Idiopathic Pulmonary Fibrosis Diagnosis?

Recently my grandad has been told he may have Idiopathic Pulmonary Fibrosis. He is bad at explaining things and reacts very extremely to anything that may insinuate he may die soon. As a result he's been very hard to get information out of as to whether he was diagnosed with this or was simply told he may have it.

From the information we could get, he has had an X-ray scan, which indicated some scarring on his lungs. He's also got a cough and cold. My grandad is in his high 60's in terms of age. He also does not smoke.

We suspect his cough may have come from the cold that was going around the house quite recently. Therefore I think that they have concluded a false conclusion based on this.

As Idiopathic Pulmonary Fibrosis is firstly, poorly understood. Secondly, the discovery/results of the scar was only made quite recently, therefore I think it was due to this close discovery, and him developing this cough (Which seems likely to have been the cold going around the house) that made them conclude it was this.

It's also stated a CP scan is needed for formal diagnosis? And he hasn't had one of those, so does that mean this wasn't a diagnosis? Since we are still unsure whether it was a diagnosis or not, since accurate communication with my grandad is quite hard at this time.

So does this seem like he may have Idiopathic Pulmonary Fibrosis? Or is it something else? And how severe is a scarring on the lung? How would this scar effect him, if at all?

Thank you for taking your time to assist.

12 Replies

  • Hi there, sorry to hear about your Grandad. My husband who is 74 has recently been diagnosed with Idiopathic Pulmonary Fibrosis. He was in hospital being checked for a clot so they did CT scan which showed up some scarring on lungs, so they suspected IPF, however they did a specific CT scan for IPF which is when it was confirmed.

    Your grandad must have follow appt I would think so if possible someone should go with him to ask the questions you have. I find 2 sets of ears is better than one.

    As said we are quite new to all this but some people have a persistent cough, others don't.

    Try to take step by step, sometimes too much info to start with can be overwhelming.

    You need to be able to speak to whoever your grandad saw to understand exactly what he was told.

    All the best.

  • At least now I know it wasn't a formal diagnosis of anything. So I can at least calm my family down about this endeavor right now. My grandad didn't fully understand it and they printed out a bunch of papers describing what it was he may have, which sent a pretty big worry into everyone. Especially to my grandad crying that he wanted to see all of his grand children grow up, so I'm sure this information will ease him quite a bit. Also the fact even him having this does not mean he will strictly die soon. As some people have stated living a lot longer than the average 3 they apparently estimate for you to survive from diagnosis.

    I have suggested someone go in with him on his follow-up appointment. Just got to hope it isn't this now, or anything that severe.

    I hope all the best for you too, as well as for your husband with that Idiopathic Pulmonary Fibrosis.

  • A CT scan is DEFINITELY needed as part of IPF diagnosis. I have had it now for 13 years and only recently started with an occasional slight cough, no mucus, so a cough is not always part of it. There nearly always a 'crackling' sound from the lungs when breathing, a stethoscope will pick this up.........

  • Thank you for the insight. I hope it hasn't effected you too much over those 13 years. It's useful to know a cough is not always part of it, the sources I've read implied to me otherwise. So it's always nice to hear from ones personal experience.

  • Hi PlasmaticDW good to see you took my advice to post in here :) x

  • Yep. I certainly did! :D

  • :) :) x

  • Without a letter form the consultant or GP to confirm you will never really know unless he tells you. I have had fibrosis from 2008 after a very severe infection making my lungs bleed, one day so badly I was given 6 units of blood! which must of hit their stocks as am O neg. I get what I call a a silly cough and times of SOB for no real reason it seems that stops me in my tracks.

    Maybe try and slip it into conversation rather than asking outright or directly?

    Be Well

  • hi sent private message. Thinking of you all and send kind thoughtsxxxxx

  • The scaring is caused by the lungs trying to heal themselves but it all goes wrong. It is on the inside of the lungs. I had one GP tell me it was nothing to worry about. What did he know?

  • I had a provisional diagnosis in July 2013 of IPF and a second CT scan in Sept 2014 confirmed extensive scarring in all areas of the lungs. I have a persistent cough, clubbed nails and bring up copious amounts of mucus but am not breathless and still take part in walking races, play golf etc. I am about to have an open lung biopsy and fear that could start a downward spiral but have to trust the professionals. I believe you can live with this condition for longer than 3 years (at least hope that is the case!)

  • I have had it since 2001!

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