In today’s episode of “Healing From Within” Host Sheryl Glick welcomes special guest Suzanne Ruff author of “ The Reluctant Donor” her inspiring loving story of becoming an organ donor and sharing the story of her remarkable family who lived with courage and faith while seeing 19 family members afflicted with Degenerative Polycystic Kidney disease for which there is no cure. Suzanne is a living kidney donor, a free lance writer for the Charlotte Observer and has been published in The Chicken Soup for the Soul books-Grieving and Recovery and also the Chicken Soup for the Soul Harvard Medical School series: Say Hello to A Better Body. Suzanne is a member of the National Kidney Foundation’s Living Donor Council Executive Committee.
Suzanne Ruff who grew up in a large Irish Catholic family in Chicago comes from a family that has been plagued by kidney disease for generations. In her lifetime Suzanne has lost her mother, several aunts including her mother’s sister, the nun Sister Mike who was diagnosed when Suzanne was only 12. When Suzanne was about 5 years old she remembered her mom being sad when her grandmother died of kidney disease. At that time the family may not have been aware Polycystic Kidney disease (PKD) was hereditary. When Suzanne’s brother Jack was diagnosed with the disease the family began to find out more about it.
According to statistics posted on the PKD Foundation’s website more than 60 percent of people with PKD will develop kidney failure and have to be on dialysis or a transplant to survive. An estimated 600,000 Americans and 12.5 million newborns, children and adults worldwide are currently battling the disease. PKD affects more people than Down syndrome, cystic fibrosis, muscular dystrophy, sickle cell anemia and Huntington’s disease combined. PKD, the most common of all life threatening genetic diseases, is a condition in which fluid filled cysts develop on both kidneys. Over time, the cysts grow and multiply causing the kidneys to increase drastically in size. There is no treatment. There is no cure.
In learning more about PKD we discover that the kidneys are eventually unable to filter the toxins of the body causing renal failure. The disease strikes people between the ages of 25 to 50. A life on dialysis or a transplant are the only choices available for survival. The transplant list now has more than 116,000 people on it. Suzanne describes that when her Mom collapsed and entered the hospital it was necessary for her to be on dialysis for 10 years before getting a kidney transplant. The same fate awaited her two sisters Janice and Jo Ann. Suzanne’s mother and sister, Janice received their kidney transplants from strangers who had died, but by the time Jo Ann got sick living donation practice had become more prevalent.
Sheryl has over time discovered the true meaning of courage which is the backbone of Suzanne and her beautiful and loving family. Having courage does not mean we do not experience fear. Courage is feeling the fear, acknowledging the fear, and asking for help, divine or human to move beyond the fear, do what must be done, and share love beyond any fear or limitation of the mind. Courage is trusting a bigger plan for our personal, spiritual and physical life and growth for accepting life with all its challenges and still being grateful for being alive.
Suzanne wrote in “The Reluctant Donor”: “Each of us walks the path of our own destiny. We will stumble and fall along our way. We will come to the proverbial fork in the road. The path is paved with pebbles left by our ancestors, and, if we are intuitive, signs are everywhere. It isn’t always of our choosing this path of life. But then again neither is our genetic code.
Suzanne shares an interesting story of a friendship between her husband and a young man named Sean and how the three moved to Hawaii for their work situation. This story seems to reflect the statement above that Suzanne wrote. It began when Sean was absolutely terrified to put his name on his new drivers license issued in Hawaii and list himself as an organ donor. He was from South Africa and the thinking there was that if you were an organ donor they might not work as hard to keep you alive. Sheryl admits that this may not be a cultural or national idea as when she was younger here in the United States she had the same uniformed fear. Suzanne reassured Sean that a doctor’s Hippocratic Oath is to do no harm and to save lives.
Actually, a completely separate team of doctors work to save a life before an organ donor medical team is called in after a passing. Suzanne also pointed out that just like you can’t take your car or CD collection with you when you leave life, you can’t take your kidney’s heart, or lungs to Heaven. So being a donor can give another person a second chance at life. So Sean amended his driving license to become a donor. It was only a short time later that Sean who was only in his early thirties was called home as his mother suffered kidney failure and was put on dialysis. Coincidence???? We think not just as Sean was brought into Suzanne’s life to support her in her decision to become a kidney donor for her sister. Sean became a kidney donor giving his mom his kidney before Suzanne gave hers to her sister. Sean in his love for his Mother showed the courage necessary born out of moving past ignorance and fear.
In regard to this synchronistic story Suzanne wrote, “ I often wonder if the angels orchestrate why we come into each other’s lives. I know that indeed we do come with a life plan or itinerary and people places and experiences that are not random, but necessary for our soul development. People leave and new people appear, and we continue to share our journey hopefully learning to accept all change more easily, and knowing that we are never alone, always connected, and will in time be beyond this physical plane to share our experiences, and continue to evolve as the divine energy spirits we are.
Getting back to the story of Suzanne’s friend Sean…. Sean went beyond just being an organ donor on his driver’s license and gave his Mother a kidney on March 14th That is the day Sheryl’s Dad passed over and recently Sheryl learned that 314 is the day of Pi or in mathematical terms the Whole and Everything COINCIDENCE?. Sheryl as author of ‘Life Is No Coincidence” says No… it is a part of our destiny and need to be with certain people. Yes..By the way Sheryl’s Mom also lost a kidney from Cancer.
In talking about how close Suzanne and her sister Jo Ann were when they were children she says they didn’t seem to like each other as much as adults. In thinking about what changed, who changed, or if life in general changed, Suzanne realized a radio show she often listened to “The Happy Hour” gave her a clearer view of herself and her family helping her to make the decision to go through with giving a kidney to her sister. Suzanne was reminded that no one can explain the dynamics in a family and no one grows up in a perfect family as there is no such thing. There is no such thing as a perfect human being either. We are all learning to work past perceived hurts, slights and inconsequential misunderstanding to form a clearer view of why certain events happen and learning to perceive events in a more enlightened fashion. It seems when we begin to focus on the best aspects of ourselves and others, life becomes more meaningful and we can be happy which is the natural state for all of us.
Suzanne will also share her advice for living donors and what she would like the living donor’s doctors to know, and also how important she believes follow-up studies of the donors and recipients for providing helpful ways to improve the process.
Dr. Sanjay Gupta the CNN Chief Medical Correspondent and author of “Chasing Life and Cheating Death: wrote in his endorsement of your book: “More than ever we are looking for hope. We look for hope in our families, at the workplace and in the eyes of all the people around us. As soon as I started reading “The Reluctant Donor” I knew I had found a special book that would restore faith in my belief about the goodness of everyday people. This book is a 60 year-long epic journey of triumphs and tragedies of a beautiful and inspiring family. Even more than that it is the story of unbridled love one sister had for another and how that love was tested.
As Sheryl read Suzanne’s story there were many synchronistic reminders of her own mother and father, 3 sisters, grandparents, loving aunts and uncles. Observing the strength of Suzanne’s parents to allow their children the time to discover their own faith and love of life no matter what the challenges were for the family were reminiscent of my family life. Individual members were honored and encouraged to develop their own spiritual and natural gifts and to find pride in their own accomplishments and the triumphs of the family acting in unity and love. It is not only believing the words of our religious or spiritual training, but having the courage to hold onto faith and live each day in the moment, regardless of insurmountable odds or an unrelenting genetic disease that is the message all loving parents should share with their children. This book is highly recommended by Sheryl who feels that people will be raised up to a higher level of empathy compassion and gratitude for life and love. It is written in a moving sincere and truthful way to share the triumphs and challenges all families face, even if it is not specifically a genetic disease that tests them. We are all challenged so we may make choices that hopefully release the wisdom and heroic measures of our eternal soul. That is the purpose and gift of life.