GODEN’S MISSION

In 2011, we moved from Stamford, CT to Culver City, CA. Once again, we packed up our medical records and brought them dutifully to our new physicians in Los Angeles. We chose one of the major university hospitals as our hub of care. It was the doctors we met here who rejected the ITP diagnosis and pushed us to seek a deeper understanding of the driving factors behind his symptoms.

Two years later, after a definitive liver biopsy, Ernest was diagnosed with a rare liver disease called Nodular Regenerative Hyperplasia with Portal Hypertension (NRH Syndrome).

We found a doctor at The National Institutes of Health who was researching NRH. The only person in the country with a specific understanding of it. Ernest became a patient at the NIH and was enrolled in two research studies there. He underwent more invasive tests and lots of imaging.

In 2016, Ernest began to develop life-altering symptoms. He began to bleed internally. He developed ascites. He had esophageal varices that required banding. He began to lose weight and stamina.

In 2017, Ernest contracted a serious infection called Peritonitis. This was caused by the ascites and some of the other issues resulting from the liver disease. His hepatologist at the time told him that NRH is not something that is transplanted and that they would help to manage the symptoms to improve his quality of life, but that was about all that they could do.

January 1, 2018, Ernest was admitted to the hospital for the fifth time in three months. This time, however, he was encephalopathic, found himself in ICU and was put on the liver and kidney transplant list. His body was shutting down. He lost all muscle mass and weighed 45 pounds less than a year earlier. He was swollen and retaining fluid throughout his body. The internal bleeding continued. A priest was called in to perform the anointing of the sick and to give Ernest his last rights. The family was gathered. The prognosis was grim.

February 2018, after several invasive procedures, a strict drug regimen and many blood transfusions, the doctors were able to stabilize Ernest enough to release him. We got into the car with our three sons and drove to northern California where there was another large university medical center and a surgeon who promised to help save Ernest’s life. He was admitted to that hospital days later with more internal bleeding and in intense pain.

March 5, 2018, Ernest received a life-saving liver transplant.
I spoke at length with his surgeon about his case and the fate of similar people who suffer from horrible diseases of their organs. The doctor shared with me his frustration, at the global level, with the lack of organ donors. He shared with me his pain while watching people, CHILDREN, die every single day in the U.S. because there are not enough donor organs to save their lives. During this conversation, in my mind, this is when the Global Organ Donor Education Network GODEN was born.