Bill Mattila

I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char.

I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char.

Gayle, I love the ending to this post as it made me laugh. Thank you! Puppies are the best and I’m glad he’s become a positive topic of conversation for you 🙂
Take care,
Char.

Hi Julia,

Thanks for sharing your thoughts on my post … I completely agree: talking about the disease all the time is tiring both emotionally and physically and its hard to convey just how serious it is. Hang in there and know that we’re hear for you on this forum.
Charlene.

@zebra4018

Hi Mille,

Thanks for sharing – sounds like you’re well-equipped to handle power outages while using oxygen, which is great. I’m you’ve notified your service providers too, that is a step a lot of people forget. One other thing that eases my mind, which people maybe don’t think of, is accessing the car as a power source for our 02…[Read more]

@gefki

Hi Glenn:

I was very intrigued by your post as I am an avid watersports fan as well. I enjoy kayaking and paddleboarding, though I run out of breath while trying to keep my balance standing on the paddleboard; its just as fun sitting down or kneeling. I take my oxygen with me on both devices! I use a D-sized cannister (the new term for…[Read more]

Hi Jane,

Thanks for contributing your thoughts and experiences to this thread; lots of information shared here about Zinc. I’m glad to hear your doctor encouraged you to try it, as their seems to be mixed physician thoughts on its use. Also glad to hear you’re tolerating Esbriet – I know the gastrointestinal issues can be really bad from Ofev.…[Read more]

Thanks for sharing your experience Dennis and wishing you goodluck on your upcoming breathing test. I have one at the end of July too! Campfire smoke bothers me a lot as well, and I always have to sit downwind of it if I join my cousins around the fire at the cottage. Glad to hear you think Ofev is helping you though! Have you tried the sublingual…[Read more]

@vmcurrie62

Hi Virginia,

Thank you for being so vulnerable and brave with sharing how this disease is impacting you. I hate it too, and I’m so sorry you’re dealing with it!
Earlier today someone told me that it was refreshing to simply hear someone say they hate IPF and it was equally therapeutic for me to say. Please don’t ever feel like you…[Read more]

Hi @sharonmacmillan

Thank you so much for sharing this information, I have no doubt that it will be extremely helpful for others! I really appreciate having this information myself too, so thank you.
Charlene.

Well said Norm! I find this forum so helpful because its filled with people who truly “get it” and what its like to live with this terrible disease.

Please don’t anyone feel like you have to apologize for venting – we’re here for you!
Char.

Hi Phil,

I often have trouble sleeping but its because my mind races vs. symptoms of this pesky illness. I actually take a melatonin – very low dose – every night to help me sleep and shut my brain down. Mindfulness helps me too; not for everyone but something that is effective for me. May be worth talking to your doctor about in case its somehow…[Read more]

I am also curious about this Charles, and would love to hear from anyone who has spoken with their physician about zinc.
Char.

Oh interesting @philipryan… I am also curious as to why she advised against it? Did she give you any insights into that?
Char.

@pbesio

Hi Pete,

Wow, thank you so much for sharing your experience with the generic version of Esbriet and the respective costs; it’s always so helpful to hear a first-hand experience. I hope this number reflects the real cost on the bill as well! So happy for you with the reduction of this astronomical cost for this drug.

Char.

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]