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    • #29895
      Marj
      Participant

      Hi, I have posted on here a couple of times in the past.  My husband was diagnosed with Idiopathic Pulmonary Fibrosis  four and half years ago.  His last visit to Aintree Hospital – which is centre of excellence for respitory diseases – was in February.  According to the letter sent to our GP his FVC has reduced by approximately 7%, and he should be seen in six months.  He recently had a chest x-ray which showed scarring or shadow at the base of his lung.  Our GP was trying to get him seen by the respitory team at our local hospital because he is unsure if it is just the fibrosis, but suggested we chase up the appointment with Aintree which should have been last month.  His main problem at the moment is weight loss, he now has a BMI of 18.4 and weighs 60.4 kg – he is 6ft 1″ tall.  Today our GP telephoned my husband and told him that both Aintree and our local hospital have both discharged him!    Has anyone else been discharged by their pulmonary doctors.  Could this be a National Health ploy to reduce the list of people waiting to be seen.  It’s not like he’s recovered or on the mend.

      I would be interested to hear if anyone else has had any similar experience

      Marj

       

    • #30445
      Toni Evans
      Participant
        Sorty to hear of your husband bribg discharged with IPF. IMVRECENTLY DIAGNISED N DO NOT WABT TO TAKR OFEV. MY FEARVISBILL BECDISCHARGED FOR NOT TAKING OFEV. MY OTHER CONCRRN IS EXCESSIVE SLEEPINESS. HELP
        TONI
    • #30448
      Dicky Griffin
      Participant

      It’s been a couple of months since you original post.  How is your husband doing?

    • #30458
      Duncan Fowler
      Participant

      Be more aggressive with your medical providers.  Make sure they know that you want care and are willing to do what they ask.  Has anyone given you a reason for being discharged?
      Tell them you want to be seen again and be enrolled in any IPF programs they may have
      Make and keep your appointments.  Do what the Doc’s say.

      Dunc

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