Karen Bowen
Forum Replies Created
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PF is an umbrella for so many Interstitial lung diseases. Since I developed it – & yes I say DEVELOPED it – I’ve researched it inside & out. I’ve met people that have had it “comfortably” for 15 years. Others 5-7. And then the 1-3. Depends, I believe, on when diagnosed & what the underlying exposures or medical condition is/was. PLEASE get a few opinions on treatment. I’m outside of Boston & am lucky for the Hospitals we have.
I took Esbriet for a few month, no real problems but was switched to Ofev – no problems. Don’t wait for your “GP” to make a diagnosis, it’s not his expertise……
You will do fine. Keep a positive attitude & don’t worry until you’re given something to worry about!
Please take a look at https://www.ildcollaborative.org/ This is outside Boston & works with Brigham & Women’s & MGH. The program & information covers a lot of facets of the disease.
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Hi GreatfulDeb….. I went thru Boehringer Ingelheim for OFEV, filled out the financial aid info & I got it for free. I’ve Medicare & BCBS. Boehringer was a much quicker turnaround than dealing with Genetech (who tried to block Sandoz from developing & making the generic Esbriet).
You do need to go thru your Doctor. They took the paperwork & submitted it for me. Took all but 2 weeks. The form is on their site. If you’ve a proactive Doctor, he’ll push it thru, mine did.
Best of luck! I’ve been on it for almost 3 months now & no ill effects – Karen
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Joing in better late than not at all!
I’d been on Exbriet for 3 months & had no side effects until recently. My doctor cut me back to 2 pills 2x’s a day but the lack of energy & dizziness only improved a bit. I asked him if I could take a break. It’s been 10 days & I’m not feeling any different – dizzy, no energy basically still. He has ordered by the Ofev but I’m not starting it until I can see if I do feel better off the Esbriet after 6 weeks (my next appt) or not. If there’s a big difference in how I feel, I may try the Ofev. If not, well – the devil you know is better than the devil you don’t know.
With the Esbriet, the only food restriction is grapefruit juice. With the Ofev, its spicy foods, high-fiber foods, milk or milk products – which I get most of my protein from yogurt, cottage cheese, cheese, etc. Not sure if I want to have that many dietary restrictions.
Any feed back / experiences?
Thanks – Karen
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Hi again….. I’m on 4lpm myself & when my stats crash I have to sometime bump up to as high as 7lpm, 6 at the least. Doesn’t give any of the tanks much life. There is something called an oxymizer that can be used to conserve oxygen. I believe you need to be tested for it to make sure you’re a candidate for using it. Your RT will test you.
***If anyone reading this understands more anouth them, pls shoust out 🙂 Karen
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Hi Natalie! YES! the Spirometer will exercise your lungs & help with expanding their capacity. My Pulmonologist and the doctors I’ve encountered at the hospital all have told me to use it. My PT & OT have also pushed me to use it. “At every commerical” they tell me. Our disease is one of progression so if this helps keep the dogs @ bay, it’s worth the try! The Voldyne Spirometer is what they’ve handed me @ the hospital (I have a plethora of them!) & they’re around $12.
Keep the faith – Karen