• Janey Henderson posted an update 1 year, 3 months ago

    @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 able to do that again filled me with despair. I have a backpack for my oxygen but I’ve not ventured out the house yet as still recovering from pneumonia.

    I’d be interested to know how you have dealt with this diagnosis? I’m told I have 3 years as it is advanced & complicated but there is a plan going forward & I feel I’m getting first class care. Some days I’m ok with the news other days I struggle. I have a great support network but I’m not one for confiding in people. I’m always the one there for others. Thank you again for your information. Janey, Southampton, England

    • @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 you can get mobile again. I know it’s tough with a lung disease, but it’s so important to keep active as much as we can.

      How I’ve dealt with this diagnosis is a loaded question, as sometimes I feel like I’ve dealt with it well and other times it doesn’t feel like that. The thing I try to remember is the “3-5 year” prognosis is just that: no one knows how long we’re going to live. I’ve met people who have lived with IPF/PF for 12,13,15+ years. Keeping that in mind always helps me! The next thing I focus on is having some control over the situation – whether that is doing rehab to the best of my ability, helping others, etc. Whatever helps me not become a passive patient and rather, an active participant in my disease helps. I don’t have any control over the disease course, but I do have control over what I do with my time! Not sure if this helps at all? Even though I have good days, I have bad ones too, and I think that is healthy to have both.

      Take good care and write any time!
      Sincerely,
      Charlene.

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