[Mary Black]

I was diagnosed in 2005when my GP scheduled appt at Mayo Clinic Scottsdale. No symptoms that I was aware of. The Mayo pulmonologist said at that time I have 5 years if I’m lucky.
Several years nothing was happening and I actually thought I was given incorrect diagnosis. I retired, started part time retail, a few years before Covid. The nature of my work began making me aware of some breathlessness as I replaced returns throughout the store but still felt ok, had energy but very tired on days off. Started OFEV 2 years ago, horrible side effects.
I took a Christmas vacation from Ofev, had doc appt January and doc reduced my 300 total mls to 200 daily. I was better but then began having GI problems.
That’s where I am now, almost 79, oxygen at night(set at 2) don’t use portable during day at home but also don’t go out much in 115 heat in Scottsdale. Hanging in there, next appt August. More to come.

[Mary Black]

I was diagnosed in 2005when my GP scheduled appt at Mayo Clinic Scottsdale. No symptoms that I was aware of. The Mayo pulmonologist said at that time I have 5 years if I’m lucky.
Several years nothing was happening and I actually thought I was given incorrect diagnosis. I retired, started part time retail, a few years before Covid. The nature of my work began making me aware of some breathlessness as I replaced returns throughout the store but still felt ok, had energy but very tired on days off. Started OFEV 2 years ago, horrible side effects.
I took a Christmas vacation from Ofev, had doc appt January and doc reduced my 300 total mls to 200 2x daily. I was better but then began having GI problems.
That’s where I am now, almost 79, oxygen at night(set at 2) don’t use portable during day at home but also don’t go out much in 115 heat in Scottsdale. Hanging in there, next appt August. More to come.

[Mary Black]

I, too, stay inside as I find it difficult to catch my breath when outdoors.

[Mary Black]

I took ofev for 2 years with nausea/diarrhea. Stopped in December. I discussed with my pulmonologist- he reduced me to 100 twice a day.
Feel like I have my life back.
Unrelated but currently having GI problems with pituitary. (Hope not result of ofev).

My next pulmonary doc appt in August. I’ll report back with news.

[Mary Black]

So glad the info helped. This new info following my August doc appt.

Still on OFEV 200daily. Diarehea stopped, constipation began. Very difficult time. Followed OTC meds that helped constipation but GI pain began.

This lead led to GI consult, new med for stomach pain -Esomeprazole. Really helped. GI Also ordered scan indicating possible pancreatic problem. Endoscopy scheduled for October.

Also loss of appetite, weight loss. Getting nutritionist consult.

Although I generally feel better than I did with OFEV 300, still little energy, increased breathlessness, rarely go anywhere and even ordering groceries is too much for me. Most distressing is that I’ve lost ability (children say it’s too dangerous) to host our holidays and homemade Sunday dinners. (For those of you who never had this tradition in your families, you may not understand my loss.)

One more item…been challenged by keeping my condo clean and organized. I finally hired professionals to clean last week and have not felt this joyful in a long time. My spirits were, indeed, lifted. Will repeat on some type of schedule.

To all my IPFer friends, holidays coming, enjoy the moments and memories.

More to come.

[Mary Black]

When you stopped what happened?

How long were you off meds?

[Mary Black]

<li style=”text-align: left;”>I would welcome Zoom Meetings