introduced to a life of wearing O2. They are too big for a backpack so it was in tow. But, after a few years of that and arriving at a service on a Friday evening towing an empty tank, I decided I had had enough of tanks, both empty and filled, so with a surprise gift from my Mom one Christmas, I ordered the G4. It’s pulse 1-3 and I love it. Now, I see (?) my Pulmonologist next year, and I’ll see what he thinks about the Inogen pulse vs the tanks. Oh, by the way, Inogen has come down in price since I bought mine.

    • #27952
      Jen Cueva
      Keymaster

      Hi @hamjam43, thanks for sharing. I also know that the Inogen’s have come down since we purchased mine, too.

      Ughh, the dreaded ABG. I had one painful experience with this and have hated them since hehe.

      Yes, those large tanks are such a hassle to lug around when you are struggling to breathe as it is.

      I think that if you are doing OK with the Inogen, it is working well for you. Some notice that that have better results with the tanks. We are all different, so personal preference counts, too. These are to help us not hinder our lives anymore.

      Do you mention blood clots, is your PH caused by blood clots? Were you a candidate for PTE surgery? I hope that you are staying well.

    • #29230
      Jen Cueva
      Keymaster

      Hi @sharon7651, how are things going with you now? Have you found an oxygen source that works best for your needs?


      @hamjam43
      , how are you doing now after the blood clots? Are you still taking Xarelto?

    • #29238
      Teri Lewis
      Participant

      Hi!

      Currently, I am on 6 liters of continuous oxygen at rest and 8 liters with exertion. Does anyone know if there is a portable concentrator that has continuous flow at 6 liters? I have an Imogen One G3 that is a pulse flow up to 5 liters which isn’t enough oxygen. I have to change my e-tanks every 45 min….so I would love to find a battery-operated portable with continuous flow for ease in transport.

      Thanks!
      Teri

      • #29243
        Jen Cueva
        Keymaster

        Hi @terilewis,
        Thanks for your update. I that the Sequal Eclipse offers the highest continuous flow. When I had one, it was bulky, used, and not updated. That was 5 years or longer. I am unsure of which others are available. It seems like someone could make a POC specifically for high flow continuously.

        I know my Inogen batteries don’t last long, and I am on 5 liters currently. I am hoping to eventually get back to 3-4 liters as I was pre-COVID.

        Otherwise, how are things going for you?

    • #29239
      Colleen Steele
      Keymaster

      @terilewis that is a good question. I hope one of our members can advise you on this. When my son’s flow increased to a high number there were no portable concentrators that could provide what he needed, but that was over 6 years ago. Plus he was a pediatric patient and options for them are far less.

    • #29275
      Sandra Greenberg
      Participant

      I have a question, what do you all on O2 do to keep your noses from being sore? I’m on 5 continuous. I’ve used Ayr, Xlear, saline spray, and Flonase. My nose is always stuffy and sore. I was using water between my concentrator and line but my line that I drag around my house is 100 ft. so the humidity doesn’t seem to help.

    • #29277
      Colleen Steele
      Keymaster

      @zoemama excellent questions. I know this is a problem that many experience. Here is a link to a previous conversation about this that might help you. https://pulmonaryhypertensionnews.com/forums/forums/topic/do-you-use-a-humidifier-with-your-home-oxygen-concentrator/

      Here is a link to what is available through Amazon. I don’t have personal experience with the products listed but maybe other members can provide a review of a few of them. https://www.amazon.com/nasal-moisturizer-oxygen-users/s?k=nasal+moisturizer+for+oxygen+users

      And here is a link to an article I found. It sounds like you are doing much of this already but maybe there are a few things you haven’t tried that you will find helpful.
      https://blog.lptmedical.com/how-to-make-supplemental-oxygen-more-comfortable

    • #29283
      Jen Cueva
      Keymaster

      Hi @zoemama, @colleensteele offers some excellent resources. I also have 100 ft of tubing and use a humidifier bottle. I am now on continuous oxygen, so even use my Ayr gel, I have not found anything that helps a ton.

      I am also on 5 liters, but the Ayr and saline spray is not as much help as I would hope. I wish I had better answers; I often get nosebleeds too. Thankfully, they are not as bad as when I first got back home.

      I did not realize that Amazon had so many options. I want to remind you to be careful if you see Afrin and other nasal sprays containing decongestants. Most of us with PH are told to stay away from decongestants.

      If you do find any new tricks that help, please do share. In the meantime, I use what I have to help in some little way.

      • #29303
        Colleen Steele
        Keymaster

        Thank you @jenc and @mendo-bruce for sharing your experiences and important reminders! Jen pointed out the decongestant concern. I should have added to discuss any kind of products with your doctor before making a purchase. It goes in line with what @mendo-bruce said about what works for one may not work for another. Same is true in regard to, what is safe to use for one person might not be safe to use for another.

    • #29290
      Mendo Bruce
      Participant

      1. The Sequal is still the most oxygen available in a portable (3lpm). There are one or two other brands that also output 3lpm continuous but they all are bulky and weigh 18lbs+ like the Sequal.

      2. NO pulse only machine outputs more than 1.2 lpm, No Inogen or any other brand! The numbers are NOT liters per minute! Some people can stay saturated with a pulse bolus, but many can not. If you are dropping into the 80’s with your top exertion, you are not being kept saturated. You should NEVER have to slow down for your oxygen source.

      3. I have found a (new to me) spray for Oxygen induced dry nose. Hyalogic’s HYLAMIST. It is Hyaluronic Acid in a saline gel base. Hyaluronic Acid is used in skin moisturizers and wrinkle creams because it can absorb 1000 times it’s weight in water. This is in a saline solution designed specifically for the nose. BTW, there are currently clinical trials testing hyaluronic acid for COPD but don’t inhale it, just spray it in your nose.

      • #29299
        Jen Cueva
        Keymaster

        Thanks for sharing such excellent information, @mendo-bruce. I know that Sequal that I had years ago was so bulky and difficult for me to tug along, lol

        You also share an important reminder, what works for one, may not for another. I know some who say the regular old tanks are the only thing that keeps them saturated.

        I need to check on that spray. Did you purchase yours on Amazon? I will look and see if I find it. Thanks again.

        I hope that you are keeping busy and safe.

    • #29481
      Jen Cueva
      Keymaster

      I just wanted to share that I have been using, Hyalogic’s HYLAMIST. Thank you @mendo-bruce for sharing this with us.

      I’ve been using it for almost 2 weeks, along with my humidifier bottle. I have noticed less dryness and I’ve only had 1 nosebleed since starting this.

      This shows how sharing our experiences, we help others. I’m grateful for each of you.

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