For Patients Caregiver Tips and Advice For Medical Professionals

Tom K

Hepatic Encephalopathy/Congenital Hepatic Fibrosis

I was born with Congenital Hepatic Fibrosis that was discovered when I was in grade school. It was originally diagnosed as PKD but later in life while in college when I was hospitalized by a number of bouts of internal bleeding due to esophageal varices they figured out what was really going on.

Years later, at the age of 35 having started a family and building a successful career I began having problems with my encephalopathy. The issue progressed a rapidly forcing me to put my business on hold, robbing me of my ability function as a father and husband. With low MELD scores I was on the transplant list over twelve  years but at this time I began looking for other options when my former sister in law Health stepped up and offered to give me half of her liver. We laughed at first thinking that the odds of a match were far too great as I am O-blood type and she didn’t even know what type of blood she had. Sure enough she was a perfect match, but we weren’t done. After rigorous testing the Physician in charge of my care told me that I had gotten too sick to put Heather’s life at risk and sent me home to “put my affairs in order.” I was not about to give up, and found another hospital that did the transplant seven months later.

Three months and eleven days after my surgery all three surgeons met me at the finish line of the America’s Finest City Half Marathon. One year after surgery Heather and I ran the Rock and Roll Marathon with matching jerseys saying “One Liver Two Runners.”

I understand that my experience is is not like that of others and I believe that I am truly blessed, I do not take this gift for granted and use it to find strength on the worst of days and appreciation for the good guys. The days that live in the middle are approached with a smile and excitement for what is to come next.


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