Thank you Steve, for posting George’s words. The description of “the end” is the best I have heard and it gives me a huge sense of peace. Even after he is gone, George is still “counseling” us!

I was diagnosed at age 57 with PF caused by Sjogrens Syndrome in 2019. I started Pulmonary Rehab in early 2020. We had a 7-week class, followed by optional maintenance classes up to 3 times a week. Some people have been in the maintenance program for 20 years! I am doing 3 times a week. It’s like going to the gym, but with the security…

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Hi Sally, I used to live at 6500’ elevation when I was diagnosed with IPF at age 56. I was on supplemental oxygen 24/7. We moved to 300’ elevation and I no longer need oxygen for daily living. I have been in pulmonary rehab for 3 years and I can now jog on the treadmill without oxygen! When I visit my old home, I have to use oxygen. When I…

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Hi Marisa,

The hydroxycholorquine has kept the Sjorgrens at bay.  I haven’t had any other symptoms such as dry eye or dry mouth, just the extreme inflammation in the lungs. I don’t really understand how/why it attacked my lungs, and didn’t feel the damage happening until it was really severe.  My rheumatologist says that “you will know” when… Read more

Christie, thank you so much for the information! I will definitely check out the other site and search Sjorgrens here.  Thank you also for the encouraging words!

Joy

Hi Marissa,

I too share some of your diagnosis.  I started noticing trouble breathing in 2019.  At the time I lived at 6500′ elevation, and was a forest educator, enjoying hiking, skiing, and a very active lifestyle.  After 10 months of testing, I was diagnosed with PF and ILD caused by Sjorgren’s syndrome.   I don’t have any symptoms of the… Read more

Hello Pat, after 9 months of mystery, I was diagnosed with the autoimmune disease Sjorgrens Syndrome.  It rarely attacks an organ and in my case, it attacked the lungs, leaving me with PF.  Have they figured out what your autoimmune disease is yet?

Hi Jay,

I know this is a very scary time.  The unknown is so horrible.  Like most others have said, diagnosis takes a long time.  I was spinning for 8 months until I found a rheumatologist (turns out my PF is caused my an autoimmune disease) who began to drive my care.  He insisted on all the detailed tests again and additional ones like a… Read more

Hello All!  I have been on prednisone for a year.  I started at 60 mg per day to reduce the extreme inflammation  in my lungs that originally caused my PF. The high dose was immediately effective for being able to breathe better.  I had all sorts of side effects – grew a goatee, beard, long hairs in strange places on my body, chipmunk cheeks,… Read more

Dear Charlene, I was SHOCKED when I read this news!  Of anyone who is extremely careful about social distancing, I would have thought there would be no way that the virus could have found its way to you.  I haven’t responded to any of the threads on this forum, but I read every day, especially during my 2 hour “anxiety awake” time during the… Read more