Dana Kelley
Forum Replies Created
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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 with me to help out.
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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 I have no side effects, and since my anxiety has subsided, I must say I’m feeling really good. The only complain I have on here is not a lot of people are posting they can take the OFEV with not a lot of side effects and I must admit, this is what alarmed me at first. I’m walking a mile every day and have been for 2-3 weeks and seem to be able to breath better. I do better when temps are in the 50s. My diet is good and do eat 5 small meals a day, watching this very close. I’m so grateful for this site, thank you.
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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 possible to live a normal life, other than climbing mountains (and that’s not normal) ha. I’m exercising, walking, yard work and my husband and I are RVers. I am his caregiver, he has slight dementia, insulin diabetic and has 3 small strokes in 2020. He’s doing real good so we are still going to travel. I’m not on oxygen, my stage is mild/moderate dr said. I’ve had difficulty breathing for 7-8 yrs, now I’ve been diagnosed. I’m hopeful the OFEV can slow the progression. I love my pulmonologist and feel he’s going to watch me closely. We’re going to live hard, until we die! I’m still searching the site to gather all info. Thank you all for shearing. Looking forward to seeing good results on here about OFEV.
(I’m 69 and hubby 70). -
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 anything to get some energy back, so I got set up with it. I’ve had now for 6 weeks and can, just now, see a big difference. Yes it does take some getting used to, there are times you want to jerk that thing off. I couldn’t just use for more than 4 hrs, Medicare will pay for if u use 4 hrs a nite. Now I’m up to 6-8 hrs and am really starting to see a difference. I sleep deeply. Just FYI
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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 it. IPF. Dr said very slow progressing for me, but who knows future. Now I’m mild/moderate is what he said. Hopefully OFEV will work for me. After reading everything I can from every source I am afraid. I’m really a strong woman and will not succumb easily. Any support is greatly appreciated.
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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 so I can take. So thankful I now know what I have, so I can deal with it the best I can. I’m in between the mild/moderate condition. I guess I just need to hear from someone who has had many yrs like me and which the OFEV has helped. I know everyone is different. Thanks, Dana