Hi all,

I’m in the same situation, needing more than the Inogen G-5 can offer and finding only e-cylinders as a cumbersome and unsatisfactory alternative. I’m needing 10 lpm for any kind of activity, and an e-cylinder doesn’t last long at that rate.

Mostly, I just stay home. Grr. Let’s all keep looking and hope someone finds… Read more

I’m interested too. I’m in Berkeley CA

Charlene, yes, she is amazing. I am so very, very lucky to have had excellent and comprehensive Kaiser medical coverage through my and my husband’s jobs, and now from his pension. It’s literally been life-saving for us both.

Thank you for all you do here.

Warm regards,

Susan

Hi Charlene and all,

Yes, my pulmonologist did respond. Once earlier this year, my ankles were swollen, plus my heart rate was elevated (90s) and I was coughing more. She ordered a CT with contrast (to rule out pulmonary embolism), blood and sputum cultures, a course of antibiotics, and a course of prednisone. All tests were negative,… Read more

 

Hi Charlene and all,

Every time I see her, my pulmonologist checks my lower legs and ankles for swelling because it’s a sign of pulmonary hypertension, a serious complication of interstitial lung disease. But the swelling can also be caused by lots of other things. For sure, your doc needs to be aware of it.

Susan

Hi Paula and Charlene,

Thank you SO much for your really helpful relies! Sometimes when I have weird new symptoms, I feel like I’m losing my marbles, and finding others with similar reactions at least reassures me that it’s something real, even if not particularly desirable–one of the great benefits of a forum like this!

Sorry for such a… Read more

Hi Charlene, Paula, Al and all,

Thanks so much for all the useful information in this thread. I also have had what seems to be an allergic reaction to Esbriet.

After a few days on the lowest dose of 1vtab 3xdaily, I developed a flat red nonitchy rash on my lower legs. I called my pulmonologist, who said keep going, but stop if the rash… Read more