We often see posts in our online PSC groups that highlight the frustrating unpredictability inherent in the lives of PSC patients and caregivers. Living day to day, knowing that, at any point, the rug could be pulled from under you is hard. One of our board members recently shared his personal journey of living with this unpredictability and we got his permission to share it with you. Fred is a post-transplant PSCer who was doing well, showing off his awesome scar and living life to the fullest. Unfortunately, about 4 years post-transplant, his LFT and ALP numbers started increasing rapidly and that familiar feeling of fear set in. For months, his numbers continued to climb rapidly. And then, this….
Fred: “I want to share with you first the recent improvements that have been so dramatic as to defy description. For reasons unknown, my LFT numbers have improved (decreased) nearly 1000% percent in the span of just 6 weeks. No one pretends to understand the cause of this miraculous change; the medical team and I are just along for the ride at this point. Here is the picture worth a thousand words to illustrate the ludicrous changes I am talking about. I already have normal AST and ALT levels and ALP is near normal for the 1st time in three years.”
If you are asking yourself, “But does Fred feel better?” He will tell you, “Well, I certainly don’t feel worse; it’s like a 16 ton weight has been lifted off my shoulders – and my mind. I am uneasy that we don’t know why I have improved but I was equally uneasy when we didn’t know why I was getting worse so quickly. I’ll take this flavor of unease in a heartbeat.”
We can’t explain this turn of events either, but if the unpredictability of PSC has an upside, this is definitely it. We love you Fred and we’re thankful you’ve been released from the cliff of insanity!
If you’ve had a similar experience, we’d love to hear from you. Feel free to share your “cliff of insanity” story in the comments below.