Bill Friedman
Forum Replies Created
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@marine1
I’m 82, diagnosed with IPF one year ago, and on 150 Ofev Q12 h. I play golf, walk 4 miles, and lift wts on alternating days. The Ofev makes me sick, but I have controlled it somewhat with fewer spicy, greasy, or sweet foods. About once a week I miss a dose if the gas or diarrhea gets severe. Try not to miss more than one dose a week. This disease is troubling, and I get out of breath frequently, but just keep doing what I’m doing. Have never used O2. I take daily PO2 readings on a finger meter, In the AM I’m usually at 96-97%. PM I go down to 94-96%. I can live with this in spite of the gloomy and outdated prognoses. Hope all of you are enjoying this brisk but glorious Spring. Best, Bill
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Charlene, ,
Got both on Internet; Hudson RCI inspirometer, and Mir Smart One Peak flow and FEV1 meter. Both inexpensive. The Mir device reads out on my IPhone with a permanent record of daily results. Really handy, and simple to use. Love your posts. Bill -
Hi.
My name is Bill, and I was dx’d with IPF last July. My Cardiologist ordered a High res CT scan of my heart, and sent me to a Pulmonologist who said my heart was OK, but the CT showed IPF. I’ve been on OFEV ever since. I hate that vile drug. It causes amazing amts of gas and diarrhea. I take an Imodium along with the Ofev, and that helps a little. The 3-5 year prognosis is scary, but so far, I still play golf 4 or 5 times a week, work out with weights 3x per week, and my O2 varies between 93 and 97. I bought a spirometer that measures FEV1 and FVC. It’s staying at 3 liters, or 100% of my predicted value adjusted for weight.’ I bought an inspirometer and am maintaining a 3300cc forced inspiratory volume. I only drone on with this boring history because I’m new to the forum, and hope I can participate as a an IPF veteran, awaiting Draconian deterioration, but hopeful I can hang around a few years, play with my grandchildren, play golf, and not have to worry about dying all the time. The very best to all on this forum. Bill