When I was diagnosed , my Pulmonologist suggested the two major drugs . So I researched them and discovered one made you nauseous and one gave you flatulence and diarehhea (sp?0 . Then I was advised I might get by for $6,000. “A Year ?” “No-a month”. So I said , to hell with that , and went on an oxygen concentrator. That was 9 years ago.…

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Define “High Altitude”. I’m a flatlander , living on the East Coast . My Home is 500 feet above sea level . . My O2 levels start dropping at 3500 feet above ground level (AGL) , and lately airline flights (Cabin Altitude – 8,000 feet) have become difficult , even with the setting on 3 or 4 LPM. Count yourself lucky . When your numbers start…

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I was diagnosed in 2017 . I’m 81 . A lung transplant is not in my future – way too old . OK – move on with the rest of your life , however long that is . Accept that you’ll go when God decides . Meanwhile , you have a life to live. As Red said in “Shawshank Redemption” : “Get busy living or get busy dying . ”

Yes . I’ve been diagnosed for 7 years now , and often have to loudly cough ( into my sleeve) . People often think its a sneeze and say “Bless you” . Usually it’s a series of three coughs . Just another way of Nature saying “you’re still alive – accept the Blessing”

I think an official diagnosis – for good or bad – is the way to go. I was short of breath for 30 years , then coughed, hacked and wheezed for a couple more years ( maybe more) before a CT scan showed opacities building and “crackles” in my lungs . So, I got the diagnosis , (IPF) and the standard 5 year “death /life sentence”, and a…

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Acupuncture by phone ? Must be long needles …

I’ve been diagnosed with IPF for 7 years now , and I’ve found Oxygen to be the one thing you cannot do without , I don’t know why folks are afraid to start using supplementary O2 to bring their Blood O2 levels up to somewhere near normal ( mid-90s). I had two Air Force reunions in Colorado Springs (elev. 6,000) and Cheyenne ( elv 7,000) and…

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I was diagnosed in 2018. and was given the standard five year sentence. I’ve noticed a progressive slide as my lungs get scarred. Now , my lungs sound like cellophane being crumpled . The only thing I’m doing now is sleeping with my Concentrator on at a low setting , and using the concentrator whenever I do anything strenuous , including walking…

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I’ve found bright lighting in the house , staying mentally active ( even if it;s on the computer) and when I’m really bummed , taking a long hot shower

I was diagnosed late in life at 75, – 5 years ago and given the standard 5 year death sentence . My Pulmonologist put me on oxygen immediately and on Palliative treatment ( read : check in every six months or so and do a Breathing test every 12 months to chart my downward progress. ) Rather than take whatever breathing machine Medicare…

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I’m sorry to hear of your husband’s situation .IPF is a strange Autoimmune condition that can strike anyone , any time,  at any age , and neither Patients nor Doctors have any real idea when it will build enough to cause termination since Progress varies by individual. I suspect the “Five Year Rule” is simply a handy check point , maybe even… Read more

I’d been having breathing problems for several years , and often ran out of breath trying to walk as fast as everyone else and keep up with tour groups . (I don’t exercise, so I figured I was just out of shape ). About 7 years ago, I went to two Veteran’s Reunions in Wyoming ( 6,000 feet above Sea level ) and CO (5,000 feet ) in sequence, I… Read more