@wifeofipfpatient
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Sara Tanner replied to the topic Coronavirus Being Breathed In Through POC in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 8 months ago
Thank you Mike! I also got that answer for our new Phillips SimplyGo Mini POC “that the filter will NOT filter out COVID 19 virus particles!” My husband just got his, so it was all new to us.
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Sara Tanner replied to the topic Acute Exacerbations of Idiopathic Pulmonary Fibrosis (IPF) in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 9 months ago
So no symptoms until diagnosed with “pneumonia” not viral/bacterial etc. in Oct. 3019!! COVID-19?? Still don’t know?? Labor Day wk end became breathless ! 02 sat only 81% when standing!! Diagnosis 3-5 yrs life span!! Black & white!! Don’t think so! But recovery was amazing!! Now husband only using 2 ltrs 02 when sleeping!! Just got portable unit.…[Read more]
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Sara Tanner replied to the topic Coronavirus Being Breathed In Through POC in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 9 months ago
Thanks Steve! That is very valid concern! My husband just got approved for a POC this week! I will contact the manufacturer when we receive the unit.
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Sara Tanner posted an update 2 years, 9 months ago
Husband is still tolerating OFEV well after 6 months. I was wondering what price difference for Esbriet compared to OFEV? Retail for OFEV in MO was $10,500. @ month for 60 tab of 150mg. We were fortunate enough to find foundation to pay for 2 yrs!
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Sara Tanner replied to the topic Mental Health & COVID-19: A Check-In in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 10 months ago
We are very worried. So what happens if my husband or I contract COVID19 ? He is diagnosed with IPF & I have no health problems. If he would get it & he’s not hospitalized & quarantined at home, how do we keep the other from catching it?? If I would contract it & be quarantined at home, how would Zi keep him from catching it? Woyld I need to fi…[Read more]
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Sara Tanner replied to the topic Finding Some Good Amidst the COVID-19 Crisis in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 10 months ago
So while I’m lucky enough to be working from home & “social distancing” with my husband that has IPF , we’re getting creative with our time together at home. He is having Sports withdrawal! Ha Hooked up that Xbox that we never use & are doing stretching & NASCAR racing. 😉 We’ve scheduled dedicated movie time together utilizing our Netflix, A…[Read more]
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Sara Tanner replied to the topic Definitive test for diagnosis? in the forum Diagnosis Information and General Questions 2 years, 11 months ago
I’m so sorry you are going through this! I can’t imagine how frustrating that would be!! My husband had absolutely no symptoms of cough & shortness of breath until a bad bout of pneumonia. He did have history of smoking for years, but had stopped 7 yrs ago. Xray only revealed small spot of pneumonia in one lung. He started as out patient at home…[Read more]
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Sara Tanner replied to the topic Pulmonary Rehabilitation & IPF in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 11 months ago
Oh my goodness! Pulmonary Rehab has been such a blessing with my husband’s IPF!! Gets him up & out the house three days a week. We are fortunate to have such a supportive and positive staff at our local hospital. He is up to almost 1 mile on treadmill & can tolerate stationery bike for almost 2o minutes! Medicare only pays for 36 weeks, but he can…[Read more]
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Sara Tanner replied to the topic An Interview With a Pulmonologist in the forum Diagnosis Information and General Questions 2 years, 11 months ago
Thank you so much!! IPF is new to us & this interview answered and/or clarified many of our concerns & questions.
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Sara Tanner replied to the topic Alcohol & Anti-Fibrotics (OFEV & Esbriet) in the forum Esbriet (Pirfenidone) 2 years, 11 months ago
My husband has been on OFEV for 4 months with no major side affects. He is a beer drinker & his Dr said as long as his liver panels stayed in range, there is no reason he couldn’t drink beer on occasion. He drinks a couple at night. So far.. So good.👍
Also since his pneumonia is gone & taking OFEV , his PFT showed an increase from 62% to 87%…[Read more]
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Sara Tanner replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 2 years, 12 months ago
My husband has been taking 150 mg 2 x day since November 3, 2019. He’s tolerating it well. His diagnosis was on Oct. 1, 2019 of moderate IPF & severe Emphysema after a bout with pneumonia. CT showed “ground glass”/hardening of lung tissue in upper quarter of both lungs. The retail price was $10,500 month. We were referred to OFEV OPEN DOORS…[Read more]
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Sara Tanner posted an update 2 years, 12 months ago
Update on husband’s symptoms now that the pneumonia is gone. He has gone from 3-5 L at eat & 8-10 L with activity to 0- 3 L at rest & activity! We are in the lengthy process of getting a poc!! He has been going 3 days a week to Pulmonary Rehab. (Totally last recommend this!) using treadmill & stationary bike. Much more energy & LESS shortness of…[Read more]
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Sara Tanner posted a new activity comment 3 years, 3 months ago
Thank you! This is all new to us & we are a bit scared & overwhelmed! Just can’t believe it happened so fast with no warning. We were preparing for retirement, bought a new camper etc etc & now he’s oxygen dependent at 4 ltrs at rest & up to 7/8 when walking. . Hoping for info & emotional support . Thanks!
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Sara Tanner became a registered member 3 years, 3 months ago
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Hello Sara, welcome and thank you for joining your pulmonary fibrosis forum.
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Thank you! This is all new to us & we are a bit scared & overwhelmed! Just can’t believe it happened so fast with no warning. We were preparing for retirement, bought a new camper etc etc & now he’s oxygen dependent at 4 ltrs at rest & up to 7/8 when walking. . Hoping for info & emotional support . Thanks!
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Hi Sara,
I’m so glad to hear your husband is still tolerating Ofev well, that is excellent news. Thanks for the update! Unfortunately, due to Canadian healthcare covering the anti-fibrotic drugs for the most part for us, I can’t really speak well to the cost of these medications. The information can likely be found on the manufacturer’s site for…[Read more]