Mike Monson
Forum Replies Created
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That’s a great one John!
Mike
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Hi Chris! Your right, IPF is different for everyone. I grew up at home with a dad that smoked 3 packs of lucky strikes everyday. I smoked myself from age 12 until in my 50s. I have been a welder. Auto body painter and was subjected to agent orange during Vietnam. I suppose that’s why they call it idiopathic. They just don’t know. I also have small fiber neuropathy and so I lean toward the Agent Orange as a real possibility although I’ll probably never know. The VA is good about treating my symptoms but they sure don’t want to admit any wrong doing on their part.
I’m too old for a transplant and don’t think I’d do it if I could. I’ll leave that to the younger folks. Good luck to you Chris!! -
I was diagnosed with IPF about a year and a half ago. Every 3 months I have a CT scan of my lungs and a PFT test. Low and behold unknown to my doctors at the University of Utah my symptoms have greatly improved. I no longer use oxygen. I am 78 years old. The scarring will never go away but my symptoms have greatly improved!! I attribute my success to a good diet, weight control and exercise.
I’m sure that I could have an exacerbation down the road but for now all is well. I was on OFEV for 6 months but couldn’t handle the side effects. The university is trying to get me qualified for esbriet but so far my insurance has shot me down.
Anyway…with all of that said there is hope for all. Have a great day!
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I have a JY-101/JY-101W oxygen concentrator. They’re between 2 and 3 hundred dollars. I really like it and it’s small. Bought it on line.
The portable inogen machine requires enough breath to trigger the oxygen release so you had better have the doc give you advise before buying it.
Mike
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I also have an electric bed that allows me to sleep elevated and I have no issues with runny nose. My problem has been dry nostrils. I have IPF and I’m on 2 liters of oxygen at night.
Mike
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I’m new to this congestion every morning as well. I just thought that I had a slight head cold. My congestion usually starts in the evening and gets worse by morning. I’m on 2 litters of oxygen at night. I have IPF and I am on OFEV.
Thank you for your post!Mike