Do you, or have you had, pulmonary disease associated with PSC?

How many of us have issues with our lungs?

If so, what do you experience, what tests have you had, and/or what have you been diagnosed with?

I’ve been coughing, hoarse and with congested lungs for about eight months now. A lung x-ray six months ago, notoriously imprecise of course, showed nothing. Thus far my doctors have been of little help. (“Do have have mold in your house?” "It’s reflux… PND… etcetera.)

I am 65, was diagnosed with PSC in 1991, last surgical wedge biopsy at stage 3 ten years ago, initially improved on Vancomycin but many of my symptoms have returned, liver enzymes are still lower than before I began Vanco, although of course it’s impossible to know without a liver biopsy.

I’m sort of freaking out as I was a two pack a day smoker for about twenty-five years, although I quit almost thirty years ago.

I don’t have COVID.

Any feedback would be much appreciated.

Gratitude to all,


1 Like

Yes, I’ve been diagnosed with pulmonary fibrosis after a full chest MRI. I’ve never smoked and was always very athletic before contracting PSC in 1997. I’ve had a total colectomy and then a liver transplant in 2004. The fibrosis flares up once in a while but disappears after a couple of days.

1 Like

I had something called hepatopulmonary syndrome, which is a reduction in oxygen transfer from changes to blood vessels in the lungs, resulting in low oxygen saturation (like as low as 70%. It’s associated with liver disease and resolves with transplant. Doesn’t really sound like what you are talking about. Are you short of breath?

1 Like

No, Tobataska, no shortness of breath and my oxygen saturation is okay.

Lung CT Scan about to be scheduled and appointment with pulmonary doc, so I’ll know more after.

Thanks so much Gary and Tobataska for commenting.