GODEN’S MISSIONThe mission of the Global Organ Donor Education Network (GODEN) is to save and enrich lives of people around the world by providing a community of organ donor advocates and advocacy organizations to share best practices and ease fears of potential donors.
THE GODEN ORIGIN STORY
In 2005, Ernest and Nancy (that’s me) Adzentoivich moved from Brooklyn, NY to Stamford, CT. We brought our medical records with us from Manhattan to share with our new MD in our new hometown. We were both healthy 30-somethings without a very interesting medical history.
The new doctor reviewed our records and called a few days later with a question for Ernest. The doctor noticed that Ernest’s platelets were low at his last recorded physical exam and wanted to know whether the doctor had mentioned it or had sent him for any follow-up testing: No. No testing had been ordered.
The new doctor ordered one test, then another, then another, and eventually Ernest saw a Hematologist. Over the course of several years, during which time Nancy gave birth to identical twin boys, and then to a third son, Ernest continued to seek answers to what seemed an elusive anomaly. With his platelets continuing to fall lower and lower, and also the emergence ofan abnormally large spleen, specialists finally diagnosed Ernestwith a condition called ITP with Splenomegaly.
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.
And don’t forget to share how to become an organ donor! Tell everyone that you are an #EverydaySuperhero spread the good word. We can do the most good when our intentions are known. Tweet, post, share, snap, and post right now: