Anna Jones

You’re welcome.  I’m glad to know they will post it on the site afterwards.  Thank you for that info!

I got this in my email today from the Pulmonary Fibrosis Foundation:

PFF is sponsoring a PFF Disease Education Webinar on Progressive Pulmonary Fibrosis:

“What Patients Need to Know” on Sept. 14 at 1 pm CT

Addressing the progression of PF in patients with interstitial lung diseases (ILDs) other than IPF (like radiation-induced pulmonary…[Read more]

Margaret, Thank you so much!  You’ve explained so much, so very clearly.  You have summarized it all so beautifully.  I didn’t know about the risk with intubation for anesthesia.  Important to know.

Now I’m thinking I really might need that CT scan, and not put it off.  I did have COVID (had Paxlovid which helped tremendously) so maybe I need…[Read more]

Natalie,  Just wanted to say best wishes to you, too!  My PF is also from breast cancer treatment (3 years ago).  I also learn a lot from everyone sharing here.

Take care, Anna

Anne,  Regarding your questions about what I know about Prednisone: it is used by many docs to treat inflammation in many different parts of the body, like to treat a bout of inflammation in the intestines for someone with Crohn’s Disease.  Many people on here share that they are prescribed Prednisone for brief periods and some people take it d…[Read more]

Hi Anne,  Thank you so much for your kind words.  I don’t talk with many people about my PF so this forum is a wonderful relief valve, and very informative and always supportive.  The support is the best, and I benefit from supporting others, too!

I’ve done some “deep diving” into medical journal articles and online videos.  (Sloan-Kettering has…[Read more]

Hello Anne,

I am 64 years old and was diagnosed with radiation induced PF in 2019.  I have had 3 pulmonologists and none of them have provided or suggested any treatment.  (My current doc is in a Center of Excellence for pulmonology.)  From what I can understand, the Ofev or Esbriet treatments are not appropriate for this type of ILD.  I am cur…[Read more]

PFCareGiver,  I recently found out  from my GP that I have collapsed nasal valves – which has been making breathing more difficult and causing nasal drip.  It came on slowly.

Try this test – buy some of the nasal strips (ex: Breathe Right Nasal Strips) that people use to open up their nose while they sleep and to prevent snoring and have your mo…[Read more]