Roger Cecil
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<p style=”text-align: left;”>I found mine quite by accident. During my Wellness Check (old people’s Physical) in 2021, the hospital offered a special for $99 for a CT scan of the heart to check for problems. When the scan results came out, it was noted that while my heart was fine, they detected an increase in scarring of my lung tissue compared to a CT scan that had been done on my heart (showed lungs also) in 2016 for AFIB. They recommended that I see a pulmonologist, which I did, and thru further tests and a biopsy they determined that I had IPF. They, then, determined thru blood tests that I had GPA Vasculitis that they believed was the cause. This diagnosis was later disproved thru later blood work months later, and the root cause was believed to be long term use of Amiodarone for my AFIB. As of late, other than some shortness of breath, I feel pretty good. I try to exercise thru walking and I have really cleaned up my diet. Like others suffering this insidious disease, I’m taking the recommended medications (OFEV and low dose prednisone), vitamins D3, C, Calcium and Zinc) and just living my life as normal as I can.</p>
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I was diagnosed about a year ago and, outside of a little shortness of breath, I haven’t really had symptoms. If a random CT scan of my heart for diagnostic reasons hadn’t identified scarring on my lungs, I wouldn’t have known. I feel blessed and am exercising, taking my meds and vitamins, keeping up with my vaccinations and hoping for the best.
Best wishes for you staying symptom free! -
I have also been blessed with headaches in the morning, but I also attributed them to not drinking enough water. I don’t get the headaches every day, and when I do, I get up and drink a glass of water and go back to sleep or just get up. It seems to help albeit may be that I want it to help. Hard to explain. I sincerely hope yours go away soon.
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My sister died in 2010 from COPD at age 60 (heavy smoker). My older brother was diagnosed with IPF in 2016 and had a double lung transplant 8 months later, and is ok, but in a weakened condition now (Parkinson’s disease) from agent orange exposure. My father always had lung problems. I was diagnosed this past August with IPF, and blood tests revealed very rare GPA Vasculitis which seems to be attacking my lungs.
So….I think there is a genetic component to IPF, but also think environmental and other health issues play in to it. Right now, I’m off of the anti-rejection drugs except for low dose Prednizone. Will have more blood tests next month to see if I need to go back on the other anti-rejection drug. As a side note, other than some shortness of breath, I feel pretty darn good.
Roger
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I was diagnosed with PF and Wegener’s disease this past August. I just recently started on OFEV and am tolerating it well. I am also on Prednisone. In addition, I have AFIB and take Eliquis daily for it. My doctor is aware of my meds, but has not altered my dosages. I will check back with my team to see if I need to make any changes. I really appreciate your posts.
Roger C