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    • #20358
      Colleen Steele

      Has needing to use portable oxygen equipment affected your ability to live a normal lifestyle?

      Action has been taken by engineering graduate students at Johns Hopkins University, aware of the difficulties the challenges that lung patients experience. According to the column shared on PH Associations page, “They have launched a survey that examines oxygen users’ experiences in ways that may advance technological development by engineers, as well as help further the Pulmonary Hypertension Association’s (PHA’s) advocacy efforts to achieve greater patient-centered quality care.”

      Here is the link to column, “Oxygen Survey May Lead to Better Technology and Advocacy”. There you will find a link to the survey if you wish to participate.


    • #20756
      Margie Novak

      Colleen, I have completed this survey and any improvements they make in portable oxygen. I am up to 8 liters and I cannot use portable oxygen. Have to take a big E tank when I go out and make sure I have enough E tanks in the car, which take up a lot of space! They are heavy and limit what I can do but I go out with them to restaurants and such. Would like to have a small oxygen tank to use but for now.. will use my E tanks and appreciate that I have those! thanks and hang in there everyone with PH!!!

      • #20800
        Colleen Steele

        Margie, I’m so glad you took a moment to complete the survey. I think patient feedback truly helps with medical advancement. My son often opted for the big E tanks too. It was better than worrying about running out of oxygen.

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