Kay Kagy



Year of Birth






Short Bio


Diagnosed in 2015 with IPF.  Went on 2 year clinical trial with Fibrogen-good results.  However, because it was Phase 2 they made us stop the trials.  Experienced a fairly significant drop in stats by early spring (off trial in November).  Pulmo doc wanted to do a second round of PFT’s in 6 weeks-did that and showed a slight drop.  I went on Ofev 150 in July.  Stayed on for 3 months-had recheck of stats and showed significant improvement (back up to trials stats).  However, drug caused severe diarrhea and weight loss and a limited life style so dropped to 100 where I am today.  Still fight diarrhea but not as bad and not as sick.  Weight loss has slowed but not stopped.  However- my feelings are without the drug of hell (lol) I will die sooner so I press forward taking it.  It’s now December so hanging in there.  Always looking for a new trial drug that will accept Ofev AND not go by way of my gut as can’t take any more worsening of diarrhea and I think any drug that goes through the intestinal tract will have similar side effects.

Type of Diagnosis


Treatment / Medical Facility

Good Samaritan Hospital/Portland, Oregon/Dr. Jackson

Current medication regimen

Fibrogen in past and now Ofev

Lung transplantation status


Supplemental Oxygen


Best advice for PF symptom management

Have a great pulmo doc, follow his orders if they work and if not-discuss.  As I have no cough I don’t have an issue there.  I do have a bi-pap at 1.5l at night, 02 for flying, rehab.  Look for clinical trials as without us using them this disease will never find a cure.

Are you currently taking an anti-fibrotic medication?


How did you find us?

PF News Website

How long have you or the person that you are caring for had PF?

IPF-Dx in 2015. Doc thinks I have probably had it for over 15 years

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