My husband was diagnosed with pulmonary fibrosis he does labor work his docter said he is not disabl

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He is out of breath going from one room to another I just don't understand how he will be able to work does anyone have any advice or suggestions.

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8 Replies

  • Posted

    Hi Sharon, what type of test did they do to your husband that they found out he has pulmonary fibrosis?  What does he do from here on in?

    Thank you

    • Posted

      He had a ctscan and his pulmonary docter said he has pulmonary fibrosis and emphasyma and a nodule and that was all he told him except for he can work and without limitations. My husband has to go to ER every couple months cause he always has bronchitis and they always admit him. I don't know I'm just confused about it.
  • Posted

    Hi sharon97922

    If your husband does manual work and been diagnosed with an IPF he should NOT be working and you should be putting in a claim for disability.

    I have an IPF but not the emphasema but then I'm 72; I was prescribed medication of Pirfenidone (9 capsules daily) and this has changed my life! The Pirfenidone slows down the progression of the disease - if it were me I would be asking why I were not on this medication OR ask for a second opinion!

    kind regards

    Jazztrain

    • Posted

      Thank you so much I will tell my husband to ask his docter about that medicine right now he is taking spireva.
  • Posted

    Hi Sharon97922

    I was of the impression that 'spireva' was for a COPD condition not an IPF; the medication of Pirfenidone CANNOT be prescribed by a GP only a specialist lung centre and I give Papworth Hospital as an example. This drug costs in excess of £500 a week to prescribe so you can see why it cannot be prescribed by a GP.

    I just wanted to make this point.

    Kind regards

    Jazztrain

    • Posted

      Hi jazz train, thanks for letting us know that my husband has no insurance so I guess that could be part of the problem the pulmonary doctee he See's really didn't want to diagnosis my husband with nothing until I asked him why the ER makes a big deal when he goes in there. The docter finally did a ctscan and it came back pulmonary fibrosis and emphasima with nodules however that was all he told my husband he didn't ask him where he worked or anything and has not given him any new medicine except for spiriva which he takes for copd as well and inhalers . My husband is 48 and has no insurance so his choices are limited on care.
  • Posted

    Hi Sharon

    What has no Insurance got to do with it; Pirfenidone is provided by the NHS free of charge (I don't have insurance either) it is licenced through NICE (National Institute for Clinical Excellence) so if your condition warrants it - you get it! BUT alcohol has to be limited to just 13 units per week.

    Kind regards

    Jazztrain

    • Posted

      Hi jazztrain Thanks for the information on the medicine I will ask my husband's docter about it and hopefully he can get it free also. Thank you!!

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