@danakelley
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Dana Kelley replied to the topic How Planning a Vacation Helps Me Cope with PF in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 2 years, 4 months ago
We are planning a trip in our Airstream in April for however long we want to be gone, not sure yet. We do love to go to the mountains. The last time we were there i had a hard time breathing and now I know why. Just thought it was something everyone had trouble with and just went on. I’m not on oxygen now but wonder what I could buy to have…[Read more]
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Dana Kelley replied to the topic Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) 2 years, 4 months ago
Day 7 taking OFEV. After a week of taking and reading all I can about IPF, I am beginning to relax a little. Knowing it’s a very unfortunate disease to have, I do believe you need to be as educated as you can, but I’m not an educated person so to speak. I struggle trying to understand the medical terminology I find and look up meanings. So far…[Read more]
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Dana Kelley replied to the topic Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 4 months ago
Hi all, well, this is my 3rd day on OFEV 150mg. After reading so much about the diet you must watch, I’m hopeful I can do it. (I love to eat). Just hate reading on the internet that we only have 3-5 yrs to live. My doctor straightened me out on that. I refuse to let this stuff ruin my life, after reading a lot of threads on here I see it is p…[Read more]
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Dana Kelley replied to the topic PF support group survey in the forum Polls & Quizzes 2 years, 4 months ago
One thing I haven’t seen here is sleeping with Cpap. I would get so tired in the afternoon 3-4 times a week, was just exhausted. Thought it was just because I had to work at breathing that wore me out. My pulmonologist suggested I get sleep study. I was having 10 disruptions and hr, so he prescribed the Cpap. I really hated the idea,I’d do any…[Read more]
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Dana Kelley replied to the topic Phlegm in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 4 months ago
Hello, I’m new on here and am learning to navigate the site. Question: does everyone have trouble tolerating the OFEV? I’ve read it’s a lot about your diet, so as I am starting my first dose tomorrow, I’m going to eat very carefully at first and gradually add foods as I tolerate. I’ve had this for 8 or more yrs and they’ve just put a name to i…[Read more]
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Dana Kelley replied to the topic PF support group survey in the forum Polls & Quizzes 2 years, 4 months ago
Hello, don’t really know what to say except I’ve been Diag with IPF 2 months ago. I feel I’ve had for 8 yrs or more, have been sob all that time. I think
it’s slow progressing. Just got my Rx for OFEV today. Will start tomorrow. I do admit I’m afraid because of hearing about so many unable to tolerate. I really am going to work on my diet…[Read more]
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Dana Kelley posted a new activity comment 2 years, 4 months ago
Thanks. I am anxious to see just how everyone tolerates this med.
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Dana Kelley posted an update 2 years, 4 months ago
My OFEV was just delivered. I have been educating myself and researching as much as I can on side effect etc. Tomorrow when I take my first dose I’m going to watch what I eat all day because diet will play an important roll in how my system will react. I have to make this work for me. Finding this site was a God send and I look forward to l…[Read more]
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Dana Kelley became a registered member 2 years, 4 months ago
You will do fine.