Sara Tanner
Forum Replies Created
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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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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. Plans to travel to Grandkids & staying at camper. Don’t take diagnosis as definite. Only needs 2-3 ltrs when really active and/or sleeping ! Be positive & it’s a new diagnosis so each person’a progonis is different ! Not going to give up!!
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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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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 find somewhere else to go? Who will care for him? Our children have young ones & can’t be around it etc.
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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, Amazon etc. memberships. He can’t continue his Pulmonary rehab right now due to it being at our local hospital, so gracious friends loaned us a treadmill & bike for him to use. He really enjoyed getting up & out three days a week. I could tell a difference in his frame of mind & stamina after a week of missing. We’re cranking up I Heart radio with our old favorite songs& laughing at each other when we get cranky. We’re actually talking more & he’s not mindlessly flipping channels. These are scary times, so try hard to stay as active as possible mentally & physically at home & be thankful for those you are spending it with . Hope everyone stays healthy!!
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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 taking antibiotic/steroids etc., but after threes days became worse. He was hospitalized locally with around the clock breathing treatments, IV meds etc. etc. Still no improvement & was transferred to St Louis hospital Pulmonary ward. After days of blood work etc., they did CT of lungs & fibrosis immediately was found in upper lobes thus his diagnosis being Idopathic Pulmonary Fibrosis with moderate Emphysema. Ruled out autoimmune disease through rigerous blood work etc. They did mention lung biopsy was another test for definitive diagnosis, but it would have been too great of risk to test at that time. He’s been on OFEV for four months & much improved! Don’t give up & seek an answer & treatment that satisfies you! Good luck!!
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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 continue his same rehab regimen for $20 @ month after that.. 02 dependency has decreased significantly !!
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Thank you so much!! IPF is new to us & this interview answered and/or clarified many of our concerns & questions.
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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% output & CT showed no inflammation and NO progression on his IPF!! He is now only using 2/3 ltrs O2 when sleeping or active & NONE at rest!!
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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 foundation that per our income, we will receive it free for 2 years!! His required 02 liters & dependency at rest has decreased greatly as well as his recovery time! He had worked full time for 40 plus years & only retired due to 02 dependency etc. Waiting for POC to go through insurance etc. & planning on going back to work part time at 66 yrs !! old.