[paul-b-lakeland]

Hello, I can’t believe your pulmonologists have not suggested Ofev or the other specialty med that slows the progression. I used to cough really bad. That has subsided. Please get another opinion. I traveled 2 hours to Univ of Fl to get a second opinion and I could not be happier with my team there. Let me know how it goes. Paul B ~ Lakeland, FL

[paul-b-lakeland]

Hey Mack,

I’ve been on 150mg twice / day for 2.5 years.

No major problems, mostly diarrheal issues, which can be managed with diet.

Just saw pulmonologist today, she said my lungs are damaged but stable.

Good luck. Paul B

😖 🍌🍞 😉

[paul-b-lakeland]

I am 70 years old. When I was first diagnosed 18 months ago, I knew nothing of PF.

This site has provided a ton of important information – use it.
Get a second opinion – I found a special team of doctors that provide excellent care. They are a pulmonologist, a rheumatologist, another a gastroenterologist.
I started Ofev as soon as possible, and believe the benefits far outweigh the side effects.
My cough was bad for the first 6 months, but got better with time.
Try to live one day at a time – Some with PF live much longer than the averages you may read about on the web.
I can still do everything I used to do, but slower now.

Hope this helps!
Paul B ~ Lakeland, FL

[paul-b-lakeland]

For 22 years, I was exposed daily to fumes from plastics processing. Sent SDS (Safety Data Sheet) information to my pulmonologist. Will discuss during my next visit.

[paul-b-lakeland]

Reflective
Unknowns
Limiting
Mindfulness

[paul-b-lakeland]

So far, all my days are good days since I am only about 1 year since diagnosis. I suppose there will be some, if not many, ‘not so good days’ in the future. If I remember that every day is a gift, and stay truly grateful for all the people that God has put into my life… family, friends, coworkers, and unbeieveably talented doctors… it’s hard right now to imagine a ‘bad day.’

[paul-b-lakeland]

I would be cautious to assume the OFEV is the primary cause of lower 02. Definitely check with Pulmonologist.

[paul-b-lakeland]

Will those of us who participated in the poll, get to see cumulative results??
Paul ~ Lakeland

[paul-b-lakeland]

Hi Ron,
Diagnosed 10 months ago. I’ve been on OFEV 6 months. No drop in O2 level yet.
Paul – Lakeland

[paul-b-lakeland]

Allergy testing would be helpful, as it was for me. Peace of mind to know.

[paul-b-lakeland]

Hi @davidota
I am sorry you have to go ‘underground.’ I feel that as long as I’m masked and 10 feet away from others, I’m relatively safe. Let me know how it goes. Thanks!
Paul B.

[paul-b-lakeland]

When I drive on the Intersate and get stuck in stop-and-go traffic, I realize that I am part of the problem. When I take an exit, the problem is a little less for the others.

I try to ‘live and let live,’ meaning I try not to get upset by things out of my control, and let others do whatever they have a right to do – even if, in my opinion, it is wrong.  In person, I try to acknowledge others’ stance without engaging in argument. Do I want to be right, or do I want to be happy?

I believe this attitude helps me maintain some measure of inner peace which I also believe, helps my overall health stay as strong as possible.

[paul-b-lakeland]

Hi Pete, Like Bob, I set permanent alarms on my cellphone for 9am and 9pm everyday. I then also stop whatever I’m doing to take my OFEV. I use the daily treatment journal that came with it faithfully, checking the box and time I took it. Hope this helps. Paul B – Lakeland

[paul-b-lakeland]

Hi Liz, My PCP had me using Spiriva at first. I thought it helped. Later, my pulmonologist told me that the ingredients in Spiriva have little or no effect on PF, but if I am more comfortable with it, keep using it. She later prescribed Albuterol. I have an Rx for that now but do not need it frequently. Hope this helps. Paul B – Lakeland

[paul-b-lakeland]

I’m 69, live in Lakeland FL. Was diagnosed with IPF 4 months ago. Taking OFEV 150. No nausea, mild GI irregularity. Enjoying life one day at a time. Going to Univ of FL pulmonary dept next week just for confirmation of all tests and bloodwork. My pulmonologist also in Lakeland. No support groups here, but will do zoom group next month. If anyone lives close to Lakeland, please let me know.
Thanks!

[paul-b-lakeland]

Having had Covid last December, then frequent cough for 4 months, then PF diagnosed, I wonder if the Covid kind of ‘kick-started’ the PF? Has anyone heard of a similar path toward PF diagnosis?  Thanks!   Paul in Lakeland

[paul-b-lakeland]

Hi Randi,

I too had Covid Jan 2021. Then initially diagnosed with IPF in the spring, then NSIP in the summer, then IPAF last month.  Slightly improved outlook with each new diagnosis. If you wish, feel free to message me for discussion of clinics etc. that have helped me.

Regards,  Paul

[paul-b-lakeland]

Kathleen,
Thanks for your response. It’s somewhat comforting to know that others have been on the same path. Wishing you the best.
Paul

[paul-b-lakeland]

Pete, 9am to 9pm works best for me. I’ll have a small snack at 9pm with the Ofev just to be sure my stomach isn’t empty. Paul

[paul-b-lakeland]

Hi Bruce, I started Ofev 2 months ago. I am 69 years old so I’m on Medicare thru United Healthcare. AARP Medicare Advantage Focus. I applied for the BI (maker) grant, but was declined as we are over the income limit. Bottom line – $2,700 for first month, then $600 every month thereafter out-of-pocket. Hope this helps. Paul B – Lakeland