- Short Bio
I am a widow, living alone on an island in Puget Sound with my two dogs. I was diagnosed with IPF in September of 2015, confirmed by VATS surgery. I was put on pirfenidone immediately.
For those 5 years I have been fairly stable except for one acceleration for which I was not hospitalized. I have lost function, but slowly. At this point I use supplemental O2 at night, when recovering from a coughing episode, and when I take a walk. Walking is difficult because my knees are very arthritic, but I do it when I can.
I feel very grateful for the medical care I am receiving, and for the special helpers who make it possible for me to live a fairly normal life, to remain on my large property, and to stay safe during this pandemic.
- Type of Diagnosis
- Lung transplantation status
- Supplemental Oxygen
- Best advice for PF symptom management
My most difficult symptom is the cough. The most helpful management tool for me has been hydrocodone. When the cough basically took away my quality of life – couldn’t talk, couldn’t laugh, severe muscle spasms which triggered severe headaches, massive fatigue, etc – it seemed worth trying. I have been using it for about a year, pretty much at the same dose.
Sometimes the cough changes in character and there is more phlegm and more pain with breathing. My pulmonologist has put me on a short course of prednisone when that happens (and an antibiotic as well the last time), which really helped.
- Are you currently taking an anti-fibrotic medication?
- How did you find us?
- How long have you or the person that you are caring for had PF?
Diagnosed September 2015