Published: December 14, 2008 12:29 pm      

PKD is often a 'quiet' disease

“It’s a quiet little disease.”

Not only is Polycystic Kidney Disease (PKD) a little known disease, it also “kind of sneaks up on” those affected by it, according to Pat Lynes, whose husband Carl passed away from the disease in May 2006.

Often people affected by the disease might not know about it for years as signs and symptoms can go unrecognized or be mistaken for something else, Lynes said.

“One of the major symptoms is high blood pressure,” she said. “But a lot of people are treated for high blood pressure as a disease itself, not a symptom.”

While doctors try to find a way to control the high blood pressure, the underlying Polycystic Kidney Disease can go unchecked, Lynes said.

“It slowly works its way and does its damage in the body,” she said, noting that while the disease slowly shuts down the kidneys it also does damage to other organs in the body such as the heart and liver.

From the time Lynes’ husband first went to the doctor in the mid-1970s for help with his recurring and seemingly uncontrollable high blood pressure, it took almost five years and several more doctors before Carl had a diagnosis of Polycystic Kidney Disease.

However, being able to identify the disease didn’t do a lot for him at the time because a lot wasn’t known about the disease at that time, Lynes said.

“In ‘81 or ‘82 they made the actual diagnosis, but there was no other real treatment then,” she said.

In fact, during one of the many doctor visits/hospital stays that followed Carl’s diagnosis in the 1980s, Lynes said that they were “told that in four to six years he would be on dialysis or dead.”

However, Carl was a fighter, she said, and together with the “good care” of an understanding nephrologist (kidney disease specialist) in Enid named Dr. Naquibe, her husband managed to stay off of dialysis until 2003, “way past the four to six years.”

But throughout that time, the disease still progressed, developing more and more cysts, which sometimes grew so large that they had to be aspirated, Lynes said. Other times the cysts would burst, she said, noting this would be painful and would lead to blood in the urine.

“It was constant worry; you never knew when something was going to go wrong and you had to drop everything to go to the doctor’s,” Lynes said.

There were several times she had to take him to the hospital in the middle of the night and “then wake up and go to work the next day, that is if we got back to bed,” she said.

It was exhausting for both Lynes and her husband, both physically and emotionally.

“It take a toll over the years,” she said, noting that “as it goes one, it gets harder.

“It’s hard to watch someone you care about fight it,” Lynes said, noting that it’s especially hard when they’re on that downhill slope.

“My wish is that nobody else goes through that,” she said, which is why even though her husband succumbed to the disease in May 2006, “(she’s) still trying to help find a cure.”

Since her husband was diagnosed over 25 years ago, Lynes said “great progress” has been made in the detection and treatment of Polycystic Kidney Disease.

In fact, Lynes is confident that a way to stop the progression of the disease, and possibly even a cure, is “out there, just beyond our reach . . .; it’s getting closer all the time.”

However, more research is needed, she said.

But research requires funding, which can be problematic because “most people don’t know about the disease,” Lynes said.

“No one makes it known,” she said. “So that’s what we’re doing, trying to make it known.”

Lynes together with other local residents affected by the disease are trying to raise money for research by selling chances to win a guitar autographed by Toby Keith.

The guitar will be raffled off Thursday afternoon, but there is still time to purchase tickets for the raffle.

Tickets can be purchased at The Cowboy Tack Shop or by contacting Elise Solloway at 254-4722. Donations will also be accepted.

All proceeds will go to the PKD Foundation, which champions research about this disease that according to the foundation’s website “affects 600,000 Americans and 12.5 million children and adults, worldwide.”

Lynes said that she shares her husband’s story because she “would like to see this disease stamped out,” and she knows that only by spreading the word will she ever help to gain support for critical research.

“There is power in knowledge. If you have knowledge, you have the power to make a difference,” she said.