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Janet replied to the topic secondary symptoms related to IPF in the forum Diagnosis Information and General Questions 1 month, 1 week ago
I have had a few attacks of severe chills, shaking like crazy and SOB. Today it was after respiratory therapy exercise.During RT all O2 was all in 90s. In the car going home.had on a down jacket but hands, legs, arms and shoulders all shaking. O2 down to 85, and it took me a half hour on heating pad before I could type this. Sorry (but valiated)…[Read more]
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Janet replied to the topic Why do IPF patients lose weight and how to help in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 3 weeks ago
I wish I knew. I was slender before IPF and have lost 30 more pounds in the past couple of years. Food tastes bad, so I must force myself to eat; every meal is a battle. I also have GERD, as s many of us do, so I have diarrhea and gas. If I drink a nutrition shake mid-morning, then I can’t eat lunch. I look terrible and can’t find any clothing…[Read more]
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Janet replied to the topic Where do you live, receive care, and are you in a local support group? in the forum Polls & Quizzes 2 months, 1 week ago
Hi, and thanks to William for starting this thread. We live in Cypress, TX, which is a Houston, TX, suburb, and it takes about an hour to get down to the med center area, where I get medical care. I was diagnosed with IPF in January 2022, when we lived in Austin, TX, and have had escalating symptoms since 2018. Started taking Ofev Oct, 31, often…[Read more]
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Janet replied to the topic New Zoom meeting – taking the bull by the horn in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 1 week ago
I would be interested in joining the discussion. Thanks.
Jan
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Janet replied to the topic Dealing with Phlegm. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months ago
I’m trying Mucinex now. How long is too long to stay on it?
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Janet replied to the topic Dealing with Phlegm. in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 1 week ago
IPF for several years, just diagnosed January of this year. My cough was dry for years, but now I have terrible mucus. First I have a coughing fit that goes way down into chest, and then if I can put in a throat lozenge, it helps me bring up white mucus, then my nose is so full that I have to blow it repeatedly and continue to spit out mucus until…[Read more]
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Janet replied to the topic fits of cough in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 3 weeks ago
I used to have a dry cough with my IPF, but in the past couple of months I have had a sticky saliva mouth and cough up white phlegm, especially in mornings and at night, although I had a huge coughing, spitting choking fit today mid-day. I end up gasping for breath, mouth wheezing, tears streaming down my face, coughing more — it sounds awful and…[Read more]
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Janet replied to the topic CONFUSED BY LATEST LUNG FUNCTION RESULTS in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
I would leave a message on your husband’s patient portal or call and leave a message with a nurse or PA and pose your questions. Then let us know what you find out. All these cryptic numbers can be confusing to patients, and you have a right to an explanation.
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Janet replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 4 weeks ago
I understand. Since my husband started going with me to my appointments, he talks to family and friends more about my doc visits than I do. It’s good to have another pair of ears hearing all the docs can throw at you, and he takes notes too. Sometimes I feel like I’ve given up my privacy, which I don’t like, but overall I’m glad for the help. I…[Read more]
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Janet replied to the topic Is ipf genetic? in the forum Join the Discussion: Welcome to all PF/IPF Patients 6 months, 1 week ago
<p style=”text-align: left;”>My dad, mom, and aunt all had forms of PF. My dad smoked and died at about 85, my aunt and mom in their 90s (no smokers). My older brother, a nonsmoker, 74, had a bout with hypersensitivity pneumonitis a few years ago but it never became chronic. I am 70 and a nonsmoker, really struggling with NSIP, hoping I don’t ma…[Read more]
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Janet became a registered member 6 months, 3 weeks ago
Welcome to the PF forums Janet, we’re glad you found us.