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Burma

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@burma

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    Burma replied to the topic Sudden deterioration in breathing in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 11 months ago

    I am sorry to hear your father is having a problem with shortness of breath.  It is very scary, I know.  I have been diagnosed with Pulmonary Fibrosis (2018) and take OFEV.  I am on 4 L oxygen., 24/7, for about a year now.  I was having a very hard time breathing just by taking a couple steps.  My Oximeter would go down to 74 and it would take…[Read more]

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    Burma replied to the topic Head aches in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 2 months ago

    Hello All,

    I too have been fighting headaches and I contribute it to possibly lack of oxygen and/or dry sinuses, if not both.  I am on oxygen and I do use a humidifier on my concentrator and that has helped.  I would wake up every morning with a headache.  My morning routine includes a few doses of saline spray and then it would seem to go aw…[Read more]

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    Burma replied to the topic Cold Weather and Fatigue for IPF Patients. in the forum Canadians Living with Pulmonary Fibrosis 2 years, 3 months ago

    Hello Charlene!  I am one of those that dread the wintertime.  Not so much because of my compromised lungs and the cold temps, but because here in western Pennsylvania, we have a whole LOT of cloudy, dreary days and it just seems to suck the energy out of me.  I seem to be tired, have brain fog, loss of ambition, and quite lethargic on those da…[Read more]

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    Burma replied to the topic The Frequency of Changing Your Nasal Cannula in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 8 months ago

    I am on oxygen 24/7 but I only change my canula every other month, and the oxygen tubing about every six months. I clean the canula every day with vinegar and soap and then rinse with hot water. Use the vinegar first and then the soap and water. Rinsing it will take away the vinegar smell. As for the long tubing, I gather it up, plug the drain,…[Read more]

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    Burma replied to the topic The Awkwardness of Wearing A Mask In Public in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years ago

    If I feel the need to wear a mask, I do and I really don’t pay any attention to anyone’s opinion. They aren’t fighting to breath! I use a VOG mask. A little pricey but worth it. Although, I don’t wear my mask into the bank. Don’t want to scare anyone. LOL I also purchased two “Gators” on Amazon, which work well. (You can also pull the back…[Read more]

  • Profile picture of Andrew (Randy) Hicks

    Andrew (Randy) Hicks and Profile picture of BurmaBurma are now friends 3 years ago

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    Burma posted a new activity comment 3 years ago

    Janis, be sure to eat protein when you take OFEV. Every time. Protein takes longer to digest. The Open Door suggested it to me and it has helped my stomach settle down. Good luck.

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    • Profile picture of janis gorsline
      janis gorsline replied 3 years ago

      Thank you for this information. I appreciate it very much.

    • Profile picture of Mark Koziol
      Mark Koziol replied 3 years ago

      Thank you Burma for sharing your experience with ofev and helping out another forum member. Mark

  • Profile picture of janis gorsline

    janis gorsline and Profile picture of BurmaBurma are now friends 3 years ago

  • Profile picture of Burma

    Burma replied to the topic Is it time to give up Christmas? in the forum Living with Pulmonary Fibrosis: 50+ 3 years ago

    You are not a Grinch or Scrooge. Christmas Eve 2018, I ended up in the hospital. They thought I had pneumonia. As usual, I was supposed to host Christmas dinner for the family. My son, his wife and his three adult sons. Because I was in the hospital, family Christmas fell apart. I was released the 27th and felt fine, thankfully…they were just…[Read more]

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    Burma replied to the topic Aloha from Hawaii in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 3 months ago

    Charlene, so happy for you! And thank you for sharing your adventures and your pictures. You enjoy your dream vacation. You deserve it!!

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    Burma replied to the topic Hair thinning: a side effect of Ofev? in the forum Ofev (Nintedanib) 3 years, 6 months ago

    I have been wondering about this. I seemed to have lost quite a bit of hair the last several months. While I was at my last hair appointment, my hair dresser said I was losing my hair, and maybe should have my thyroid tested. I did have it tested and the thyroid is just fine. I mentioned it to my GP and he said it might be a side effect of the…[Read more]

  • Profile picture of Burma

    Burma became a registered member 3 years, 6 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 3 years, 6 months ago

      Hello Burma, thank you for joining your pulmonary fibrosis forum. Welcome!

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