Scott Robertson

Apologies, the book is called Breath, not breathe!

I got the author right at least.

Hi Graham,

There is a specific subheading for for all things to do with Esbriet (pirfenidone) under the forum tab, scroll down.

You would likely get people answering if you post you’re question there or may even find the information you are looking for already discussed.

you can also try doing a search and see what comes up, the search f…[Read more]

Hi Mary,

Thankyou for sharing your story.

Yes it is tiring at times to live like so many of us do, being ill and having symptoms that really affect your daily life can feel burdensome and exhausting, and yes even from doing everyday mundane things! .It is good though that you acknowledge this and don’t try and shove it away as something you s…[Read more]

Hi Donald,

Thank you for  sharing your own experience.

Having trawled through the vast majority of this forum it is surprising to read that so many people are being advised against the lung biopsy route.

In my case I was told very simply that because I am 53 that they didn’t want to run the risk of causing damage to my already scarred lungs th…[Read more]

I think getting a second diagnosis would benefit you and hopefully put your mind at ease. If they are able to evidence and rule out IPF then they should be able to explain to you why they have come to that conclusion. Likewise they should be able to explain to you why they have come too the conclusion that you have ILD.

IPF is part of the ILD…[Read more]

Charlene,

Forgot to say but purchased the guide to pulmonary fibrosis and interstitial lung disease book

A fantastic resource for anyone

well done for your contribution and time to this project.

Scott

Thanks Charlene,

As a newbie it is clear from this forum alone that getting one’s head around all the info and terminology can be confusing and frustrating in equal measure so it is good to have such well thought out contents in one place.

I also want to thank you for the steady steering of this particular forum ship. Your journey is well d…[Read more]

Hi,

having not long been diagnosed with PF as a complication of the ILD Hypersensitivity pneumonitis I believe that a lot of the evidence for any PF / IPF diagnosis comes from High resolution CT scan and pulmonary function breathing test results which will be obvious to any clinician reading them.

I am likely to have scarring that looks…[Read more]

Thanks Colin,

it also doesn’t help that most of the symptoms can be very similar across the various illnesses and diagnosis which is why I know a proper diagnosis is so important early on.

My understanding though is that all PF regardless of type or origin is progressive, I am just not clear where that progression always leads but the very wo…[Read more]

Hi again Gavin,

glad you have the tech to be able to monitor you’re Stats, being able to evidence what you are saying can only be a good thing.

Your sleeping , or lack of does really sound grim. I was in the military and know what sleep deprivation does to the body and more importantly the brain, after 4 days of hardly any sleep I was reaching t…[Read more]

Hi Gavin

whatever it is that you are going through, it sounds grim.

don’t know if you have a fitness type watch that measures oxygen levels or a pulse oximeter but I agree that if you can evidence that your oxygen levels are dropping to mid 80,s then no healthcare professional should be doing anything other than getting you into hospital. My o…[Read more]

Hi Joanne,
I am 53 and have recently been diagnosed with pulmonary fibrosis from a long time illness of hypersensitivity pneumonitas. I am also from the U.K.

I am sorry to hear about how you’re husband got the news, through the Mail seems extremely unprofessional in my opinion.

having been diagnosed I can sympathise with the amount of i…[Read more]