Will I be told how long I have had IPF

I have been diagnosed with IPF and am waiting for the results of the lung biopsy performed 2 weeks ago. The doctors seem in no hurry to give me a definitive answer and have only mentioned in passing that it's almost certainly IPF. I was in hospital in September having numerous tests, but nobody mentioned IPF. The Consultant just said ''she had never seen a CT scan like it'' but wouldn't explain why Only on the morning of the biopsy was IPF mentioned. Can they tell by the scans and biopsy what the progression might be, and how long I have had it? I have no idea what might happen next or when I will get the results as I have been told because of Christmas the Consultant can't fit me in to his clinic.

9 Replies

  • Hi Mary. My Husband has IPF. Have you had trouble with chest infections and breathlessness. That might give you an idea if you have it and how long you have had it. Yes they can tell by scans. My Husband had a few. The progression is different for everyone. The fact that the consultant can't fit you into his clinic looks promising. Why don't you give the BLF a ring they will tell you a lot more than I can. By the way welcome. I hope that helps a little.

  • Thank you for your reply. I have had problems for about 3 years, but have had pneumonia x3 in the last 18 months. I was taken ill in India when doing a charity trek in April 2012, but think I had problems before that, as I suffered a degree of altitude sickness on other treks. Just need to know for sure as it's all a little up in the air.

  • Hi Mary. There is no way of knowing for sure how long you have had it. We were told four years ago for my Husband but he had quite a few chest infections for a long time before so we don't really know. Have you researched it at all?

  • Hi, I've looked at quite a lot of research but it all seems a little vague as such a lot appears individualised. Guess I just need to be patient!

  • Sorry Mary. It's a case of how long is a piece of string. Be patient and hope they have made a mistake. I'm a bit like you and like to know what is ahead so you can plan. Enjoy what you have and live for today. Tomorrow never comes or so they say. Take care and post again if you like. Glad to help. Mavis . X

  • Good Morning mary1956 and welcome here.

    I have only just noticed your post and I am not sure if any of us can answer your queries, but we can say what may think to be a reasonable comment.

    The medical profession don't usual say anything until they are pretty sure of all the medical facts, probably now they are just waiting on the lung biopsy results before they are satisfied of an accurate diagnosis.

    The CT scan and the biopsy can show the extent of the lung damage and likely indicate the lung disease to be treated. I am not sure they can tell you how long you have had this damage but there is no reason why you can't ask them how long they think you have had it and what may have been the cause. Also ask if a pulmonary rehabilitation course will help you once you have had diagnosis confirmed.

    To my knowledge and understanding, IPF means idiopathic pulmonary fibrosis, idiopathic means the cause is unknown, pulmonary fibrosis means scarring of the lungs, however many lung illnesses have this scarring so when all your tests results are to hand the medical profession may be able to give you a more precise diagnosis..

    Its very worrying when going through the tests and not knowing precisely what the problem is until all tests have been carried out giving a more accurate diagnosis.

    I will be keeping everything crossed for when you get your lung biopsy results. Meantime take good care of yourself over the Christmas period and avoid others who may be infected with a cold or flu virus. Perhaps check in with your GP to see if he can give you any medicines to help you at this time, if you have breathing difficulties, any pain etc.

    Sending thoughts to you, come here any time you want to chat, and do phone the BLF helpline before the closure for the Christmas period, they are open 10am to 5pm normal working week days and their contact number is 03000 030 555

    Very best wishes to you

    x BC x

  • Thank you so much for your reply. Just trying to stay focussed and positive. xMx

  • Hi Mary! I have IPF and received an initial diagnosis from my local consultant in 2010. I was not at all sure that my local consultant knew anything about IPF so after I had done some research on the Net and read the information on the BLF site, I asked for a second opinion at the Royal Brompton (one of the few specialist hospitals for interstitial lung diseases in the country) . After many tests they confirmed the diagnosis in May 2013. I think diagnosis would probably be quicker if you lived close to one of the specialist hospitals and I think knowledge of IPF is slowly becoming more widespread amongst the general medical profession so hopefully you should know something a lot quicker now. There is a BLF webinar available on Youtube if you want to learn more. I would post a link but as the webinar lasts about an hour you are perhaps better going into Youtube yourself. Just type "Idiopathic Pulmonary Fibrosis" in the search box and it should be listed. Main thing to remember is we all progress at different rates but keeping as fit as you can by exercising and eating well is probably the best thing you can do. Enjoy a Merry Christmas! :-)

  • Thank you for your reply. I'm still waiting for a Consultant appointment, but have been referred to a National expert so hope that helps. I am still in shock at the diagnosis having been fit all my life. Also my initial care and getting a diagnosis has been really bad, but I hope to now be on the right track.

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