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  • I take 20mg a day of Prednisone. Taking them as made a big difference to my breathing. I was really struggling before but not quite so bad at the moment.

  • When I was first put on oxygen the 02 team told me the funniest question they’d been asked was “can you overdose on oxygen?” The answer was no.

  • I too suffer with an incredibly sore mouth. It’s particularly painful where the gum meets the lip, feels as though its been cut. The only thing that helps is soluble painkiller which I then hold in my mouth for as long as possible. It’s so bad that it prevents me from eating at times.

  • @jayrom0807 hi Jay I know how you feel. My diagnosis came out of nowhere. Today I had a full body scan for bones tomorrow its for lungs. I have researched the disease & it’s not good. I’m on oxygen which helps. I’ve just received booklets that I ordered from British Lung Foundation. Today my friend told me how much she admires me as I seem to have…[Read more]

  • Thank you to everyone contributing to this thread. It answered questions I didn’t even know I had. I have noticed that when I’m super tired my oxygen levels are low.

  • Hey Charlene, another informative post. I have found it’s effective to lean over the table and clasp the hand of the person confiding in you. A hug is good too.

  • Janey Henderson posted a new activity comment 1 month, 2 weeks ago

    I typed a reply to you but was unable to post due to inappropriate word! Have no idea what that could have been?

    • Hi @polly, so sorry to hear that — sometimes I swear this forum has a mind of it’s own! We have implemented “safe guards” to avoid spam and sometimes it picks up on what-is-assumed to be inappropriate words, when they actually aren’t. I know that can be super frustrating, sorry to hear that happened! You can direct message me if you want (or…[Read more]

  • Janey Henderson posted a new activity comment 1 month, 3 weeks ago

    Thank you. I think I’m struggling as it’s all so new to me. I’m very low & finding it hard to motivate myself. I’ve been trying to do something each day. I’m going to downsize so I’m working on my bedroom & sorting things for charity. My mum is a great help.

    • Hi @polly – so nice to hear from you, though so sorry to hear you’re struggling. This disease is so tough, not only for the physical issues it causes but the mental anguish too. I’m glad your Mom is a great help to you, and hope you’re finding ways to keep your mind busy. Something that really helped me was learning a new hobby that I could do…[Read more]

      • I typed a reply to you but was unable to post due to inappropriate word! Have no idea what that could have been?

        • Hi @polly, so sorry to hear that — sometimes I swear this forum has a mind of it’s own! We have implemented “safe guards” to avoid spam and sometimes it picks up on what-is-assumed to be inappropriate words, when they actually aren’t. I know that can be super frustrating, sorry to hear that happened! You can direct message me if you want (or…[Read more]

  • Charlene, your posts are so positive. I’m afraid I have to own up to jot getting out of bed for over a weak. I’m overwhelmed & exhausted. I just want this over & done with. Janey

    • @polly – thank you for your kind words, but know that I am thinking of you! Sorry to hear things are such a struggle for you as of late. Do you feel your disease is progressing? Is there anything we can do to help (I know loaded question, but wish I could do something for you). Please know Im thinking of you.
      Char.

      • Thank you. I think I’m struggling as it’s all so new to me. I’m very low & finding it hard to motivate myself. I’ve been trying to do something each day. I’m going to downsize so I’m working on my bedroom & sorting things for charity. My mum is a great help.

        • Hi @polly – so nice to hear from you, though so sorry to hear you’re struggling. This disease is so tough, not only for the physical issues it causes but the mental anguish too. I’m glad your Mom is a great help to you, and hope you’re finding ways to keep your mind busy. Something that really helped me was learning a new hobby that I could do…[Read more]

          • I typed a reply to you but was unable to post due to inappropriate word! Have no idea what that could have been?

            • Hi @polly, so sorry to hear that — sometimes I swear this forum has a mind of it’s own! We have implemented “safe guards” to avoid spam and sometimes it picks up on what-is-assumed to be inappropriate words, when they actually aren’t. I know that can be super frustrating, sorry to hear that happened! You can direct message me if you want (or…[Read more]

  • @charlene-marshall having recently being diagnosed with this disease information like yours is of great interest to me. I’ve recently come home from hospital & am on oxygen which means I’m more active than before admitted to hospital. I’ve also a fractured ankle which is impeding me slightly. Exercise for me is walking & the thought I might not be…[Read more]

    • @polly

      Hi Janey,

      Welcome to the PF forums — though sorry to hear of your recent diagnosis! While I wish none of us needed these forums, there is great comfort in the kind, generous and supportive people here. It’s a wonderful community.

      So sorry to hear about your pneumonia, that’s so tough. Hopefully the ankle heals and with your 02 backpack…[Read more]

  • Janey Henderson posted a new activity comment 2 months, 2 weeks ago

    Thank you. Much appreciated.

  • Janey Henderson posted a new activity comment 2 months, 3 weeks ago

    This is all so new to me
    Ive a very loud wheeze & I cant move without getting out of breath. Oxygen levels low. Am I just to lay here & die?

    • Hello Janey, I’m sorry about your current situation. I see you are currently being evaluated for a lung transplant. You have to stay strong for this evaluation process. Please talk to your doctor about re-evaluating your supplemental oxygen requirements if you are having this much trouble. You may also be experiencing some sort of infection. P…[Read more]

  • Janey Henderson became a registered member 2 months, 3 weeks ago

    • Hello Janey, we are happy to have you as a member of your pulmonary fibrosis forum. Welcome!

    • This is all so new to me
      Ive a very loud wheeze & I cant move without getting out of breath. Oxygen levels low. Am I just to lay here & die?

      • Hello Janey, I’m sorry about your current situation. I see you are currently being evaluated for a lung transplant. You have to stay strong for this evaluation process. Please talk to your doctor about re-evaluating your supplemental oxygen requirements if you are having this much trouble. You may also be experiencing some sort of infection. P…[Read more]

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