When people ask me to tell them about myself, I generally say that I am married to my soul mate, Jerry Waxman, I am the mother of two amazing daughters, Erica and Kim, “Grammy’ to our delightful granddaughter Eva, but I am also one of 12.5 million people who battles Polycystic Kidney Disease (PKD) every day.
Karyn Waxman, PKD Foundation Memphis Chapter Coordinator
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PKD – Polycystic Kidney Disease
PKD took my life by storm fifteen years ago. While vacationing with my husband I developed a raging kidney infection that resulted in a lengthy hospital stay. The doctor who treated me, a family friend, told me that I had ‘funny looking kidneys that were not where they are supposed to be,’ but not to worry because ‘not everyone’s anatomically correct!’ His words resonated with me when the pain I was experiencing refused to ease up. When I complained about still experiencing pain and malaise three weeks after my release from the hospital, he told me that he believed I was fine, but that ‘we could look further.’ I insisted something was wrong and a CT scan was scheduled the following week. The test revealed numerous cysts, too many to count, completely covering and distorting my kidneys, liver, and ovaries……I was diagnosed with ‘text book’ PKD.
Having never heard of PKD before I was frightened and frantically began a thorough Google search to learn I all could about a disease that could potentially challenge my life. I quickly discovered that PKD is one of the world’s most common dominant genetic life threatening diseases known to man. It is an equal opportunity disease and affects men, women, and children of all ages as well as people of all ethnicities. PKD causes cysts, or small sacs of fluid, to develop on, in, and throughout the kidneys forcing them to enlarge and ultimately lose their ability to adequately filter toxins from the blood stream. In fact, polycystic kidneys can grow to be as large as footballs and weigh as much as 30 lbs. each!
Symptoms of PKD include chronic pain in the back, sides, and abdomen, chronic urinary tract infections, distended abdomen, kidney stones, blood in the urine, high blood pressure, and family history of kidney disease. PKD is the 4th leading cause of kidney failure with nearly 60% of its victims requiring dialysis or transplant to survive. PKD patients are also at a high risk for developing cardiovascular disease as well as intracranial aneurysms. Sadly, there is currently no known treatment or cure for PKD. While dialysis and transplant are reasonable treatments for kidney failure, neither options stop the pain and suffering that are associated with this disease.
While digesting all of the ugly facts about PKD, a pivotal moment for me came with the understanding that neither of my parents had PKD and yet I had developed it as a result of spontaneous genetic mutation. Because PKD is a dominant genetic disorder, this meant there was still a 50% chance that I had inadvertently passed it onto one or both of our daughters. Knowing that I might have given our girls a potentially life threatening disease was torturous for me, and extremely difficult for my husband. After all, what if all the women in his life were fundamentally at risk for all the ill effects of PKD? And to think, there was nothing we could do about it….no treatment or cure….. We were both overwhelmed and distraught.
It didn’t take me long to realize that doing nothing about this emotionally and physically challenging situation was totally unacceptable. I had far more questions than I did answers. For example, if 1 out of 500 people are affected by PKD why had I, and educated individual, never heard of it before? Why does the public know nothing about PKD? Why is there no treatment to stop the disease from progressing to kidney failure? Why did my internal medical doctor know so little about PKD? Why is the pain associated with PKD so difficult to treat? Why is the discussion of to treat? Why is kidney disease so taboo?
Determined to become as knowledgeable as possible so that I could actively fight this disease, I quickly found the PKD Foundation and agreed to step out of my quiet little world to become an advocate for the only organization in the world that could offer us hope for an improved quality of life. I started the PKD Foundation Memphis Chapter 14 years ago to enhance PKD awareness, education, and support for patients, families, and healthcare practitioners here in the greater Memphis community and have served as the Volunteer Coordinator ever since. I disseminate information about PKD to the community, hold monthly support meetings, arrange education and seminars, and have raised over $800,000 for PKD research and education programs by hosting 14 annual Driving Home A Cure for PKD Golf Tournaments. I have had the pleasure of serving two terms as a member of the PKD Foundation’s Board of Trustees, as well as a member of the PKD Foundation’s Volunteer Action Committee. I spend a great deal of my time rolling up my sleeves and participating in PKD clinical trials at hospitals in Atlanta and Baltimore, lobbying Washington annually for increased federal funding for PKD research, hosting local and national fund raising events, and networking for the sake of PKD awareness.
When driving around the Memphis area please take note that I’m the one behind the wheel of the car sporting the CUREPKD license tag and my husband the END PKD tag! Yes, PKD may have altered my life, but I spend my days fighting back and work hard to improve the lives of those battling this disease with me.
Our 14th Annual Driving Home A Cure for PKD Golf Tournament is slated for Monday, August 31, 2015 at TPC Southwind. Once again, we are proud to have been accepted into the Liberty Mutual Invitational family of charity events and as such receive $50,000 in gifts and merchandise which enhances the golf experience for our participants. This event features both a morning pairs event and afternoon scramble. Guests have the option of playing 18 or 36 holes of amazing golf while enjoying an all inclusive event featuring on course contests, boxed lunches and a full dinner awards banquet. Registration will be available soon.
Every year I choose a cause to advocate for and help increase awareness. Karyn and I met several years ago and I found her story riveting. I had never heard of PKD. My awareness was nil until I meet her. Even this past year when I started emailing asking her blog for me, my knowledge was so bad I was calling it a liver disease. Now after this I KNOW it’s a Kidney disease. Please everyone take a few minutes and help us raise Awareness by sharing this to your social media channels.
Until next time,
Take time to live a life that inspires you!