I know that many PSCers experience fatigue on an ongoing basis, often affecting their ability to actively participate in their lives. What I did not know until I went through my transplant, is that there may be something more going on. After my surgery, I was diagnosed with a rare condition called Hepatopulmonary Syndrome, which causes the lungs to stop oxygenating the blood effectively, resulting in depressed oxygen saturation levels. Doctors are not sure of the mechanism, but it is directly associated with advanced liver damage, and occurs in a small percentage of patients with advanced liver disease. I was told that I had likely been suffering from this syndrome all along, but I had never had my O2 levels checked in my clinic visits. It is tricky because often oxygen saturation levels are often normal at rest, especially lying down, but drop quickly when standing, or moving around. A telltale sign of chronic low oxygen saturation is “clubbing” of the fingernails. If you are experiencing extreme fatigue, try to ask yourself if you are specifically short of breath, in addition to that feeling of tiredness and exhaustion. If so, ask your clinicians to look for clubbing in your fingernails and do something called a 6 minute walk test that can track oxygen saturation levels during exercise. If you are affected, you may need or benefit from supplemental oxygen to keep your saturation at a healthy level. The good news is that this condition is reversible after a successful transplant. I could barely make it to the bathroom or walk the hospital corridor at first (and not because of the post-op soreness) and was on oxygen for two months after my transplant, but the condition is now completely resolved. PSC can be hard, but if you suffer from low O2 saturation, there may be something you can do, at least for this aspect of our challenging disease.
Had never heard of that. Makes sense, thanks for the post.
Would a CPAP machine help?
That’s a good suggestion to consider Gary. Before my liver transplant I was diagnosed with complex sleep apnea and was having all sorts of rhythm issues with my heart as a result. I believe this was all tied in with the liver disease. They did 3 sleep studies on me till they nailed it down. I couldn’t use a CPAP or plain BIPAP but they ended up with an ASV Bipap also called VPAP. It automatically adjust the pressures based on my sleeping/breathing. It really helps with pulmonary issues and I’m still using post-transplant. I’d certainly consult with a pulmonary specialist.
I haven’t been tested for sleep issues but, only get 3 or 4 hours sleep at the most, if that. I can certainly relate to Tobataska’s post about feeling tired and exhausted all the time. I did some research and found this clinical post that covers the issue in great detail. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5132094/ I posted it on the on-line support page and will pursue it with my doctors. I also came across articles about oxygen generators and will look into that further as well.
I have been to a
pulmonary specialist and was diagnosed with very mild pulmonary fibrosis. He didn’t suggest any follow up or much I could do about it.
I really appreciate your quick response to my post and hope you have continued success with your VPAP.
Thanks again and be well, Gary