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James replied to the topic Painful Sneezes since IPF Diagnosis. in the forum Diagnosis Information and General Questions 1 month ago
At any other time I would consider my sneezing to be funny, but the pain and overall bone jarring and teeth rattling is shear misery. The sneezing hits me with five to eight hard sneezes in rapid fire, so fast that they actually sound like one sneeze! My tongue gets caught between my teeth and my jaw slams in the same manor as the sneezing. I l…[Read more]
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James replied to the topic Congestion in the forum Ofev (Nintedanib) 4 months ago
I was diagnosed IPF in 2017. I am sure that I have expelled several dozen gallons of mucus since then. I use face cloths to cough into… they are soaked within an hour or so. Ofev 150 x 2 a day and Guaifenesin 400 mg x 3 a day to make coughs more productive, that it does…. it works better than nothing I suppose.
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James replied to the topic Telling your family in the forum Living with Pulmonary Fibrosis: 50+ 9 months, 2 weeks ago
my, next to telling my bride, that was really hard… no, rough to do.
My son and his wife, my two daughters and their husbands, each got a phone call as they live many miles away. I made sure their spouses were with them as I told them… as an engineer I tend to be frank, which I feel lessened the shock of a flowery explanation. I could h…[Read more]
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James replied to the topic For sale in the forum Using Our Forums 9 months, 3 weeks ago
15 years???? I’ll have what you are taking!! That is awesome and hope you have another 15 years.
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James replied to the topic Buying an Oxygen concentrator in the forum Diagnosis Information and General Questions 9 months, 4 weeks ago
first, get a prescription as the concentrator is considered a medical device and regulated by our wonderful, compassionate government….. anyway, I have an inogen one g5 i use all day long. I have batteries and wall power. it is good for 6 ltr hr pulsed. I fly quite a bit and you need one for flying, can’t use tanks. I had to pay for mine m…[Read more]
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James replied to the topic The Harsh Realities of Lung Transplantation in the forum Pre/Post Lung Transplant 10 months, 1 week ago
Mine is a strange story I guess. I was diagnosed in mid 2017, and started getting sick, coughing, vomiting, chest pains…. running the gauntlet of things that could be thrown at me. It turned out as was determined in late January 2018 that I was having heart attacks right at the time of the diagnosis. I had a triple bypass and an aortic va…[Read more]
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James replied to the topic Traveling with Pulmonary Fibrosis in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 1 week ago
I am a frequent flyer. I average for to eight flights a week. I have flown all but three weeks since January 2, 2022. I have flown virtually every week since the pandemic started and many many weeks before… years actually.
I was diagnosed IPF mid 2017 and given the usual 5 to 7 year prognosis. I was placed on oxygen and I managed to get h…[Read more]
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James replied to the topic Salty phlegm issue in the forum Using Our Forums 1 year, 2 months ago
sorry to say, but get used to the coughing and the endless phlegm. After taking the OFEV, I have about a 30 minute grace period before I cough to the point of vomiting. I carry a towel around so I have something to catch my product. My doctors have tried every combination of pills, capsules and sprays to stop the mucus and cough but nothing is…[Read more]
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James replied to the topic MRI to diagnose PF in the forum Using Our Forums 1 year, 2 months ago
I don’t know why it takes so long for a C.T. I have had the M.R.I. but my doctor says the C.T. has better definition. I get my treatment from the vet admin., and they are faster than my regular doctor for treatment.
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James replied to the topic Oxygen concentrators and travel in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
oxygentogo.com is who handles my poc via delta
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James replied to the topic Oxygen concentrators and travel in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago
The government considers the POC to be a medical device and only administered with a prescription from a medical physician. To sell it or trade it off to someone who does not have a prescription is considered illegal and can be prosecuted although I have not heard of anyone actually being arrested for it. It is based on a percentage of oxygen that…[Read more]
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James replied to the topic Oxygen concentrators and travel in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago
I have been flying with an oxygen concentrator twice a month for the last year. I have to call in to get my Inogen cleared each time I fly with my airline. Besides that, it is not a problem flying with them. You still have to wear a mask for the most part on the flights. I have to certify that I have enough battery power for at least one and a…[Read more]
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James replied to the topic Increased Throat Clearing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 10 months ago
I started with the clearing 2 years before I had a positive diagnosis. I have a solid cough, productive most of the time… my last CT shows a rather agressive progression since last year. I’m still here…. lol… Clive
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James posted a new activity comment 2 years, 10 months ago
t.y. just trying to learn more about this condition.
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James became a registered member 2 years, 10 months ago
You are welcome James. Jump in anytime if you have a question. Mark