Dave

Thanks for sharing Linda. I certainly agree with you!

Thanks for sharing your thoughts with us, Jeff. So important to stay positive as you say and I am watching for a cure on the horizon as well. Too many people have suffered from this damn illness!

Thanks for sharing Ron!

@corgiavenger

Hi Chris,

Thanks for sharing, though so sorry to hear you’ve been dealing with aching joints and muscles. I’ve heard a lot of people say its likely due to being chronically under oxygenated and our muscles/joints having to work harder, but that’s a hypothesis and not proven (to my knowledge). It’s likely connected to IPF somehow,…[Read more]

Thanks for sharing Chris!

Definitely frustrating! Thanks for sharing, Annette.

Thanks for sharing Rod.

Cruel and relentless are words I often use to describe IPF in my columns as well Karen. Thanks for sharing.

Thanks for sharing Mary Jane, I definitely agree with your word choices!

No fun for sure Christine. Thanks for sharing!

Certainly an accurate description, Dave. Thanks for sharing!

Hi Joe,

Thanks for writing and sharing both yours and your daughter’s experiences with these darn pulmonary diseases. I’m sorry your both dealing with this, and I think I’d also be curious as to any genetic / familial tie between the two. Unfortunately, this isn’t something I know much about but I do know there are some Foundations exploring the…[Read more]

Hi @ernie-kully,

So nice to hear from you! It feels like a lifetime ago we were able to connect at the PF Summit in Texas, doesn’t it? Thanks so much for writing!

Sorry to hear you dealt with a recent exacerbation, that’s terrible. Do you know the cause, was it “just” disease progression or something viral? COVID has really changed my lungs…[Read more]

Hi Kris,

Only a physician can advise whether or not Ofev can help with sarcoidosis. I’ve not heard of anyone with this condition on it; a friend of mine has pulmonary sarcoidosis and she was not given Ofev but I know the uses for this drug are expanding. However, I wouldn’t feel confident in anyone advising you about this unless they were a…[Read more]

Hi Theresa,

Thanks so much for writing, though sorry to hear you’re dealing with a new diagnosis of IPF. Know you aren’t alone; this forum is full of wonderful people who can provide support because they’ve been there. Poke around at the different topics and let us know if you have any questions.
Take care,
Char.

@rmcfarla

Hi Rand,

Thanks so much for writing although I’m sorry to hear you’ve been diagnosed with an interstitial lung disease and have to start Ofev. It was a tough drug for me to get used to; a lot of GI side effects and figuring out what types of things triggered those issues for me. Dairy is something I have to stay away from since…[Read more]

Hi John,

Thank you so much for writing and letting us know what you thought of the book – it means a lot to us to hear feedback, either way, on what fellow patients thought of it. It’s nice to hear some of the main takeaway’s from readers, and I’m glad the importance of exercising was something you noted, John. That said, it’s so much easier said…[Read more]

@gordonbsand

Hi Gordon,

Thanks so much for purchasing the book and letting us know what you think of it. Reviews are always welcome, and we hope its helpful for you! Thanks for writing 🙂
Char.