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Ross Harris replied to the topic Oxygen Questions in the forum Diagnosis Information and General Questions 3 years, 1 month ago
Thanks to Robert, Bill & Karen for the very helpful comments and advice. I have a call in to my pulmonologist and I am prepared to ‘crank it up’ to the point where I get the oxygen I need. Ross
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Ross Harris replied to the topic Oxygen Questions in the forum Diagnosis Information and General Questions 3 years, 1 month ago
I was prescribed an InogenOne G5 about ten days ago with an initial setting of 2 0n the device. The G5 is portable and I thought that it would likely provide enough oxygen to keep my SPO2% above 90% while walking at an average clip, for about thirty minutes. It turns out that my expectation seems to be wrong as my SPO2% drops into the low 80’s.…[Read more]
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Ross Harris replied to the topic Sudden onset of IPF? in the forum Diagnosis Information and General Questions 3 years, 1 month ago
David:
So sorry to hear of your mother’s IPF diagnosis. I lost my ninety year old mother on June 19, 2019, from cardiac arrest triggered by IPF. The breathlessness can present quickly and increase. It may be very difficult to get your mother to eat properly and keep her weight on. If your mother is immobile, mine was, her muscle tone may well…[Read more]
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Ross Harris replied to the topic Just Diagnosed in the forum Using Our Forums 3 years, 1 month ago
Hello Mel:
I’m sorry to learn of your diagnosis. Mine was November 12, 2019. My mother passed away on June 19, 2019, from IPF. Your experience with appetite and the metallic taste is consistent with my own experience. It’s vitally important that you maintain a healthy weight and a healthy level of physical fitness. I am on OFEV, which calls for…[Read more]
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Ross Harris replied to the topic Mental Health & COVID-19: A Check-In in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 3 years, 2 months ago
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Ross Harris replied to the topic vipf in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 2 months ago
There are only two drugs approved for the treatment of IPF in the United States. One is Esbriet (pirfenidone) and the other is OFEV (nintedanib). Esbriet requires a dosage escalation over a couple of weeks before settling down to three doses a day. OFEV is two doses daily at the same time each day. Both drugs are very expensive. You might ask your…[Read more]
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Ross Harris replied to the topic Nintedanib… Dosage in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 2 months ago
Sarv:
I was diagnosed with IPF on November 12, 2019 and started on OFEV on November 29, 2019. My dosage has remained at 150 mg, thus far. Talk to your wife’s Pulmonologist to find out if there might be a drug sponsor program available for her.
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Ross Harris became a registered member 3 years, 2 months ago
Hello Ross, welcome and thank you for joining your pulmonary fibrosis forum!