Michelle Portra was born with a rare liver disease (biliary atresia). At 8 weeks old she underwent the Kasai procedure which created an artificial bile duct. Many children born with this disease undergo a liver transplant at a young age. Despite numerous complications and hospitalizations throughout her life, Michelle’s liver hung in there and did its job for 22 years! The cause of Biliary Atresia is unknown and the only cure is a liver transplant. Unfortunately after 18 years, her disease has now progressed to the point that her doctors at the University of Colorado Hospital have told us that her only option is a life-saving liver transplant.
Michelle has been placed on the liver transplant waiting list. Due to the distance to the transplant center, Michelle will have to relocate and live in Denver for about 3 months around the time of her transplant. She will also need to travel to Denver for care both prior to and after her transplant. In addition, Michelle will be on a life-time of expensive anti-rejection medications. We are very appreciative of the many offers of support and prayers during this time, but financial help is also needed as our insurance does not cover any relocation expenses.
September 11, 2015
Michelle has been struggling lately. About 6 weeks ago she started not feeling well and suspected cholangitis. Her Bili had jumped from near normal to 11, then 14 the next day. We headed to Denver for an admission, tests, and IV antibiotics. Her bili peaked at 17 and her MELD at 19. Her bili is now 13 (MELD 17). This makes her very nauseous and lethargic. In the midst of this she also had more banding for esophageal varices, which is very painful for a few days afterwards. The bad news is that a MELD of lower than 20+ is unlikely to result in the offer of a liver. So we wait and see.
February 27, 2014
Michelle is doing really well. Her MELD is 12 (that determines her place on the transplant list). At the time she was referred to listing, it was 18. We are heading through the ice and snow to Denver this next week to see her specialist on the transplant team for a checkup. I don’t expect any surprises. I’m so glad that she is listed though because when she does get sick next, things should move pretty quickly since all of the pieces are in place already. Thank you all for your support – emotionally and financially. Our entire family is so appreciative!