Are you sure you want to remove from your connections?
|Year of Birth||
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.
|Type of Diagnosis||
|Treatment / Medical Facility||
Confluence Health, Saba Lodhi, MD,1215 S Miller St Wenatchee Wa 98801
|Current medication regimen||
OVEV 150mg 2 times daily; Omepresol 40mg daily; Vitamin B3; D3; and NAC 1800mg daily | plus – [ ] VALSARTAN TAB 160mg. 1p/day am; AMLODIPINE TAB 5mg
|Lung transplantation status||
|Best advice for PF symptom management||
2019 I use Oxygen at night. I have used oxygen when I try to work or exercise but find pacing myself and resting when needed work better for me. There are times, now the weather is colder, I need to plan for oxygen use and take a break and get out of the cold. My body temperature has been lower than standard for years now. A body temp of 96.8 is normal for me and sometimes lower.
Update: 2023 I use oxygen all the time now. I have an Inogen oxygen concentrator. Used it until I found a deal on a replacement. I bought a bigger one that lasts longer and is heavier but still not as heavy as an oxygen bottle set up. I use a back pack carrier for both of them so I can do stuff. The sling over my shoulder is no good for me.
I paint murals. I love to paint big. I am working on a 10′ by 30′ and love it. I have a little help. A gal that wants to learn what I know and we really enjoy working together. She is a Gift. Every day is a Gift. I have a great dog that is my constant companion is a Gift. My husband and family are great and (yup) Gifts. I am living in joy and I am grateful.
|Are you currently taking an anti-fibrotic medication?||
|How did you find us?||
PF News Website
|How long have you or the person that you are caring for had PF?||
I think I have dealt with IPF for many years. I was diagnosed about 4 years ago due to having about 80% lung capasity.