diagnosed

I've finally had the results of my lung biopsy and it has confirmed that I have Idiopathic pulmonary fibrosis and the type I have is usual interstitial pneumonia. I'm now waiting to see another Consultant regarding possible treatment. Unfortunately the wounds from the lung biopsy became infected and are being packed and dressed daily, I've had a lot of pain from the sites. Ironically the Consultant wrote to my GP saying the wounds are healing nicely; at least that gave me a chuckle. I think what I find most frustrating is the length of time this is all taking. It's now 14 weeks since I was admitted with SAT's of 70%! Does diagnosis and follow up usually take this long?

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  • I am afraid I cant advise, Mary, but just my best wishes that your recovery will go well. xx

  • Get in touch with the people at BLF when you can. Click on red balloon at top of this page and they can offer advice to you. Hope you feel better very soon and best wishes for Christmas and the coming year. Take care. xxxx

  • Hi Mary welcome to the IPF club if it gets any bigger we will need our own Forum page, IPF is the same as any other illness they all have different levels i was diagnosed in march this year and by November nothing had changed in fact i dragged a bit lung space back, just by exercising a little bit at a time, Good Luck Hope The healing Continues, Mattcass

  • Hi mary

    Sorry to hear of your dx but at least now you can get on the most beneficial treatment regime, especially when you see your new consultant. Crikey sounds a bit rough the wounds becoming infected.

    Wishing you well and please let us know how you get on.

    love cx

  • Hi Mary,sorry your news isn't the best,just before Xmas! I do feel for you,but at least now they know,they can get on with treating it.

    Try & have a Happy Xmas,& the best of luck with everything in the New Year! xxxx

  • Hello Mary, my husband had that and diagnosis was obtained slowly but when he saw the Professor at Heartlands chest clinic things moved on apace. He was great and suggested a supplement N-acetyl cysteine or NAC. Apparently this used to be prescribed but Mrs Thatcher took it off the list. Check it out on google. It is good for lung problems. Apparently there is some medication that can stave it off but you cannot be out in the sun, and other things I can't remember now. Also your case has to be put before a committee to see if it would be of use to you. They denied it my husband but he didn't want it anyway as there were too many 'don't dos'

    As an aside, we were told that IPF could be a rare side effect of statins which he did take but there was also heavy smoking to take into account though they said was not the cause.

    A word of warning. When you have your breath test eventually do not overdo it though they do say 'keep going, keep going'. twice my husband had that happen to him. The second time started he tried too hard to 'help' the new technician and developed a bad cough on the way home from his appointment bringing up sputum and eventually caught an infection off me, eventually got the correct strong antibiotics - too late - next day he died of an aneurysm. Whether the horrendous coughing had to do with that I do not know nor would I want to now. So beware and any man aged 65-70 should ask for an ultrasound to see if there is an aneurysm.

    I saw on TV there is a department in Stoke on Trent hospital for respiratory sufferers and that would have been good for us to have known as our critical time was over Christmas when everything around us (west midlands) was useless except for great Paramedics.

    Good Luck

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