PKD: As disease attacks her kidneys, a woman fights back with fitness

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As disease attacks her kidneys, a Williamsburg woman fights back with fitness

By Veronica Chufo, vchufo@dailypress.com | 247-4741

6:40 PM EDT, March 18, 2011

Heather Oman had never heard of polycystic kidney disease until she was diagnosed with it in January 2006.

She's 35. A wife and mother of two children, ages 3 and 8. There is no cure. Average age of morbidity: 58.

"But that is changing. Kidney transplants now are safer and easier, and they're making huge progress. So I'm hoping to live longer than 58."

Oman is working out, eating right and trying to beat the odds. Polycystic kidney disease, or PKD for short, is a disorder in which clusters of cysts develop in the kidneys. It affects about 600,000 Americans and is the fourth-leading cause of kidney failure, according to the National Kidney Foundation.

Oman was experiencing back pain and numbness in her legs and toes. Her doctor suspected it was a spinal cord tumor and ordered an MRI.

"I was fully prepared to handle a diagnosis of cancer," she said.

Instead, she was told it was PKD.

"I had never heard of it. It was a complete shock. I said, 'I don't have that.'"

The pain she was experiencing was the result of enlarged kidneys. As cysts grow in the kidneys, they replace kidney matter, forcing kidneys to grow to compensate for the cysts, Oman said. Her kidneys were so big they were pushing on her spinal nerves.

"They're probably the size of Nerf footballs," Oman said. They should be the size of fists.

She wasn't aware of any family history of PKD, so her sisters and parents got checked. Turns out, her dad has a very mild case. He remains asymptomatic, and it may never cause him problems, Oman said. About half of people with PKD will have kidney failure by age 60, according to the National Kidney Foundation. The disease affects people differently, causing some serious problems while others may never experience symptoms.

It also means her children have a 50 percent chance of having it.

That hasn't stopped her from wanting more children, though. The disease has.

"I would actually love to have more children, but because of my kidney function, I actually can't have more kids," she said. "The reality is it's probably too dangerous to have another child."

Oman had four miscarriages after her first child, which may or may not be due to her kidney disease. Then she got pregnant with her daughter. Before her pregnancy, her kidneys were functioning at 100 percent. After, she lost 40 percent of function. She had a difficult pregnancy that resulted in high blood pressure that never decreased. She is on blood pressure medication and probably will be for the rest of her life, she said.

PKD is an adult-onset disease. She's not sure if she wants to get her kids tested. It depends on whether a treatment comes up that slows cyst growth. She's in a study to see if a combination of blood pressure medications have an impact on cysts. Blood pressure is regulated by the kidneys.

Numbness comes and goes, but the pain is fairly constant. It feels like someone is pushing on the sides of her abdomen and her tailbone. It's too painful to lie on her back. She maintains a low-sodium diet and exercises — it keeps the pain at bay.

"The more fit I am, the less pain I have," she said.

Her diagnosis made her think: What would I like to accomplish before it goes out or I have to go on dialysis or get a kidney transplant?

"It's made me actually push my body in ways I never would've pushed it before," Oman said.

She has finished two half-marathons and a run-swim-run. She's training for a Half Ironman swim, which is 1.2 miles, and a Ragnar Relay, which is made up of a team of 12 runners that cover 200 miles in a 24-hour period.

"If my body was going to give out at some point, then I wanted to make sure I got the most out of it while I still have a chance," Oman said. "In a lot of ways, it's been a blessing, because I'm in the best shape that I have ever been in my life. Exercise is a key part of my life like never before. My husband said, 'PKD looks good on you' — because of my diet and exercise."

The cysts can't be removed surgically. "There's just too many of them to count," she said. "Basically, my kidneys look like a pile of grapes."

Statistically, she will need a kidney transplant sometime in her 40s.

"But no one really knows because everyone progresses differently," she said.

"It used to really bother me, and it used to be like a big black cloud over me. But you can't live like that. You have to live for now and what you've got," she said. "I'm more hopeful with the diagnosis now than I was four years ago."

She joined an e-mail group for people with PKD, but it was too depressing. So she started blogging at http://www.livingwithpkd.blogspot.com/. Some of her posts are about PKD. But mostly, they're about life.

"This is what is comforting to me," she said.

About PKD

Polycystic kidney disease is a disorder in which clusters of cysts develop in the kidneys. Symptoms may include high blood pressure, back or side pain, headache, increase in the size of your abdomen, blood in urine, frequent urination, kidney stones, kidney failure and urinary tract or kidney infections, according to MayoClinic.com.

How can you help?

The Tidewater Chapter of the PKD Foundation plans to hold a fundraising walk Nov. 6 at the Virginia Beach oceanfront. Contact TidewaterChapter@pkdcure.org for more information. Find out more about the Tidewater Chapter at http://www.pkdcure.org/tabid/681/Default.aspx.

Kidney Web chat

Log onto dailypress.com at noon on Wednesday, March 23, to ask your questions about kidney disease during a live Web chat with experts.

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