Bill Mattila

I have been on two inhalers since I was diagnosed with IPF .   I really appreciated Richard Shelby’s explanations (which my pulmonologist is terrible at).  I take Arnuity Ellipta inhaler and also Ventolin once a day.  Once in a while I have an asthmatic-like response to coughing or an irritant in my throat and need to use the Ventolin on the spo…[Read more]

Agree with his very much, Sue! The 13 months that “I couldn’t have IPF because I was to young” robbed me of time with the anti-fibrotics. Take good care of yourself.
Char.

Hi Denise,

It sure is! I try not to judge, as I know people have their own habits and/or coping strategies but I am just not tolerant of the smell of cigarettes anymore… it makes me cough, gag and I just can’t stand it. You’re totally right, it travels and even comes back to the workspace on the colleagues who go out and smoke; it is ultimately…[Read more]

Hi @jthunt,

Thank you so much for your kind words and the reply to this post — hearing others’ experiences with this and also not understanding is helpful to me. As much as I feel like I’m sometimes being pushy or demanding by wanting this issue addressed and corrected, I also know I need to protect my physical health. I have landed in the ER…[Read more]

Hi @amber

I agree with Denise @gunz12345 re: a second opinion. Not saying your doctor’s isn’t correct, but its always reassuring to have a second opinion, and I know lots of patients on Cellcept or who are otherwise immunecompromised (like myself) who have taken the vaccine as the benefits outweigh the risks. Have you received it since you made…[Read more]

Hi Hans,

Very good point and I certainly respect everyone’s opinion on researching and trying any/all potential therapies to help with this cruel disease! Do keep us posted on your decision and how it goes for you too, always helpful and important to hear from others. Thanks for writing and I too hope a cure will be found for all of us soon.
Char.

Hi Paul,

Welcome to the PF forums and thanks for sharing a bit of your story with us. I’m really sorry to hear you have PF following COVID – have they officially said it is COVID-induced PF? I have heard of this happening unfortunately as the virus can cause permanent damage/scarring in the lungs. I think there the understanding around this is…[Read more]

@obleek

Thank you so much for sharing this information Rob! I know it will be helpful to many as navigating when/how/who qualifies for the third shot can be confusing.

Take care,
Char.

@masonryt

Hi Dave,

Thanks for joining the PF forums and sharing a bit of your story with us. I haven’t personally been on the NAC supplement for my IPF, but I do know others who have. Thanks @steve-dragoo for commenting and I’d love to hear from others who have personal experience with this. The weight loss, albeit not easy with IPF due the…[Read more]

Hi @mikepapa

Thanks for sharing your findings – we learn so much from others this way! I’ll keep you updated on anything I find, and please do let us know what your pulmonologist says if you do speak with him about the salt inhaler.

Take care,
Char.

Hi Jim,

Thanks so much for your note – always great to hear from you, though so sorry to hear your IPF has progressed to PAH, that is hard. I know I and others on these forums really appreciate hearing what helps clear the lungs and throat, based on patient experiences so thanks for taking the time to share that as well.

Keep in touch and keep…[Read more]