Battling Polycystic Kidney Disease
- by Jon Devin
Karyn Waxman
Karyn Waxman of East Memphis had one of those moments that everyone fears, sitting in a doctor’s office, test results in his hands, and he says to her, “I think you should call your husband.”
Polycystic Kidney Disease (PKD) had erupted painfully across six organs in her lower abdomen causing massive swelling. Though it’s been almost a decade since the day when she was diagnosed with this relatively unknown, life-threatening disease, there is still no cure or treatment. Still Waxman says her glass has always been half-full.
Life for Waxman, originally from New York, is a race to secure the future for those with PKD. Through volunteering as a fundraiser, she hopes to fuel research for a cure.
“I was on a cruise of all things when I first got sick from it,” the 52 year-old mother of two explained. She went to the ship’s doctor complaining of severe abdominal pain, nausea, and fever, but there was little that could be done on the ship. Back at home she went to see her own doctor, who believed she had an acute bladder infection and put her to bed with prescriptions.
“By five o’clock that night I thought I was dying,” she says.
She returned to the ER, which admitted her immediately. She endured five days of testing and this time was treated for a kidney infection, but somehow Waxman never felt like she’d gotten to the bottom of her condition. She thought she had an ulcer or possibly cancer. A CAT scan finally revealed the real problem.
“Mine didn’t look anything like the normal CAT scans (my doctor) had shown me,” she says. “Mine had little dark shadows everywhere.”
Waxman’s kidneys had swelled to more than double the normal size. Both kidneys, her pancreas, liver, and ovaries were covered with fluid-filled sacs, some of which had burst during her cruise releasing fluids into her body and causing the pain.
Since then she has learned a lot about PKD, namely that it is a dominant genetic disease that can go unnoticed for years and strike suddenly as it did in her case. About 600,000 Americans live with PKD, perhaps 1,000 of those in the Mid-South. The danger of PKD is that the cysts grow uncontrollably and eventually disable the kidneys leading to renal failure.
“I’m really very fortunate,” she says. “Most of the symptoms of PKD will include high blood pressure, blood in the urine, chronic pain in the stomach, back, and sides, and I don’t have any of that.”
The unusual asymptomatic nature of Waxman’s PKD has allowed her to act progressively.
Waxman now serves as the volunteer executive director of the Memphis Chapter of the PKD Foundation, which is seated in Kansas City, Missouri. As such she creates and manages benefit fundraisers like the Walk for PKD held in September at Shelby Farms. She also coordinated an annual golf tournament (Waxman’s favorite sport) and silent auction titled Above Par in May, which raised $17,000.
The PKD foundation is relatively small with only 50 employees nationwide. The bulk of the effort, says Waxman, is done by volunteers like herself.
“The biggest hurdle I had to overcome was the emotional one,” she says. “Because I am fit, for me it was all about what if I’ve given my children a life-threatening disease. How will I live with myself? I base a lot of what I do on the emotional feeling I have as a mother because I want to do something for my girls.”
She explained that awareness of the disease leads to both education and research funding. Since there are currently no drugs treatments for PKD, pharmaceutical companies have been slow to spend money on research. Government money devoted to research has been minimal so far.
In the last few years, though, the tide seems to be changing. Currently, Waxman says that there are about 17 on-going clinical drug trials for potential drug treatments. Waxman has been able to participate in some of them because her condition is relatively stable. Until a treatment is proven successful, though, the outlook is grim.
“About 60% of PKD patients are on dialysis,” she says.
Dialysis presents a major lifestyle change since it requires 2-3 trips to a dialysis clinic each week with each session lasting several hours. Kidney transplants are successful in that PKD will not spread to a new, donated kidney, but there are several other complications.
For one, Waxman said that patients cannot apply for a kidney transplant (Waxman’s husband Jerry immediately volunteered to donate after the diagnosis) unless they are already in renal failure. Then depending on the age of the donated organ and the age of the recipient, the donated kidney may not last the entire lifetime of the patient.
Finding long-term healthcare coverage has also been extremely difficult, Waxman says, because insurance companies are uneducated about the disease.
“They say that in order to qualify for long-term care I must have at least 85% normal kidney function,” says Waxman. “I have 78% kidney function but probably most normal people don’t have 85% either—it’s just that they’ve never had their kidney function checked before.”
The repeated insurance battles have discouraged her from having her daughters’ genes tested for PKD. There is a 50% chance that they too have PKD. Until there is a solid treatment, she says, there is no advantage to knowing, but they could very well lose their health insurance with a genetic test.
“The last thing I want is for my kids to not be able to obtain insurance or have to pay through the nose for insurance,” she says with fire in her eyes. “We’re hoping this kind of information will never be asked for on an application. It’s none of their business.”
While hoping and working hard for the best outcome, Waxman has also tried to prepare for the worst. She began visiting dialysis centers to see what life will be like if she should lose her kidneys. That, she says spurs her continued work.
“It gives me the resolve to work a little harder,” she says. “I’m determined not to let that become my life.”