Cisco Rafael

Thanks for sharing your story with us, Nina! I’m glad you sought out a second opinion from another doctor as well as I was shocked to read one actually gave you a year you’d likely live until – that’s absurd in my opinion. Glad the second doctor was so helpful and that you proactively took care of yourself by doing things like putting in the swim…[Read more]

Thank you all for sharing your personal experience with Zinc, along with your opinions on the article… I found it very interesting as well! Similar to Chuck, I’m curious if anyone has brought this up with their doctor and obtained any feedback? It’s a credible article from a reputable site so hopefully a physician out there will read/listen to…[Read more]

Here it is Doug:

https://www.cedars-sinai.org/newsroom/zinc-found-to-play-an-important-role-in-lung-fibrosis/

I agree @christie-patient… this article was super interesting to read, not something I’d heard of before, even though I knew of many of the other benefits.
Char.

Hi Millie,

Oh this is interesting, thanks for sharing! I had similar thoughts as you but glad to hear it’s helpful. I know a lot of people struggle with diarrhea on Ofev so this is good information to have and share.
Take care,
Char.

Absolutely unfair! Great words Denise, thanks for sharing!

Thank you for sharing Denise, it’s always refreshing to hear of positive experiences with physicians and how they can help us on our journey. Sorry to hear you’re dealing with pain, but glad you have a good doctor in your corner.

Take care,
Char.

@anne-tarantino

Hi Anne,

So nice to hear from you! Thanks for writing and contributing to this thread, though sorry to hear your PF is getting worse and your husband is picking at you. It’s so hard for others to understand what feeling short of breath and/or exhausted all the time is like, and on the flip side, it’s exhausting for us to navigate…[Read more]

Hi Jeff,

Thanks for writing and contributing to this topic thread. Wonderful to hear your work from home situation has been conducive to you being able to continue working. That is great and I’m glad you haven’t been faced with the decision whether or not to stop working. I am lucky as well and have a very flexible workplace, and am primarily…[Read more]

@philipryan

Hi Phil,

Thanks so much for sharing your thoughts on this topic, and for your insightful perspective. I know some people will find it comforting to read your words for sure 🙂
I was the facilitator for Noah’s new book and we discussed religion a lot. There are some references to it of course in some of the chapters written by authors…[Read more]

Thinking of you Rhonda as you navigate the next stage and figure out what is your new normal. Certainly not an easy task. Thanks for sharing your story and know that we’re here for you.

Take care,
Char.

@vmcurrie62

Hi Virginia,

Thank you for taking the time to write and contribute your thoughts to this important thread. I remember your story of being a cardiac nurse, and the difficulties you’ve faced in your profession following this cruel diagnosis. I’m so glad first of all that you aren’t experiencing any side effects of Ofev, that is…[Read more]

Hi Debra,

Thanks for contributing your thoughts to this thread. It certainly is hard to find that balance of acceptance and being thankful; it’s a process that sometimes I feel like I’ve done well and other days not at all. Everyone processes things differently, do you think you and your husband could work through it with the help of a…[Read more]

Hi David,

Thanks for contributing your words to this topic thread. Cruel is one word  I often use to describe IPF, so I certainly agree with you! Thanks for sharing.

Char.

Hi Phyllis,

Underdiagnosed is most certainly (and unfortunately!) a good word used to describe IPF. Thanks for sharing.
Char.

So true Tonya, I can imagine many others can relate to this post like I can! It almost seems impossible to me that a diagnosis like this can’t erode some mental health difficulties so its so important to take care of ourselves and each other! Thanks for writing and keep in touch.
Char.

So nice to hear from you, Don! Thanks for writing and contributing to this important but difficult thread. I really appreciate hearing the perspective you now have on your stressful practice and your decision to stop working, especially with it being in hindsight and having an opportunity to reflect. I know many others will also appreciate this as…[Read more]

Hi Heather,

Thanks for writing and contributing to this thread, it’s so hard to work with 02 and manage this disease! If you use the search function of these forums (right hand side of the main page) and type in the keywords you’re looking for, such as “disability” or “payments” some threads may come up with the information you’re seeking. Just…[Read more]