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    • #23911
      Stephanie Mitchell
      Participant

      Question for those that use a home oxygen concentrator. Do you use a water bubble humidifier? I just had my flow increased from 2 LPM to 4 LPM and my RT recommended a water bubble humidifier for my higher flow rate. It seems to work as I haven’t had any instances of dried out nasal passages.

    • #23920
      Jen Cueva
      Moderator

      Hey @stephanie,
      I do use a humidifier bottle on my home concentrator. After the first few months of not using one, I started and it helps me. Otherwise, I do have dry lips and use AYR gel for my nose. It is sold at drug stores, Walmart, and I am sure online. Just a tip in case you need that in the future.

      I think the water bottle is used in most cases. In my experience, this is how most RT suggests that you use oxygen. I think it’s more helpful, at night for me. Hopefully, others can chime in with their opinion. Also, distilled water is preferred.

      As far as my POC, I use an Inogen and 3-4 liters.

    • #23926
      Alfred Gronroos
      Participant

      Hey @stephanie I use a bubbly water bottle on the home concentrator. Distilled water only and at the present it is hard to find. Altho the clerk at Safeway informed my wife the pharmacy carries it for those of us that need it. I use it in my bipap also. The cylinder that is on the canula gets under foot all the time. Life is a bummer at times. Right now not using the water but will probably will have to go back on it. I had the concentrator for 5-6years and did not know about the water until this winter at a friends . the water bottle and the AYR gel for nose. Life is a constant learning experience. Al

    • #23927
      Jimi Mcintosh
      Participant

      Thanks for sharing, I currently use a humidifier on my CPAP and it runs dry before sunrise and I awake breathing heated air, dry mouth, and dry eyes. I am getting a water bottle for my concentrator

    • #23944
      Jen Cueva
      Moderator

      Hey @alfredjohn, you are so right! Every day is a learning experience. I have had PH for 15 years and continue to learn tips and tricks from others within the PH community.

      It sounds like you notice a big difference when not using the humidifier bottle. Do you find that your nose is drier when not using it?

    • #23945
      Jen Cueva
      Moderator

      Hey @jimi, I am happy that you found a tip here that may help. The humidifier bottle certainly helps the dry mouth and nasal passages. Once you try it, please let us know what you think. Take care.

    • #23975
      Brittany Foster
      Keymaster

      Hey all,

      I didn’t know this was an option for the oxygen machines. But, I do use a humidifier for the BIPAP in the past and it really helped a lot! The one thing that I remember having to do though was get distilled water because it couldn’t just use regular water for it. It had to be the distilled kind used for medical purposes. I got mine at CVS in the big gallon jug. It lasted about 2 weeks I think. But, it definitely helped make things less dry and my mouth felt less dry and cotton-y when waking up! Did you ever feel cotton mouth and very dry without it? Almost like eating sand!

    • #24216
      Heidi
      Participant

      My daughter is almost 6, on oxygen for about 5 years. She has always used a bubbler. A few weeks ago we were inpatient starting a new med and they stated they no longer have bubblers in hospital because research showed they didnt work in bringing moisture to the nose. I said I have 5 years experience right there showing it does!!!! We were in a negative pressure room, plus it was still cold out in MN so dryer than dry and 2 of her meds that all was a possibility for nose bleed – Thank God she didnt.

    • #24218
      Jen Cueva
      Moderator

      Hi @hstal, isn’t it frustrating when the hospital staff thinks they know more than the patients? Sadly, your 5 years of experience with your daughter, you know what works best for her. I have never been told that before in my 15 plus years of living with PH and on oxygen.

      I am grateful that she did not have a nosebleed while there. I bet they would get an earful from one frustrated moma, if so. -Hehe
      I also use AYR gel to help with dryness in my nose. I still do experience nosebleeds at times.

      Which new medication did she start? How is it going so far?

    • #24219
      Heidi
      Participant

      @jenc. She started uptravi. She did great and is doing great. No side effects at all – but ai did alot of research before to make sure we knew exactlywhat getting into and best schedule for her.

    • #24226
      Jen Cueva
      Moderator

      That is excellent news, @hstal. I am on Uptravi and have been for several years with my other PH meds. It was so much better for me as far as side effects. I switched from Orenitram to Uptravi, because of so many GI side effects. Which medication was she on previously?

      Research is essential. We can educate ourselves and add to what the doctors tell us. Is she in first grade? How are y’all doing with the virus stuff? I am guessing that y’all are on “lockdown” mode there in MN, too.

    • #24228
      Heidi
      Participant

      @jenc She was on sildenafil and ambersentan and oxygen therapy and now we added uptravi.

      She is in prek. We wanted to slowly introduce to school since she had never had a daycare (had a one on one sitter for 5 years). For sure in full lock down – nobody in or out. I dont think I have used amazon so much in my life! How are you all?

      *Sorry for any typos – on my phone

    • #24235
      Jen Cueva
      Moderator

      Hi @hstal, I am also on sildenafil(Revatio) and have been for years. I hope that adding the Uptravi will help her with symptoms.

      That is great that she has had the same babysitter for five years! She’s at such a fun age. What are y’all doing to stay busy?

      Yes, we are keeping Amazon busy, too. Staying safe and on lockdown here in Texas, also.

    • #24238
      Heidi
      Participant

      @jenc She actually is symptom free and pressures not seen on echo, we are just being aggressive to reduce pressures just that little bit she has. Cardio wanted pump but I pushed back on that! Glad you are staying safe. We are doing lots of science and art all while mom tries to work!

    • #24241
      Jen Cueva
      Moderator

      Hi, @hstal, that is excellent news that your daughter is symptom-free. I also want to praise you and her medical team for advocating for her and trying to be proactive in dealing with her PH. I, like you, had to speak to my doctors as they were ready to start me on IV therapy(remodulin) several years back. This is my last option, so I help off long enough for new treatments to come out. That is when I started Orenitram, then later switched to Uptravi.

      I am sure trying to balance, work, mom, and teacher is not easy. It sounds like y’all are doing a great job. Keep it up!

    • #24257
      Brittany Foster
      Keymaster

      @hstal Hi Heidi. This is why it is so important to be an advocate for others as well as myself! It is so good to hear of success stories and successful advocacy happening to get what we need and deserve. It can be so empowering !

    • #24723
      LaDonna Molina
      Participant

      My experience has been that you should use a humidifier (water bottle/bubbler) if you are on 4 liters or more of oxygen. The higher the oxygen, the faster you’ll run out of water. I am currently on 6L and was running out of water every day and a half or so. I found out they have a “high flow” humidifier which I use now and it’s supposed to last longer, but I don’t think it really does. It seems like we still have to refill it every other day. Also, we only use distilled water in it as we were instructed.

    • #24733
      Jen Cueva
      Moderator

      Hi @ladonna, I also have heard that some suggest the use of a humidifier bottle, the higher the flow. I did not know about the high-flow humidifier bottle. But, I am sure that some will find that valuable who are using high-flow.

      I am on 4 liters and refill mine quite often, so I can only imagine. I also only use distilled water. Thank you for your tip. I hope that you are staying well.

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