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8/31/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
I am scheduled to have a living liver transplant on August 31, 2016 at the University of Minnesota Health in Minneapolis. My cousin, Kris Reichelt, is my donor. As I am sure all will go well, I will be in the hospital 2-3 weeks. Kris will be in one week. All prayers for Kris and me are welcome.
As some of you know, I was diagnosed with Primary Sclerosing Cholangitis when I was 31 years old and have had symptoms of it since I was 25. It just took my doctors a long time to diagnose it. Over the years, I have had varying symptoms including extreme fatigue, intermittent itching and intermittent pain and discomfort.
In May and June, 2016, I was evaluated for a transplant and approved. I was officially added to the UNOS transplant list on July 1, 2016. I have been off work since June 13, 2016.
The reasons they want to move forward are: 1. I have had this disease, primary sclerosing cholangitis, for at least 25 years. I was originally told I would need a transplant in 5-7 years and now the literature states the average time from diagnosis to a transplant is 10 years. Given how long it has been for me and the family history of my sister, Tami Gaeu, getting cancer, cholangiocarcinoma, from this disease, they feel my risk for cancer is increasing. This cancer is very aggressive and has a very low survival rate. Tami passed away only a couple months after diagnosis at the age of 44. 2. My symptoms have been getting worse for over the past year. I am on two medications for itching and am frequently not getting relief. The itching is caused by bile salts backing up within my bloodstream. I have been taking medication for hepatic encephalopathy which is ammonia backing up in my brain and resulting in a difficulty with concentration and thinking clearly. I also used to only have intermittent pain and discomfort in the liver area and now am experiencing it daily. I am more fatigued then ever and have very limited energy. I also frequently feel nauseous and don't feel like eating. I have many other symptoms of the disease as well that don’t show to others.
In February, 2003, my father, who also had this disease, received a living transplant from my mom’s niece, Kris's sister Linda Dorn, and lived another 11.5 years before the disease returned and ultimately took his life.
My personal goal has always been to not need a transplant until after Matthew, my youngest, graduated from high school. I have achieved that goal and am now mentally ready to move forward down this path. I am looking forward to better health and living life to the fullest once again.