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Scott Robertson replied to the topic An interesting book in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 days ago
Apologies, the book is called Breath, not breathe!
I got the author right at least.
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Scott Robertson started the topic An interesting book in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 days, 5 hours ago
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 t…[Read more]
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Scott Robertson replied to the topic Good site for information on all things to do with PF in the forum Diagnosis Information and General Questions 3 weeks, 1 day ago
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]
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Scott Robertson replied to the topic ILD PF and terminal prognosis in the forum Diagnosis Information and General Questions 3 weeks, 3 days ago
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]
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Scott Robertson replied to the topic Diagnosis of IPF in the forum Diagnosis Information and General Questions 3 weeks, 3 days ago
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]
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Scott Robertson replied to the topic Diagnosis of IPF in the forum Diagnosis Information and General Questions 3 weeks, 5 days ago
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]
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Scott Robertson replied to the topic Good site for information on all things to do with PF in the forum Diagnosis Information and General Questions 3 weeks, 6 days ago
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
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Scott Robertson replied to the topic Good site for information on all things to do with PF in the forum Diagnosis Information and General Questions 3 weeks, 6 days ago
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]
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Scott Robertson started the topic Good site for information on all things to do with PF in the forum Diagnosis Information and General Questions 4 weeks ago
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 all…[Read more]
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Scott Robertson replied to the topic Diagnosis of IPF in the forum Diagnosis Information and General Questions 4 weeks ago
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]
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Scott Robertson replied to the topic ILD PF and terminal prognosis in the forum Diagnosis Information and General Questions 1 month ago
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]
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Scott Robertson started the topic ILD PF and terminal prognosis in the forum Diagnosis Information and General Questions 1 month ago
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 will…[Read more]
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Scott Robertson replied to the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 1 month, 2 weeks ago
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]
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Scott Robertson replied to the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 1 month, 2 weeks ago
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]
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Scott Robertson replied to the topic Very confused! in the forum Diagnosis Information and General Questions 1 month, 4 weeks ago
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]
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Research and Development 2 months ago
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