My Mother's Interview

Video links of my mom's interview describing her experience with PKD and her kidney transplant were lost so I uploaded them new to YouTube.
Part One: PKD and the Florine family The first diagnosis, the loss of her mother and the impact on her brothers and sisters
Part Two: Pat is diagnosed with PKD Being tested before having kids, dealing with the diagnosis, the tendency towards denial and the unbelievable comments of a medical student
Part Three: Dialysis then a transplant Dialysis experience, the transplant list, the donor and others who benefited, the donor was a perfect match “it was as though he were like my son”
Part Four: Eight years after A list of goals written in hope of a kidney transplant, what she’s accomplished, she monitors her health and volunteers for organ transplant awareness
Part Five: Work with the blind and visually impaired Pat worked to develop mobility skills for visually impaired adults, she describes the work and the clients
Part Six: For PKD research and organ donation We hope to raise PKD awareness, what PKD Foundation can do, the need for more Americans to become organ donors

Original Story - FOX2 News

David Eckstein helped us

Congratulations to World Series MVP David Eckstein. The night before we left, August 3, he greeted the St. Louis PKD Foundation at batting practice before the game. His work and contributions for organ donation are tremendous.

Post-Dispatch (Sep 2)

Visit the St. Louis Post-Dispatch website or click the image to the right to read the article written by Kathleen Nelson. Thanks Stephanie for the great photo they used with the article.

Colorado Springs Gazette reports from the finish line

Milo F. Bryant a columnist for the Colorado Springs Gazette interviewed mother and I at the finish line. His story is a great wrap-up. Family’s journey is for good cause. Also mentioned in his blog at blogspot.com

Thanks everyone for your prayers and calls. Mother, Clayton and I are doing well after our auto accident returning to St. Louis.

Opportunities in life are given. It's up to us to accept them. We are so glad we went after this one. It was awesome!

Success

An incredible day on the mountain for PKD, for organ donation and for St. Louis. My friend and running bud Zac Fruedenberg took 3rd in an extremely competitive race. He ran a truly brilliant race and his success is awesome! My own race was a thrill. I ran strong up the hill, paced myself down the hill and finished in 4:46. I finished 22nd overall. But hooray! I got beat by two girls so when they seperate the results I get 20th.

There are a couple pictures before and after.

Mom and I want to thank everyone for supporting our dream of sharing this together and making a difference for PKD and organ donation. We wouldn't be here without you.

AMEN!

Denver

On Thursday, FOX31 "Good Day Colorado" invited us on-air. FSN Rocky Mountain is going to produce a feature about our efforts for PKD and organ donation. Lots of new photos posted. We raised the PKD flag at the Rockies game. Today and tomorrow we'll have a booth at the Pikes Peak Marathon. The other 180 runners have arrived from St. Louis.

Yesterday Bill Wrede had to fly home. Thanks Bill for joining the team for these 10 days. I needed your help more than I realized. It was so much fun with you here.

“If you only knew the half of it.”

Have you ever discovered that “what you thought you knew” was just the surface layer of understanding?

When my “eyes” were opened to how PKD and organ donation affected my own family, I was stunned. As a child or teen or young man, I had no idea of my mother’s feelings about having PKD. I couldn’t appreciate her experience of losing her mother, sisters and brothers to the disease, and wondering how PKD would affect her children. And, even though I was there, I didn’t fully appreciate the incredible gift the day another man’s kidney began purifying my mother’s blood.

When I began talking to people about PKD and organ donation my eyes were opened again. Beyond the weather, sports, movies and the price of gas – beyond the superficial - people are compassionate. People share stories of PKD, celebrate their loved ones and talk about the impact of organ donation. And always with organ donation there is happiness. Joy and comfort in the stories of loved ones who gave. Warmth and gratitude for those who have received.

Today I was blessed to talk with Meghan and Zanthe about their sister Brie. Brie lived with joy, happiness and a fatal heart condition. Brie registered as an organ donor. When she was sixteen and her heart failed Brie gave life and sight to others. She gave inspiration to her sisters. She made a difference in this world.

Brie’s family operates the Manitou Springs Wellness Center. Meghan is helping me get the road soreness out of my quads so I can put some trail soreness in them on Sunday. Thank you for letting me write about your sister.

PKD to the summit

We took the cog railway to Pikes Peak summit and raised our flag signed with the names of people with PKD. So great to be there.

A story about PKD and the ride which aired on KOAA in Colorado Springs is on-line. Watch the story here. On Thursday we'll get a chance to talk about PKD and organ donation during the FOX13 Denver morning news and the FSN Rocky Mountain Rockies telecast.

Hooray!

We pulled into Manitou Springs this afternoon. Today's mileage 53. Total 990 from Fort Bellefontaine. Feel really good. Tired but excited about the marathon on Sunday. I am so grateful for this opportunity with Mom. THAT IS what the bigger picture is all about. Don't waste opportunities. Help others through organ donation. Appreciate the challenges others may be facing, especially life-threatening diseases with no outward signs like PKD. Help if you can.

Thanks everyone.

In sight of Pikes Peak

We're camped in sight of Pikes Peak. We ended just ahead of a thunderstom which is now raining on the KOA-Pueblo campground. Rest on Sunday, finish up on Monday. 168 KM (about 105 miles) today. About 935 miles so far.

Until tonight, I had not really "stepped back" to look at a big map or think about what has happened since August 3rd. We've been remembering funny things but we get the days mixed up and can't remember what day it happened. Check the photo gallery.

We need this

Tonight I am so grateful. What a privilege mom and I have been given to be supported by friends in our effort to raise PKD awareness, fund research and encourage organ donors. I thought of this while riding and have been eager to type it. Mom and I received these two emails. Following are excerpts:

“While my family’s struggle with this disease has been a continuous one, my personal fight has only recently begun. I really haven’t shared my diagnosis with many people, but I wanted you to know that I was touched by what you've done! You've reminded me that I don’t have to fight this battle alone and that there are so many options and so much growing support for those affected!”

“Just wanted you to know I have signed the back of my license for organ donations.”

America needs this. Families and people with PKD need to know that America appreciates what they are battling. And America, you need to help by becoming organ donors to save the lives of your child’s teacher, your favorite waitress and your friends.

MISC: 245 km today. We’re a day ahead of schedule and 20 miles west of Lamar. Thanks to Max Stephenson who bought tubes and a patch kit last night and handed it off in Garden City this morning. I used one this afternoon. New pictures in photo gallery.

Take today away

Rode 122km on Wednesday. Got to Larned at 1:15. The temp was 105 with 14mph SW headwind. There was nothing between Hutchinson and Larned. No 7-11, no gas, nothing. If not for mom I couldn’t have made it. That’s why this is OUR Ride to Pikes Peak. We’re a team. I would not be here without mom. Today could not have happened except for a man in Indiana who became an organ donor. Take today away. The day he signed up as an organ donor was a day that saved the lives of at least 4 or 5 people including my mother.

Stop .. take a second .. imagine the ways that man’s signature changed the lives of donor recipients, their families, their neighbors, their co-workers, society.

ADDENDUM
Thursday rode 132km to Cimmaron. Put a few extra miles “in the bank.” Colorado border is getting close. -- Lots of new pictures from Wednesday and Thursday. -- In Larned we met David Clapsaddle, a Zebulon Pike expert, who has a Spanish artifact discovered at a site where the Spanish searched for Pike's group. -- Called Cornbread show on WIL. Thanks CB and Pat for putting PKD out there. -- Will get silly with Bill and mom in historic, tourist Dodge City. Cookie gets a rest as we go out for steak.

"People of the South Wind"

Tip: Remember obscure knowledge so you can blog it.
Kansas takes it's name from the Kaw or Kansa Indian tribe which means "People of the South Wind". It was blowing today and I was eager to turn north after Wichita and enjoy the wind at my back. Still ahead of schedule, made it to Hutchinson and are camping at Melody Acres RV Park. Rode 142km today and I guess we're about halfway.

Wi-Fi at the campsite. Much new at photo gallery and NEWS links. Thanks Patrick and Annie for getting the KLOU interview and AP wire story.

MISC: Thank you JC and KHTS for morning segment for PKD. Thanks everyone for guestbook and donating to PKD Foundation at the link to the left. Mom's camp nickname is now "Cookie": Good eating! Riding at sunrise tomorrow to beat the 100+ forecast.