New Member - Progressive Pulmonary Fibrosis

[Aerobics-Instructor]

I'm posting for my Mom, who is 88 and lives with me. She was diagnosed a year ago with ILD- Fibrosis. She's on oxygen 24/7 ( but only 2 liters). Her O-sat falls rapidly whenever she walks even just to go to the bathroom, often to 86 -- or lower if she's getting dressed or taking a shower, etc, even seated. ( It's gotten a bit worse in the past month or two). She's about to start on Pirfenidone, finally! Took forever to get insurance to approve it. I'll keep you posted on how it goes. We are all taking a 2 week cruise to Hawaii in a month (my husband's 93 year old Dad as well), so we hope she's adjusted to the drug by then. (You only live once.)

CY

[Karenanne61]

That's good you've finally got the perfenidone. I love your final sentence! We do only live once and should be fully living. (As best as we can) 🙂

[Aerobics-Instructor]

Update. I learned that 'insurance approval' meant she is allowed to pay $2,000 a month copay to get it. Sigh. Now we are working with the drug company's foundation (Genentech Patient Foundation) to get it free. Thank goodness for that. I'll believe it when it happens.

[Aerobics-Instructor in reply to Aerobics-Instructor]

Good news-- she's approved for Genetech's patient assistance (free Pirfenidone). Bad news - mom caught a cold and now her O2 sat falls to 58% whenever she just gets up to go to the bathroom. Very scary. Started prednisone again today but no improvement yet. Cranked her up to 4 liters of oxygen but no real improvement. She has 'air trapping' in her lungs so I'm afraid of CO2 build up if I turn oxygen up too high. Is that a concern, or not? I know it is for COPD but not sure if so for IPF (with air trapping). Does anyone know?

[Aerobics-Instructor in reply to Aerobics-Instructor]

Update: Two hospital visits later. Had to cancel the cruise. -- Mom is now on 3 to 4 liters when seated and 6 liters+ when doing any activity. Can't use a pulsed-ox machine. Must be on continuous (home-machine or tanks). In a wheelchair all day except during 15 min of PT, and transferring to toilet, etc. Been on Pirfenidone for 3 months. Condition seems stable over the past month. Pulmonary Fibrosis is the pits!