Hi Gers man
Like you, I was pretty fit and worked out 5 times a week until the diagnosis. I was also very anaemic at that time from bleeding veins in my oesophagus. This was actually how I was diagnosed. I looked healthy so they had not suspected liver disease.
Gradually things became harder until even walking the dog up a hill would put my heart rate way above my ‘zone’. I also lost a lot of muscle mass as I got sicker and I had fluid in my abdomen from the disease so no me of my clothes fit, even though I weighed less! Also, I had no tolerance for tight clothes or wrinkles against my skin. The body image took a beating! :0)
There were also good days and bad days and if I did not listen to my body and back off on bad days, I experienced quite a bit of pain (body pain) at night. Sometimes my heart was beating so hard at night it would keep me awake!
The lesson I learned was that I had a serious illness and to listen to my body. I was used to over-riding the messages and exercising anyway, but this did not work for very long with PSC.
I think trying to stay fit helps, especially during recovery after transplant. But the disease stresses your body out so much, choose your battles carefully.
I am 2 years after transplant and just getting back to a decent level of fitness. Yay! It does come back…