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Awareness

When PKD intersects with fiction – Listening for Drums

At the PKD Foundation, we’re always looking for new ways to raise awareness and educate people about the disease. One of these many avenues is through literature. Our very own Robin Strachan, Senior Director of Leadership Gifts and published author, discusses her book, Listening for Drums, and how PKD running in her family inspired her to include a supporting character affected by the disease:

When I was a little girl, my father had surgery to remove a large cyst on his kidney, believed to be cancer. It was not cancer, and as the years went by, more and more cysts appeared on his kidneys. He also developed multiple cysts on his liver. At the time, I didn’t know his condition had a name. In 2005, I began working for the PKD Foundation as regional development officer in the Northeast. I met more people with the same condition as my father, and I realized that we, too, had PKD in our family. As an author, I had often thought about featuring a character with PKD in one of my books. But it wasn’t until I began writing Listening for Drums in 2014 that I realized This is it. This is the book.

On August 15, 2017, Listening for Drums was released by Seattle-based Coffeetown Publications/Camel Press. The book features a strong supporting character with PKD.

Listening for Drums is about a young physician, Dr. Carrie Nelson, who dreams of serving as a doctor on the Blackfeet Indian reservation, much to her father’s and fiance’s dismay. The story is told entirely from Carrie’s perspective as an outsider living among the Indians, watching, learning from them—loving them. What she sees and experiences is a window into the culture, history and lives of the people.

On the reservation, one of her patients is a young Blackfeet woman, Violet Hightower, who arrives at the clinic with high blood pressure and pain in her mid and lower back. There is a strong family history of high blood pressure, and she has lost her father and uncle to cardiovascular disease. Now her young son has high blood pressure. Dr. Carrie realizes from Violet’s health history and the symptoms she exhibits that there is a strong possibility that Violet could have PKD, as could her son. An ultrasound shows many cysts on Violet’s kidneys. Dr. Carrie knows it will be up to her to keep Violet as healthy as possible.

But how? On a remote Indian reservation, there is no nephrologist specializing in kidney disease. There will never be a transplant option for Violet. Nor will she have access to clinical trials. In short, without approved treatments for PKD, Violet is looking at a future of kidney failure and dialysis.

It was this reality that fueled my desire to write Violet Hightower’s story. I wanted to illustrate the very real dilemma currently faced by PKD patients. There currently is no cure and no drug treatments for PKD. We are thrilled at the prospect that next year, the FDA could approve the first treatment ever for PKD. Yet we also know that more than one treatment will be needed to meet the needs of every PKD patient.

Dr. Carrie helps Violet manage her disease by treating her high blood pressure and counseling her about a low-sodium diet, regular exercise, and meditation to reduce stress. I believe readers will recognize that many facets of Violet’s PKD story may mirror their own experience with the disease.

I feel very fortunate that the book is doing well in reviews. Reader’s Favorite gave it five stars. At a recent book group meeting in Pittsburgh, where I was asked to call in, participants asked excellent questions about PKD. Violet Hightower will appear in the sequel, Daughter of the Heart, due out in 2018. It is my hope that Violet’s story will help to educate more readers about PKD.

Listening for Drums is available for purchase on Amazon and at Barnes & Noble. A percentage of sales will be donated to the PKD Foundation.

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