|Mother and son raise awareness about PKD|
|Thursday, 09 September 2010|
by Elizabeth Nelson
This week (starting Sept. 13) is National PKD Awareness Week. However, most people don’t even know what the dedication even stands for.
Worldwide there are more than 12 million people living with the potentially deadly kidney disease known as polycystic kidney disease, or PKD, but many — even those affected — have never heard of it.
This lack of awareness is part of the reason why Jody Kreuser and her son, Chad Kreuser, have decided to fund raise for PKD by running the Bank of America Chicago Marathon in October.
Both live in Elk River. Jody, 50, is a secretary at Twin Lakes Elementary School, and Chad, 30, is a physical education teacher at Rogers Middle School.
Not only are the mom-and-son team avid runners who both work for the area school district, they have also both been diagnosed with PKD.
For Jody it was about 15 years ago when PKD was first introduced to her life. At the time her mother, Val Schmit, was at the Mayo Clinic for a heart procedure when doctors discoverd she was having kidney failure caused by PKD. “Even after 15 years there is still not a great awareness of the disease,” Jody said, adding that since the transplant her mom is 69 years old and doing great. “Without that transplant she wouldn’t be here with us.”
As the most common form of PKD is genetic, doctors looked to Schmit’s four children to see if anyone matched as kidney donor.
Out of her four children only one did not have PKD and could donate. Jody was not the sister who donated. Instead, she learned she too had the genetic disease.
Since there’s a 50 percent chance a parent will pass PKD on to his or her children, it came as no surprise that Jody’s son also has the disease.
So far her two daughters have also received ultrasounds that have come back inconclusive. Blood tests can also be done, Jody said, but they are very expensive and not recommended for them at this time.
They are 25 and 28 years old, Jody said, and most people are diagnosed before the age of 35 if they know what they are looking for. After age 35 — if no cysts or signs of cysts have shown up — a person will also be cleared of having PKD.
For Chad, he was diagnosed seven years ago after ending up in the hospital with severe back pain — just one of the signs of PKD.Not knowing about the disease itself is half of the problem.
Sometimes people will just go into kidney failure and no one will ever know why, Jody said. If they end up dying, and were never diagnosed, their children — or even grandchildren — will not even know they have a chance of having the disease.
“Some people die of kidney disease and never knew they had PKD,” Jody said.
Complications from PKD
One of the common misconceptions many might get about PKD is that it just involves the kidneys, but that’s not true.
According to the PKD Foundation, other organs such as the liver, spleen, pancreas and intestines also can be affected.
When looking at potential complications from the disease, they run the gamut from developing liver and pancreas cysts, cardiovascular complications including cerebral aneurysms and high blood pressure, and a condition known as mitral valve prolapse, where blood leaks back to the top of the heart.
People with PKD are also at a higher risk of developing intracranial aneurysms, on top of having gastrointestinal complications.
For Jody, since first being diagnosed 15 years ago, her kidney function has decreased. “I know that my kidney function is declining,” said, “and I’m hoping for the best.” In terms of when she’ll need a transplant, that’s still unknown. “It could be five years from now or it could be 10 years from now. Who knows?” Jody said.
Aside from bringing awareness to PKD, as a person who may need a transplant one day Jody also wants people to know more about donor swapping.
Donor swapping is for people who want to donate, but aren’t a right match.
For example, a person can donate an organ to a pool and when a match is found, it can be used.
“It’s becoming a really popular thing,” Jody said.
Living one day at a time
For Jody and Chad, staying active and taking good care of themselves is key to battling PKD. Lucky for Jody, exercising has always been an important part of her life, and Chad has run in many, many races. As a team the two have run two half-marathons in the past, and look forward to the Oct. 10 Bank of America Chicago Marathon. “It’s something we can do together,” Jody said. “That’s pretty special for us.”
For Jody this will be her first marathon and her No. 1 goal is to complete the race. A secondary goal would be to finish it in under five and a half hours, she said.
The Kreusers will be donating all the money they raise to PKD. At first they wanted to raise at least $3,000, but having since already hit their mark they plan to continue to raise more and more funds between now and the marathon.
Aside from the marathon money, the Caribou Coffee on Carson Street in Elk River is getting involved in raising money and spreading awareness.
For two days during the week of Sept. 13, which is PKD Awareness Week, baristas will donate their tips to the cause.
To donate to the Kreusers’ cause visit www.pkdcure.org and click on “donate.” Then on the top right-hand corner click on “Donate to a Walker” and type in Chad Kreuser.