PSC

PSC......Kelly has PSC (Primary Sclerosing Cholongitis) It is a very rare liver disease that can be associated with UC (ulcerative colitis), which Kelly was diagnosed with about a year and a half ago. Kelly has struggeled with fatigue and pain ever since. In April his symptoms become more severe and his GI doctor decided we should do some more digging because he felt like something more than the UC was going on. A cardiologist, an internist, and one liver biopsy later we are here. Diagnosed with PSC. There is no medicine to slow it or stop it. There are no treatments for it. We just saw a hepatologist in SLC at the U of U on Thursday and he confirmed everything we have read and heard about PSC. Kelly will continue to become more fatigued, itch, have bone and muscle loss, lose weight etc until he eventually is sick enough to be placed on the liver transplant list. Right now the hepatologist said Kelly is fairly healthy considering the PSC. He does have some bone loss already and osteoperosis is setting in so he will be on high doses of calcium and vitamin d to battle it.

PSC has 4 stages and the doctor in SLC estimates Kelly to be in at least stage 2 by his liver biopsy but we will have a more conclusive stage after he has a special test called an ERCP at the end of September at the U of U.

PSC progresses rapidly in some and slowly in others so the doctor could not give us an estimate as to when Kelly would require a liver transplant. Some people can go up to as much as 10 years before needing a transplant while it can move quickly in others causing them to need a transplant after months. So we just wait! We live! We make memories to last a lifetime and we battle this awful thing called PSC.

Thinking about what could happen and what eventually will happen as far as his health goes scares me to death. The hepatologist said we have to fight! So fight we will. We will keep Kelly as healthy as we can with light cardio and weight lifting so that when the time comes for a transplant his body will otherwise be as physically healthy as it can be to go through the transplant process. The hepatologist said 1/3 of the people on the transplant list die waiting for a liver. So I encourage all of you to talk to your husbands, wives, parents, and grandparents about organ donation because every 8 minutes someone dies waiting for an organ and that has never been more real to me than it is now!

Thank you all for your prayers they are what is carrying us through. Keep them coming! We love you all and it is a bit humbling and overwhelming to feel wrapped in so much love from others. I am going to honest...I don't know that I have handed this with very much grace and I have spent a fair amount of time on my knees. Heavenly Father is sending us small miracles everyday and is showing me that He i walking right next to us through this. I can not count the number of times when I was feeling pretty low and sad over the last few weeks that someone has called, emailed, posted on my facebook, stopped at my house, or brought us in a meal just to let us know how much we are loved. Words seriously can not begin to describe our gratitude to you all for your love, faith, and prayers. I will keep you all updated! Feel free to ask questions and I will do my best to explain what I can about PSC and organ donation.