• Posted by joanne on March 4, 2023 at 3:18 pm

    Hello everyone. My husband has recently been diagnosed with PF and Emphysema after 36 years of heavy smoking. We received the diagnosis through the post via GP letter hence devastated as our only information until out first appointment was reading the web. I thought I had a good understanding of  both conditions however the Consultant today told us that not all PF is progressive and by stopping smoking (which he is very close now to doing only 3 a day) it can stop. When I challenged this, as I have read on all my research that it never stops they are all progressive he replied only IPF is considered life limiting not other types, am I going crazy? This is not at the impression I have from my reading. I would hate to think he is giving us false hope rather than being honest with us. Any advice would be appreciated. We are in the UK so hello to everyone.

    meredith replied 6 months, 2 weeks ago 3 Members · 4 Replies
  • 4 Replies
  • joanne

    Member
    March 4, 2023 at 3:19 pm

    I should add he is 52 years old

    • david-reno

      Member
      March 4, 2023 at 4:38 pm

      Not all PF is created equally. I was told that PF from smoking is about the best one to get, not that any are good. Keep in mind that there are over 200 types of PF. Best of luck

      DJR

  • joanne

    Member
    March 5, 2023 at 12:14 am

    Thank you for your reply that is good to hear!

  • meredith

    Member
    March 9, 2023 at 3:02 pm

    Pulmonary Fibrosis is incurable and progressive. It can be aggravated by environmental issues such as smoke, allergies, chemicals. The progression may be fast or slow. It doesn’t go away. Supplemental oxygen may be needed.
    I can’t tell of your GP is being dishonest or just doesn’t know about PF.

    Ask for a a pulmonologist referral.

    Meredith

  • scott-robertson

    Member
    April 13, 2023 at 8:33 am

    Hi Joanne,
    I am 53 and have recently been diagnosed with pulmonary fibrosis from a long time illness of hypersensitivity pneumonitas. I am also from the U.K.

    I am sorry to hear about how you’re husband got the news, through the Mail seems extremely unprofessional in my opinion.

    having been diagnosed I can sympathise with the amount of information that is available online and it is very easy to see information that can sound very scary and more often than not contradictory.It is important though to recognise that there is a big difference between IPF and PF and yes, from what I have been told fibrosis is always progressive, although this is very much dependent on personal medical circumstances.

    Moving forward I think it is very important to get a proper diagnosis of the condition, the effects, future treatment plan and ultimately future prognosis.

    I don’t know your doctor but it seems that they do not have the necessary knowledge or skills to get the best for your husband. I would ask your practice if there are any doctors who specifically have an interest in respiratory illnesses and ask to see them moving forward. Absolutely do not settle for 2nd best because you might have always gone to a particular doctor etc and feel some loyalty. Also don’t be scared to contradict advice or opinion.

    The fact that you are on this forum suggests that you are worried enough to reach out and loving enough of your husband to care.

    you should perhaps consider joining the group forum for carers, family etc as they might be able to support you.

    Sorry I can’t be anymore help and I hope things sort themselves out. Just don’t be scared to push for things.

     

     

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