Hi there.

I have always been a man for the gym. I used to do a lot of weight lifting then due to injury turned to lighter resistance and cardio. I started having problems last year while doing Insanity. I lost about a stone in weight which I was not needing. I have since put on most of that and started doing light resistance. I also walk my dogs 6 miles a day. I am wary about doing more cardio in case I lose more weight. I asked my doctors about exercise and diet and they did not stress any don'ts except contact sport. My problem is as with most of you is fatigue. Do any of you do lots of exercise and find it ok

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…

1 Like