Janet
Forum Replies Created
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I love good poetry and Mary Oliver’s poems specifically, have a huge volume of her work. I also admire the work of Rita Dove, Elizabeth Bishop, Wordsworth…don’t get me started.
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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 that fits me. My pulmonologist says that right now my weight is more concerning than my IPF. I have worked with a nutritionist and am following her suggestions as best I can. I don’t know where to turn.
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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 followed by Imodium for the side effects. I have been part of a PF Warriors support and a Houston-based group, both online. I have been feeling rough, but my O2 saturation is still in the 90s, so no oxygen yet. Some days I can still get in a short walk, but it really strains my breathing. I’ve lost around 30 pounds over the past two years and most of what I eat tastes like cardboard, but I’m trying to keep eating because my docs keep telling me to. My husband is taking on more and more and doing a great job, but I worry about his burning out. We are going to a family reunion over Thanksgiving for three days, and I’m worried about how I’ll do.
Oh, shoot, all I have done is complain! I’m sorry. Positivity: I’m sleeping better than I was and Greek yogurt takes pretty good. -
I would be interested in joining the discussion. Thanks.
Jan
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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 I’m done. I’m on IBS medications and flonase and ipratropium bromide sprays. Sometimes a Neti pot is helpful.
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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 makes me panic. I can barely get a sip of water down for a while after the worst is over. Nothing I have tried helps much, including codeine cough syrup and benzonatate capsule. In the throws of an attack I can’t even hold a cough drop in my mouth or sip water. I will ask my pulmonologist about alternatives at my next visit.
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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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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 think anyone who loves you would understand if you said, “I’m not ready to talk about it yet.” Sometimes I tell my husband I’m not ready to share some new info from a doctor visit with my grown kids, and we both zip it for a while.
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<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 make 80!</p>
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I have many favorites, but perhaps my top pick would be “I Worried.”
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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) to hear others experience this.
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I’m trying Mucinex now. How long is too long to stay on it?
