By Rachel M. Anderson, Freelance Writer
There are a lot of causes worth fighting for, but none as important to Suzanne Ruff of Mooresville, N.C.,than finding a cure for PKD. "I have lost eight close family members, including my mother, to Polycystic Kidney Disease," she says.
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 dramatically in size.
According to statistics posted on the PKD Foundation's website (www.pkdcure.org), more than 60 percent of people with PKD will develop kidney failure and be forced to depend 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. There is no treatment. There is no cure.
Ruff says her earliest memory of PKD is from when she was about 5-years-old. "I remember my mother being sad when she told me that my grandmother had died of kidney disease and I was named after her," she says.
There wasn't much talk about the disease again until she was about 12 and her mother's beloved sister, the nun Sister Mike, was diagnosed. Then when she was 19, her mother's brother, Jack, fell ill. "It was at that point that we learned the disease was hereditary, and I remember being terrified," she says. "I was engaged and didn't know if my husband would marry me, didn't know if I should have children, didn't know if I was going to have a short life."
Shortly after learning the disease was hereditary, Ruff, her mother and two sisters were all tested. She says her parents lied when they got the test results back and told their daughters no one in their immediate family had the disease, when in fact, their mother and her two sisters did.
"The lie," as Ruff refers to it became apparent a few years later when her mother collapsed and entered the hospital. She spent the next 10-years on dialysis before getting a kidney transplant. The same fate awaited her two sisters - first Janice and then JoAnn.
Ruff's mother and sister, Janice, had received their kidney transplants from strangers who had died, but by the time Jo Ann got sick, living donation had become more prevalent. "After JoAnn collapsed with PKD my daughter, Colette, who was 25-years-old at the time, quietly said to me that maybe she could give JoAnn a kidney. I thought, no! I should be the one to step up before my daughter. She has her whole life ahead of her."
Also weighing heavily on her decision, the knowledge that in 2003 there was a five to six year wait for JoAnn if she put her name on the waiting list. "Our mother was on dialysis for ten years and I couldn't bear JoAnn going through that if I was a match, despite my fears," says Ruff. But shortly after making the offer, she started having reservations. "I was scared to death of being operated on," she remembers.
Journaling was one of the key ways Ruff was able to work through the terror she felt about being a living donor. Soon, page after page of thoughts and memories filled her notebook. Ruff originally thought her journal would be something she'd only share with her immediate family. However, after showing it to her daughter, Rachel, who was working as a producer for CNN's Dr. Sanjay Gupta, at the time, that changed.
"She told me the story was really good and I should publish it. My husband told me the same thing and around that same time, my father came across a collection of letters I had written to my mom when she was alive," says Ruff. In one of the letters, she had said to her mom, "I wish I had the courage you do."
"It had been 20 years almost to the day of our scheduled transplant that I wrote 'I wish I had the courage you do.' I considered it a God Wink," says Ruff, who explains a God Wink as a wonder, a coincidence, a miracle.
"I felt like I was being called to give the kidney," she says. "But when I got that sign from above from my mother, it was like, Wow! This is really going to be an amazing legacy of my mother and her amazing siblings. I have to get this book published."
The Reluctant Donor, (Beaver's Pond Press, April 2010, $14.95) was published just in time for Donate Life Month. Established in 2003, it's a celebration of the tremendous generosity of those who have saved lives by becoming organ, tissue, marrow and blood donors. It's also a time to encourage more Americans to follow their fine example.
"One of the best things about Suzanne's book is it lets people suffering from PKD know they are not alone. There are options for dealing with it. They can be proactive researching and looking into what's out there.
"I think The Reluctant Donor will do wonders for people just diagnosed, letting them know there is an entire community dealing with it and they are not alone," says Dave Kappas, central regional chapter manager for the PKD Foundation. His organization's mission is to promote programs of research, advocacy, education, support and awareness in order to discover treatments and a hopefully a cure for Polycystic Kidney Disease.
"I hope Suzanne's book will help people think about becoming a living donor by showing them that their lives will be the same as they were before, only enriched by the experience. I also hope it will bring awareness to this disease that my family has lived with for so long," says Ruff's sister, JoAnnVillanueva, who now lives in Charlotte, N.C.
Copies of The Reluctant Donor are available for purchase at Barnes and Noble Bookstores, Amazon.com, the publisher's website: www.beaverspondbooks.com and via the author's website: www.TheReluctantDonor.com. A portion of the proceeds will fund kidney disease research.