Walk planned For Sept. 18 to raise funds and hope

Laura Moyer (right), author of this story, and her sister Debbie Paholski, both have Polycystic Kidney Disease.

EDITOR’S NOTE: The 2-mile Michigan City Walk for PKD will take place Saturday, Sept. 18, 2010, at Creek Ridge County Park. Check-in is at 9 a.m. and the walk begins at 10 a.m. Walk, form a team, help with the committee, volunteer and more! Register online at www.pkdcure.org/michigancitywalk. For more information, please contact Walk Coordinator Laura Moyer at (219) 778-4376 or e-mail michigancityindianawalk@pkdcure.org.

By Laura Moyer

   In 1940, decades before genetic testing could provide answers to the origins of the baffling Polycystic Kidney Disease (PKD), Lois New lost her father to the disease. She was only 10 years old.

   Sixty-four years later, Lois’s life was claimed by PKD.

The sisters' mother, Lois New, who died of PKD.

   Lois New was my mother. In September, her family, including my sister Debbie Paholski and myself, will walk in our mother’s memory and with hope that in the near future a cure will be found where none exists today.

   Both Debbie and I now have PKD as well, along with 13 other members of our immediate family.

   PKD is one of the most common genetic diseases in the United States. It affects one in 500 Americans. Some 600,000 Americans and 12.5 million people worldwide are afflicted with this disease.

   On Sept. 18 we will walk as part of the Chadwick Family Team (Chadwick was our mother’s maiden name) at Creek Ridge County Park. I’m the coordinator for the walk. The event is being sponsored by the PKD Foundation and proceeds will go toward research to find a cure for this terrible disease.

   The main function of the kidneys is to filter toxins out of the blood. PKD is a debilitating, chronic, genetic affliction that reduces kidney function due to the growth of a large number of cysts on the kidneys. Eventually the kidneys fail, and the only treatment options are dialysis several times a week, or a kidney transplant.

   It is estimated that more than 60 percent of those with PKD will develop kidney failure and need to be treated with dialysis or a transplant.

   I remember my mom, a longtime Michigan City resident, as loving, caring, and one who always put her family first. She came from that generation that just didn’t go to the doctor very much. She was all about her family.

   My sister Debbie, who is a third grade teacher at Pines Elementary School, agrees. She remembers Mom as a real trouper, never complaining and just doing what she had to do.

   In 1997 Mom developed an unusual skin rash. It was bad enough that she finally went to the doctor. After extensive testing and a look at the family¹s history, the shocking diagnosis was disclosed. Mom was in advanced renal failure. She would have go on dialysis several times per week and placed on a waiting list for a transplant. She declined the suggestion of a kidney transplant, even though the doctor said she was a good candidate for the procedure.

   Mom did start on a grueling dialysis regimen, where the blood is sent through a machine to clean out toxins and wastes, then returned to the body. It is a process that can last up to three hours and may leave the patient exhausted. Dialysis is used only when the kidneys are in complete failure.

   After Mom was diagnosed, we were encouraged to be tested as well. Debbie and I were found to have the genetic disorder. Our other siblings, a third sister and a brother, were not.

   That¹s pretty typical, we’ve since learned. It’s estimated that 50 percent of a family that carries the gene has PKD, and the other 50 percent do not.

   Debbie says she was prepared for the diagnosis. I thought I was ready, but when the physician told me the news, I was still stunned. I really thought I was prepared on that December day a dozen years ago. But I wasn’t. It was gut-wrenching. It hit me hard and I didn’t anticipate that.

   Since that time, Debbie and I have done our best to live as healthily and as normally as possible. We’re both in careers that we absolutely love, and we both have husbands who’ve helped us get through the tough times.

   Debbie is older than me by 15 years, a fact that I enjoy reminding her about! Our journey together with PKD has brought us even closer in a bond that is both deep and life-affirming.

   Today this dedicated teacher is operating at 7 percent kidney function, and while she has yet to start dialysis, she believes it can¹t be too far off in the future. She admits she is beginning to feel the effects of the disease. “I find that I’m getting tired more easily. Because of the anemia, I was getting Vitamin B shots every two weeks to build myself back up again,” she said. She does dialysis daily from her home.

   About a year and a half ago Debbie was placed on a kidney transplant list, and had to endure intense physical testing before she got the OK from the doctors and social workers that she could handle the procedure. The beeper she wears is a daily reminder that she is on the transplant list. When she finally does hear the sound from that small device, she knows she will immediately have to make the trip to the Indianapolis hospital where the surgery will be performed.

   Debbie says she considers herself my guinea pig. “Because I’m older, I’ll go through all of these procedures before her and can tell her what to expect,” she said with a smile.

   My kidneys are still functioning at a high enough level that the prospect of dialysis or a transplant is still far in the future.

   Debbie and I take it one day at a time. “I have my good days and my bad days,” Debbie says. As for me, I know I just have to deal with it.

   And on Sept. 18, our mother will be in our thoughts.

   “My mother taught us how to handle just about anything,” Debbie said. “She never complained about any of the treatments or the dialysis. She just did what she had to do. She was a good mom.”

   For more information about the Walk for PKD and how to register a team, or sponsor or donate to a team, donate items for the silent auction, or be a corporate sponsor, please contact me at 219-778-4376 or visit MichiganCityIndianaWalk@pkdcure.org.

LAURA MOYER is recreation and education planner at LaPorte County Parks.