Ride to Pikes Peak

An opportunity for a mother and son to do something special for Polycystic Kidney Disease, for organ donation and for us.

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In 1806, Zebulon Pike traveled west and sighted Pikes Peak. We biked 990 miles along his route and then ran the Pikes Peak Marathon. We are so grateful for the opportunity to raise PKD awareness. PKD caused the failure of Pat’s kidneys. A transplant saved her life eight years ago. Pat’s brothers, sisters and mother were afflicted with PKD, seven in all. Pat describes how PKD affected her life and televised news features are in the "News Coverage" link on the left margin.

Friday, March 31, 2006

A Gift - An Obligation - A Privilege

This morning while spinning I had this thought:

The "idea" of riding to Pikes Peak was A GIFT. For two or three months I was reluctant to accept it. Mom was more decisive. Accepting the gift became AN OBLIGATION to follow the idea wherever it might lead. And at the same time we recognize THE PRIVILEGE. We have been able to adjust and plan our lives to "go for it". We're fortunate to have help and support.

More at Finding Your Path and With Gratitude

Tuesday, March 28, 2006

Volunteering to do the chores

You can take the farmgirl out of Iowa but you can't take the farm out the girl.

Pat is picking up some new volunteer work at Conner Prairie. The "living history museum" in Indianapolis has been the volunteer passion of a lifelong friend of Pat's for years. Pat has volunteered for occasional events in the past but now it looks like it's back to farm chores. Pat will be working with the livestock of the recreated frontier community a couple mornings a week before the museum opens.

Monday, March 20, 2006

I've never heard of PKD before? Is it a new disease?

In the 1700s and 1800s, PKD was often given the label of Bright's disease. This term encompassed any of several kidney diseases marked by high concentrations of protein in the urine. Today, we know that many of the cases of Bright's disease were actually cases of PKD. The first documented case of PKD dates back to Stefan Bathory, the King of Poland, who lived from 1533 to 1588.

In addition, the PKD Foundation is the only organization in the world that focuses on PKD and it was not formed until the mid-1980s. It wasn't until fairly recently that PKD has gained some momentum in raising awareness and funds for the disease.

Another reason many have not heard of PKD is because it is an “internal disorder” — meaning that it does not have a dramatic affect on a person's outward appearance.
A person living with PKD may have pain or trauma on their internal organs, yet they maintain a very “normal” physical appearance that does not attract attention or compassion from the unknowing public.

Above is from the PKD Foundation website.

This might provide clues why America hasn't heard of PKD but it's no justification for complacency. America (and the world) would benefit tremendously from breakthrough research which could stop cysts from forming and which could keep people off dialysis and keep PKD from progressing to renal failure. It would really make a difference for individuals and for society.

Friday, March 17, 2006

Getting up

I wanted to title this post "getting my ass up" but I decided against it. Today I had an incredible run. I'm in San Francisco posting this in a corner coffee shop. I was invited by the St. Louis Blues for a trip to see the team play against San Jose. Today and Wednesday I was able to run the best route a long distance guy could ask for. Downtown along the bay to the Golden Gate across the bridge into Marin Hills. Wednesday I went up to Hawk Hill. Today I went down to Kirby's Cove. The many spectacular views and sights are incredible and touring the town one stride at time is the best. I detoured through the Presidio this morning. Really special. Anyway I got up before dawn to get the run in. That's how I get my runs and rides in. Just got to get my ass out of bed. Now stepping off the soapbox.

Monday, March 13, 2006

Retirement = more things to do

Pat is going to the 2006 U.S. Transplant Games June 16 - 20. The event is in Kentucky. Pat will participate in cycling, volleyball and table tennis and meet other transplant recipients.

The U.S. Transplant Games is a four-day athletic competition among recipients of organ transplants. Competition in the U.S. Transplant Games is open to anyone who has received a lifesaving solid organ transplant--heart, liver, kidney, lung, and pancreas. Bone marrow recipients are also eligible to participate. As much as the Games is an athletic event that calls attention to the success of organ and tissue transplantation, it is also a celebration of life among recipients, their families and friends.

Wednesday, March 08, 2006

With Gratitude

I wrote another post about Finding Your Path. If God has set a path for us then He plans for others to help us on the way.

Thank you ...

Michelle for the freedom to follow this where it leads
Our friends for encouragement
Mike for bike advice
Patrick for web advice and support
John, my favorite and creative TV producer/editor
Spencer and FSN for understanding
My running and cycling buds for their friendship
Kara at PKD for your enthusiasm
Jeff and Team 180 for the 2005 race and everything
Mark and Becky for storing the RV trailer
Mark your generosity (you're the first and that's cool)
SmithLee for converting the interview into streaming format
Kay, our generous flag bearer

Sunday, March 05, 2006

Pat's life with PKD

Pat Pokorny lives in Indianapolis, IN. She is a mother, a widow of a Lutheran pastor and a volunteer. Last year she retired from a career of work with the blind and visually impaired.

Pat Pokorny is the youngest of 10 children. Her parents were immigrants from Sweden and Denmark who settled in Iowa and worked in business and farming.

Her oldest sister was at medical school when she discovered that she had polycystic kidney disease (PKD). Medical history suggested PKD came through Pat's mother's family. Just a couple years later, when Pat was 12 her mother became extremely ill and died of kidney failure. Ultimately 6 of her brothers and sisters would be afflicted by PKD. 3 died from brain aneurysmms and 3 others were on dialysis before passing away.

When Pat married she discussed the possibility of PKD with her husband, Dan. Medical tests confirmed that cysts had begun forming in her kidneys. She had PKD. During pregnancy Pat's blood pressure increased. It was the first of many PKD symptoms which Pat would monitor the rest of her life. Through medication, healthy living and diet she managed her PKD and lived without significant restrictions.

In 1990 Pat's husband passed away. Pat, now in her mid 50s, went to college and received a Masters degree in Orientation Mobility. She moved to Indianapolis and began work at an Indiana state agency for the blind and visually impaired. The effects of PKD became more restrictive and Pat was assigned to the kidney donor list and began dialysis. She was able to continue to work during that time.

In 1998 Pat received a kidney transplant. She carefully monitors her health and has been able to accomplish much in the time since her kidney transplant surgery.

She worked 7 more years at the Indiana Bosma Center for the Blind. Following is a note from one of her clients sent on her retirement.

Pat,
You have touched so many lives, including mine. I believe my words were "I don't need a cane"! Showed me didn't you.
Thank you for giving me strength and courage to "see" in other ways. I also enjoyed our talks along the way on many subjects.
Best wishes, Elizabeth


Since receiving her kidney transplant Pat has completed the Indianapolis Half Marathon three times. She traveled to Macchu Picchu, Galapagos Islands and viewed Polar Bears in Churchill Canada. She is loved by her grandchildren and sees them as often she can. Last year she helped plan her daughters wedding.

You can read the PKD story of Pat's brother Bobby's family at the In My Generation blog post from early June.

Friday, March 03, 2006

The Pikes Peak Park Plaza (on wheels)


Mom bought the trailer.

When she was on dialysis she put together a list of things she would do if she weren't on dialysis, i.e. if she could get a kidney transplant. There were trips to Macchu Pichu, Galapagos Islands, the Indianapolis Half Marathon and RV touring after retirement. This trip was a bit of a challenge from me to my mom to "go for it".

The trailer comes gently used and perfectly configured for our adventure. We'll have to paint a big "Pikes Peak Or Bust! on it. We had a "picnic lunch" in the trailer with my son Clayton this past weekend.

Wednesday, March 01, 2006

I'm in for 26.2 miles

Together with a bunch of other 180 Energy Runners (my local running team) I'm registered for the 2006 Pikes Peak Marathon. Four 180 Energy Runners went to the race last year. Registration started today and the remaining slots will fill fast due to the recent publicity in Trail Runner Magazine.

Check out the course profile to the right. Simple. Run up then go back down.