I am so glad you’re here and that you’re reading this post.
It’s been 10 months. 10 months since the idea popped into my head to create something that could help my friend, Chief of Clinical Transplantation at Stanford Medical Center, and the Lucille Packard Children’s Hospital, Dr. Waldo Concepcion, in his life’s work to save men, women and children through successful organ transplants.
He saved my husband in March 2018.
Nobody else would take his case. It was too complicated. The liver disease was too rare and success rates were unknown in the US, although there were many success stories in Europe. He was too sick. The UNOS standards didn’t qualify him for a high position on the transplant list. His condition didn’t impact the blood chemistry the way other liver diseases do and so he didn’t get a high MELD score – even while he was in ICU. This meant that he faced a very long wait before a donor liver might become available to him. And everyone knew that he didn’t have much time left, so waiting wasn’t an option. However, nobody wanted a failure on their record.
But Dr. Concepcion was different. He was up to the challenge. He was unafraid and confident. He had seen people in this situation thrive. He offered to help. So, my family packed up and moved to Northern California and my husband became a patient at Stanford. Soon thereafter, a donor liver was identified. My husband was the backup patient, second in line to receive the liver if the first patient and surgical team rejected it.
They did. We took it. We knew that it might carry some risk. But some risk was better than sure and sudden death.
My husband awoke from the surgery attached to tubes and machines. A few days later, he was making jokes, smiling and eating like a horse. He had energy and life like I hadn’t seen in years. I was overcome with joy and amazement at both his resolve to live and the miracles of modern medicine.
I asked Dr. C what I could do to help him. Saying ‘thank you’ wasn’t enough. How could I use my skill and energy to ensure other families didn’t endure the suffering that we did? How could I help to keep other dads with their children? My three young sons and I were so very grateful.
And he said, “we need more donors.”
That was all.
We have the knowledge and the technology to save hundreds of thousands of lives each and every year with organ transplants. But we don’t have enough organs.
We don’t need money for research, or a new drug, or to find a cure. All we need are the raw materials. We need the organs that are no longer needed. We need donors.
And, he continued to explain to me how this is a global problem. Some countries, like Spain, have little to no wait list and many very successful transplants. While other countries like Peru and Vietnam have almost no donors and people die from diseased organs that could be transplanted if only there were donors. How could we learn from the countries who seem to have figured it out and share those best practices, tactics, conversations…?
And so, I took my many years of marketing and advertising agency management experience, hired a legal team, and built out a new non-profit that would address this situation head-on. 9 months later, GODEN was an officially designated 501c3 organization.
Unfortunately, during those 9 months my husband lost his battle and left this life. He was too sick for too long. His disease was so rare that he had to accept a donor organ that was less than perfect in order to have any chance of survival. Complications with the new liver led to new problems with his health. Ultimately, his heart gave out before they could find another healthy liver.
Yet I remain so very grateful.
During the 5-months between his transplant and his death, our family lived each and every moment to its fullest. We celebrated my husband’s 49th birthday, my in-law’s 50th wedding anniversary, our youngest son’s 10th birthday, Father’s Day at Dodger’s Stadium, we saw Steely Dan, Damian Marley and The Doobie Brothers. The boys and I ran in The Color Run 5k while he cheered us on from the sidelines. We took our dogs on a few beautiful hikes and went for bike rides. We went to the movies together. We laughed and we cried. We said everything we had ever wanted to say – except good-bye.
And now, I stand in awe of all that I’ve learned through this experience. I celebrated my 20th wedding anniversary with my three beautiful children at my side. My community has surrounded me with love and support. I’ve found a new passion and have identified a path to make a positive impact on the world. It’s GODEN. This is our chance to come together to save lives. Today. Every day. With your support and participation, we will change the world. We will keep families together, longer. We will eliminate the suffering of people with chronic organ disease. We will be #EverydaySuperheroes.
Let’s do this thing.