This explains PH1: https://www.alnylam.com/patients/primary-hyperoxaluria/
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.
In March of 2018 Andrew's health took a serious turn and he faced critical renal failure and immediate dialysis was required. Since March, Andrew has faced many hospitalizations, dcctor appointments, tests and treatments. He officially received a diagnosis of having Primary Hyperoxaluria Type 1 after going through genetic testing. This is a inherited genetic disease in which his liver is missing a vital enzyme that breaks down oxalates. When the body cannot break oxalates down they build up causing damage to body organs. The first organs that face damage are the kidneys. Over the years, Andrew had kidney stones, some so bad that he required hospitalization and surgery to remove the kidney stones that were too large to pass. Little did we know this was due to this genetic condition so years passed by while his kidneys took a beating and ultimately reduced to 15% function in March 2018 and are currently operating at 6%.
Andrew has a great Physician who identified Andrew's condition before test results were even finalized and supported Andrew being placed on the transplant list. Officially in October 2018 after 3 day transplant evaluation at Nebraska Med Center , Andrew was made active on the liver & kidney transplant waiting list. A transplant gives him hope of a life without dialysis (which he currently undergoes 3 days a week for 4 hours at a time) but it also means lifelong pills to allow the transplanted organs to survive.
While this has been the biggest challenge Andrew has faced we know we have hope and we are very blessed to have support from family & friends.
Andrew and Nicole will use this website to provide updates on how Andrew is doing. Please stop by often, thank you all!