Thanks to everyone that responded.

Tammy,

Yes, I am currently on OFEV. Was just brought down from 150mg to 100mg after 4.5 years. I was having side effects develope so doctor reduced the strength.

Has anyone with IPF decided not to pursue getting a lung transplant? I have read in the forums all about transplants but no one has mentioned declining the procedure as an option. When I first was diagnosed in March of 2019, the first thing I said to my wife was I would not pursue the transplant.  We are both at peace with this decision. I am… Read more

Thank you everyone for your responses. Kathryn, I am so sorry for your loss, you will be in my thoughts and prayers. I will ask the doctor for numbers next I see him in October. Last time I saw my Pulmonologist he had me do a 6 minute walk test and I passed with flying colors. I told him my oxygen can sometimes get down to the mid 70’s if going… Read more

Thanks, Bill.  It sounds like your experience is pretty similar to mine.  No, I do not have a Spigometer and you mentioning it is the first I’ve ever heard of one.  I will ask about it at CVS the next time I’m there.  One of the bad things about this disease, you never know when an episode is going to happen.  Then soon after you’ll be… Read more

Has anyone out there have or had a shortness of breath, tightness of feel in the lungs but normal oxygen readings? My readings are normally in the mid 90’s and can get to the mid 80’s on my daily walk. I was diagnosed in March of 2019 with IPF and see my Pulmonologist twice a year. He just tells me I have not declined since my last visit and… Read more

Thank you for the suggestion. I will try that.

I have struggled eating healthy all of my adult life. I like fruits and vegetable but dislike salad, and salad is what all the experts push. Its very frustrating and stressful. My Pulmonologist wants me to lose some weight and I am trying. I am seeing a dietician but she just throws a bunch of papers at me and tells me to follow these rules. I… Read more