- Short Bio
I am a Colorado native, 2 kids, 2 dogs, 1 wife, 1 mortgage. Poet, music lover, weirdo.
- Type of Diagnosis
- Treatment / Medical Facility
- Current medication regimen
- Lung transplantation status
- Supplemental Oxygen
- Best advice for PF symptom management
Stay active, learn to breath, eat your dinner. It sounds dumb, I know. But, moving around – even just like me, with an active job – keeping your weight in the right bracket – too high, there’s too much to oxygenate, too low, you are malnourished – and learning to actively breath – slooooowly in, slooooowly out – these are the things that you can do. There are sometimes that there’s nothing you can do; so having actions you can take empower you.
Be bold fighting side-effects. Pirfenidone made me really sick, until they got me off the capsules and on the pills. But I waited to complain for way too long. Get some Zofran Odt (the generic is fine), take your meds with meals (kefir was a godsend), stay regular and timely with dosage.
Medical marijuana (edible) really helps. I do live in Colorado, where it is legal, and it has helped me keep appetite, and to relax. Really, it does work. Not CBD, get the THC; I prefer hybrids.
- Are you currently taking an anti-fibrotic medication?