Dennis Broetzman

All really good points @chas2712 – definitely important to consider your personal medication regimen before decided whether or not you can safely consume alcohol. There’s so much for us to consider so its always important to discuss first with your treating physician. Thanks for taking the time to write and contribute to this conversation…[Read more]

Thank you for sharing this experience @wendy-dirks, though I’m so sorry you had to navigate that as well, and sorry for your loss. I appreciate hearing from others’ who understand the deep self-compassion and grace that its taking to cope with this personal loss. I will add those books to my reading list – which tends to be really long these days…[Read more]

I absolutely agree with you @ebeth! The 3-5 year prognosis was published and made public before the two FDA antifibrotic drugs were approved, so the data is very much outdated but unfortunately its still readily available on Google and many other sites. Hope you continue to do as well as possible with this disease, thanks for sharing a bit of your…[Read more]

Hi @kathleen,

Thanks for sharing your mental health and chronic illness advice following my post. I agree with you; counselling would be a piece of advice I’d share with others and encourage them to give it a try as its so hard to navigate our feelings in the presence of our friends and family members sometimes. Sorry to hear sharing with your…[Read more]

Hi Jim

IPF sucks. I was diagnosed 5 years ago(at 55) and have been on Esbriet for 4 years.  Very little lung decline🤞.  Initially had some stomach upset and sun sensitivity lasted a bit longer but now manageable with sunscreen(mostly on hands) and a big hat when I golf.  No idea if Esbriet  has helped but will definitely will continue taking it.…[Read more]

Thanks for your kind words and suggestions @christie-patient. Always lovely to hear from you and your perspective. I didn’t realize that is what was happening; grieving in the public eye of a small community but you’ve absolutely nailed it. I appreciate your thoughts and YOU, thanks for writing.
Char.

Thanks for sharing your thoughts, Fred. I agree – so important to speak with the family members about the person who died as a person-first, not victim of this disease. It’s hard when we’re living with the same disease I find.
Take care,
Char.

So sorry to hear this @wendy-dirks! I hope you’re doing a bit better since you wrote this? Thinking of you!
Char.

Hi @ellebleu

Sorry to hear of the frustrations and pain you’re navigating. It seems unlikely that a 5th pulmonologist will give you answers that 4 already haven’t, but you can always consider a second opinion. I know some people who are prescribed pain meds, but its not common based on my understanding for those of us with IPF/PF. Not sure if…[Read more]

Dear Rajesh,

I am so sorry to hear about the loss of your mother, and am sending you lots of love to surround you. May the memories you have together carry you through this difficult time, and know that our forum community is here for you. I’m glad this site was helpful, and I am hoping your mother is resting now and breathing freely.

Kindest…[Read more]

Thanks for sharing your thoughts with us William! That is an easy visual for others to understand how difficult this disease is for us.

Char.

Thanks for sharing your 4 words with us, Gordon! I too am hopeful (for a cure). Take care, Char.

@ellebleu

Hi Elle,

Thanks for sharing your thoughts with us and contributing to this thread. I’m so sorry to hear of your experience with GERD too, how awful. Unfortunately, this is a common thing a lot of people with IPF deal with, and there have been some good forum discussions about it. If you look on the right hand side of the screen you’ll…[Read more]

Has anyone had experience taking quercitin? Supposed to help immune support, respiratory health and now many people have started taking it that have covid.
Stay well.
Rob

Thanks for sharing your top 4 words with us, Paul!

Certainly agree with your choice of words Denise. Thank you for taking the time to share with us. Know we’re here for you!
Char.