![](https://pulmonaryfibrosisnews.com/forums/wp-content/uploads/buddypress/members/0/cover-image/64ef446ba2156-bp-cover-image.jpg)
![Profile photo of Kay Kagy](https://pulmonaryfibrosisnews.com/forums/wp-content/plugins/buddyboss-platform/bp-core/images/profile-avatar-buddyboss.png)
Kay Kagy
Biography
Name | Kay Kagy |
Nickname | kay-kagy |
Year of Birth | 1941 |
Location | Oregon |
Relationship | Patient |
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 | IPF |
Treatment / Medical Facility | Good Samaritan Hospital/Portland, Oregon/Dr. Jackson |
Current medication regimen | Fibrogen in past and now Ofev |
Lung transplantation status | ineligible |
Supplemental Oxygen | yes |
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? | yes |
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 |
Privacy Policy and Terms of Use | I agree |