Hi Arjun,

Sorry to hear about your diagnosis of IPF.

It might help others give advice to you if we knew a little about you and in particular the fears you have. You mention your independence so this is obviously very important to you and rightly so and is likely something that lots of people with an IPF diagnosis must wonder about and…

Read more

Hi Amy,

sorry too hear about the tough time you are going through just now.

I am 54 and have recently gone through my own diagnosis of PF so the initial worry and concern that I had is still very prominent in my mind so I am mindful of how much of a shock it can be.

It can be both daunting and overwhelming to receive any kind of… Read more

Hi again Dennis

i wasn’t meaning too come across as being negative about it, I just don’t see much medical studies on it to validate it one way or another for those who suffer from any type of PF, and those commercial businesses that can provide the facility don’t really link any of their statements to hard evidence or studies and some of the… Read more

Hi Dennis,

Also from the UK and up in Aberdeen.

My knowledge on the use of Hyperbaric chambers is very limited but it is something I looked into briefly as I had come across related articles to do with sports recovery.

I know the chambers have been used for various things such as helping with sports recovery, wound infection (skin grafts… Read more

Hi Terri, thank you for replying and telling us a bit about you’re story.

It’s great too hear that you are able to exercise and derive benefit from doing so…it’s a very peculiar trait of this illness that we are told of the importance of keeping mobile and exercising when often the very last thing we want to do is exert ourselves. I am a… Read more

Hi Jessica, many thanks for replying and I am sorry to hear that you are having a tough time of it just now. I don’t know how much solace you will get from hearing me say that you are not alone in feeling the way you do, it’s natural and often comes from feeling like you have no control but you are definitely not alone and I am glad you have… Read more

Hey,

I hope my post doesn’t come across as disparaging to others. regardless of age the disease is horrible, the symptoms frustrating and debilitating and the outcome poor in many cases.

Although we all share a lot of what this illness brings to us in relation to symptoms etc I do believe that at various stages in our life the priorities… Read more

A younger person diagnosed with pulmonary fibrosis (PF) may face numerous challenges when the disease i believe is typically associated with older individuals. As we are aware PF is a progressive and life-altering lung condition characterised by scarring of the lung tissue. Although as the original postee of this topic I have already talked… Read more

Hi everyone

Having been diagnosed with hypersensitivity pneumonitis back in 2015, but fairly recently only been given my diagnosis of progressive fibrosing interstitial lung disease (chronic HP) I just wanted to reach out and ask how others of perhaps a younger age have found the journey they have been on and are going through. Has it been… Read more

The ones from O2 totes look good and well thought out, that is the make I have my eye on and as you have said they are available on Amazon and seem to get great reviews.

In Scotland the machine is provided for you if you are medically reviewed as needing it, but they are only supplied with the over the shoulder case which I find is a… Read more

No worries,

I believe Etsy is an e commerce setup so will ship wherever worldwide and O2 totes is based in the USA so maybe still worth a look if you can’t find anything on eBay.

Currently sweltering in Scotland, not used to three weeks of 21c temps!….I had too look out T-shirts Lol.

Cheers

keep us posted on the search

Scott

Hi Mal,

I have been looking into this also for my g5 and there are a few options out there.I wanted something that would hold the POC without the bulk or extra storage space that I wouldn’t use.I really just wanted something that would sit comfortably on my back allowing me freedom too exercise around my local parks.

Inogen themselves do one… Read more

Apologies, the book is called Breath, not breathe!

I got the author right at least.

Hi,

I was recently at an appointment with my consultant and another Dr and the conversation came up about reading suggestions for those with pulmonary fibrosis.The Dr, not my consultant mentioned a book called Breathe…the new science of a lost art by James Nestor https://amzn.eu/d/0gfRu0r

Whilst not specifically about PF or lung diseases I… Read more

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… 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… 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… 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… 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… Read more

Hi,

Have posted here a few times and have replied to several other posts.

Not an expert in PF at all and as a newbie have gained most of my understanding, or lack of from my own Googling!!

One of the best sites I have found for a good deal of info on the disease is the pulmonary fibrosis foundation.It has lots of information and best of… 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… 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… Read more

Hi,

Lots of info online about IPF and diagnosis and prognosis but not so much about those people diagnosed with ILD PF as a result of one of many hundreds of contributing factors.A lot of the articles just refer to PF as a blanket coverall for all PF which is confusing for a newly diagnosed individual.

Even on forums some of the topics… 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… 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… 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… Read more