• Suzy42 became a registered member 1 year, 9 months ago

    • Hello Suzy, welcome and thank you for joining your pulmonary fibrosis forum.

      • Thank you, trying to find my way round these forums. Are there many members from the UK.

        • Yes, there are members from all over globe including the UK. Some members are more active than others. Feel free to write a topic on the subject. Take care and welcome, mark!

          • Thank you Mark. My story is quite simple, this time last year I went from breathing normally and walking well. Over night I had a funny tingling sensation when I breathed in and then I found I was getting out of breath going upstairs. Later during August I went to see my GP who sent me for chest xray and they did a basic spirometry. The chest xray was clear but spirometry was a bit off. GP said she was referring me to chest consultant and she had a feeling I may have fibrosis. I didnt get an appointment till Nov when cosultant said he thought it was worsening asthma, but was sending met for ct scan. The scan showed scarring and UIP pattern so IPF was confirmed. Then they changed there mind and said it was squashed lung. After undergoing various other tests. They decided I probably had IPF and were referring me to the Royal Brompton hospital in London. Because of covid29 I finally had a consultation over the phone with the Brompton who confirmed diagnosis and started on treatment. I have been on Ofev for nearly 4 weeks and not suffering too much yet with side effects. I’m scared stuff as shielding for the vulnerable with medical conditions ended yesterday. I’m very worried about going out. .

            • Hello Suzy, unfortunately the difficulty you had in getting a proper diagnosis will resonate with many of our members. It’s unfortunate some patients go through so much adversity in getting a diagnosis. As lung disease patients we know if we get this Covid 19 there is a higher percentage we will experience more serious outcomes. Wherever you go, please mask up and social distance from people. I am also a lung transplant recipient and I try to stay 10 feet from other people. I don’t go to stores unless it is early and the patrons are scarce. Take care, mark.

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