Charlene Marshall

Hi @mary-ward

I’m so glad to hear some of this dialogue and the responses have been helpful! Of course no one can say for sure or speak to our life span with any sort of certainty, but I agree: positive thinking and optimism can go along way in navigating life with a chronic illness for sure .Taking care of ourselves both physically and mentally…[Read more]

Hi @sunderraman

Welcome to the PF forums, I’m glad you’ve found us and hope you find this platform helpful. There are a few people on the forums with HP and I’m sure they’d be happy to connect with you. If you go to the main forum page ( https://pulmonaryfibrosisnews.com/forums/ ) and then in the “Search Forums” text box on the right hand side,…[Read more]

Hi Eleanor,

No problem, I’m glad to hear they might be helpful to you in keeping others up to date on everything going on. CaringBridge is particularly helpful with that! Sounds like your husband is very lucky to have you, and I certainly agree: no additional work is needed for caregivers, you all do so much for us patients already. Thank you!

Charlene.

Hi @renee

Thanks for writing though I’m really sorry to hear of your IPF diagnosis, and your siblings experience with this cruel disease. Like you, I think it seems too unusual for there not to be a real genetic/familial link that MDs are aware of. I’m hoping to better understand this link and the genetic component and am brainstorming a couple…[Read more]

Thank you to everyone for sharing your experience with the GLPG1990 trial, and that you’ve been notified of it stopping. I was so sad to read/hear this news, and can imagine you’re all feeling the same way. Please continue to share any updates about this (from credible sources) as you come across them. Such a pity!
Char.

@juliebug

Hi Joe,

Welcome to the PF forums. I’m glad you found us and hope you find this site helpful. There are a lot of wonderful people on here who are willing to share their stories, answer questions, etc.

Regarding Ofev and Esbriet, there are a lot of discussions on this site about these two drugs and personal stories of patients using…[Read more]

I’ve had a very similar course as you Jacki, especially with the Ofev and having to go down to 100 mg vs. 150/mg. Glad you’re tolerating it well and that you can continue to do the things you enjoy. Thanks for sharing 🙂

Hi Sharon,

Thanks for sharing a bit of your story with us, though I’m really sorry to hear of your Mom’s struggles and your subsequent IPF diagnosis. Sounds like COVID was the cause of getting your diagnosis, I hope you’ve recovered okay from this cruel virus and I hope you remain stable for a long time!
Feel free to write anytime.
Charlene.

Hi @meraltemel

I’m so sorry to hear of your Mom’s exacerbation and subsequent intubation. That is so tough! If you want to direct message me ( https://pulmonaryfibrosisnews.com/forums/members/charlene-marshall/ ) I can share a bit more with you about my recovery from an AE. I’ve also had the unfortunate experience of being intubated, and there…[Read more]

Hi @pammckee

Welcome to the forums! I’m glad you found us, though sorry you have to be here with a new IPF diagnosis. I did want to chime in quickly to assure you that the 3-5 year prognosis is not for everyone! Actually, that data was released before the anti-fibrotic medications were approved by the FDA for use to help slow the progression of…[Read more]

Hi Sam,

I don’t personally have any experience with Wei, but I do know some members have tried it can likely share what their experience was like with the herbs. @steve-dragoo and @denny-eliassen do you mind sharing?

Hi Kathleen,

I know my co-moderator @mark-koziol will able to speak to one of these facilities. I don’t believe it was for a second opinion, but he can likely share his experience with you about one of these ILD clinics. I’ll let him chime in when he can and hopefully that helps you a bit 🙂

Charlene.

@warlock

Hi Bill,

Thanks for sharing, this is interesting information about liquid oxygen. It’s so hard to obtain here where I live! Keep us posted on whether the cost increased next bill, I’d be curious.
Char.

Hi Vishal,

So glad to hear your Dad’s GI issues have subsided a bit, that’s great news. I hope it remains this way for him! I’d speak to your Dad’s Pulmonologist if you can re: the deterioration in breathing. It may be weather related, but it might be good to rule out any type of acute issue like infection, virus etc. I am not a physician and…[Read more]