Janet

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]

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]

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]

I would be interested in joining the discussion. Thanks.

Jan

I’m trying Mucinex now. How long is too long to stay on it?

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]

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]

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.

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]

<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]