Even more confused

Having been told in December that the lung biopsy has confirmed my diagnosis of IPF I saw a different Consultant today who isn't so sure. He said although the CT scan I had was really abnormal he's not convinced it's fibrosis?. He's now referring me elsewhere. My lung function test today was worse than September and lungs function now 54%. (It was 66%). The 6 minute walk test brought SAT's down to 78%. He said they may never know what's wrong and although all auto immune tests were negative, I may still have an auto immune disorder. He thinks I may need very high dose intra venous steroids . Plus oxygen in the home. It's now almost 5 months since I started investigations and I'm no further forward. Have others experienced this?

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  • Hi Mary, Sorry to hear you are confused about IPF I was also diagosed with IPF in Jan last year and would be on the transplant list a.s.a.p. 6 month I am not on any Oxygen at all, later I met the top man in Scotland Nik Hirani who told me he was not ruling the transplant out but was putting it on hold till the end of the year as he was not convincined I had IPF we met in December and nothing had changed my breathing was a bit shallower but nothing to worry about, My GP wrote a letter for me to my employers and stated i have IPF even after I told him what Nik Hirani said I am still confused but i am fighting it by excersising a lot when i'm painfree from my Rheumatoid Athritis. Good Luck Matt

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