Biography

I was diagnosed with IPF about 2017. This was the first time I had been diagnosed with something I would die of and not with. When I was told the stats I simply asked, “You are talking about a Bell Curve, right?” I was stable at 80% lung function for the first 2 years after diagnosis. I started taking a turn for the worse and got started on OFEV May of 2019.

It’s good to check your BIO from time to time! My Doctor had me check in for a lung function test April of 2022. She told me I am stable again and that as long as I can tolerate it, I could live for 10 or more years. WOW, that sounded great to me. I had problems with some side effects but I’m tough. I can handle it. After that I found that the foundations that supported me with a $ 0.00 co pay all this time were approaching $ 0.00 as well. Then within the next few months I was told I no longer qualify for the makers of OFEV Foundation grant. I had a half a bottle left and I had just figured that the pills I had left for $17 each. After this the 60 pills would be around $46. each x2 per day. My husband who doesn’t say much unless it really needs to be said, “I don’t know why you take that stuff. You are too sick to really get to do anything anyway.” He was right about that. I was having more trouble all the time so I thought I wish for Quality of Life the quantity was doing me no favors.

I did two things after that. I bought a book on Kindle and wept through the first 5 chapters. It helped so much. It was a good reminder to be kind to yourself. The second is I went off the pills and it only took a day and a half and I felt better.

I found renewed strength and it worked for me to stop. I ended up painting scenery and painted character faces for a local play. One of my favorites, THE WIZARD OF OZ. I did over do it a bit because I suffered an exacerbation after and suffered it – like an idiot for 8 weeks. Finally I wrote my rheumatologist and asked if he would recommend a good Ear, Nose & Throat Dr. He prescribed some appropriate antibiotics and a Dr. that, like him knows about some of my other diagnosis’s. I am sporting 2 auto-immune diseases.

For me this has worked out the best. I am living with joy today. There is a price to pay but I am good with it. I enjoy what I do and am learning how to let go and to live life my way. My husband makes pretty good points.
Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You