Ride to Pikes Peak

My Mother's Interview

2013-06-18T21:52:00.003-05:00

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

2007-02-03T23:42:00.000-06:00

David Eckstein helped us

2006-11-02T14:23:00.000-06:00

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)

2006-09-03T20:31:00.000-05:00

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

2006-08-23T10:43:00.000-05:00

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

2006-08-20T14:21:00.000-05:00

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

2006-08-18T15:11:00.000-05:00

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.”

2006-08-16T19:42:00.000-05:00

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

2006-08-15T15:51:00.000-05:00

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!

2006-08-14T17:00:00.000-05:00

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

2006-08-12T16:38:00.000-05:00

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

2006-08-11T20:07:00.000-05:00

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

2006-08-10T15:20:00.000-05:00

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"

2006-08-08T17:02:00.000-05:00

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.

Flat Kansas is fine

2006-08-07T16:43:00.000-05:00

Great day. Did 174km today and made great time. Flat, big ring all day long. Rode Hwy54 across Kansas and was hoping for El Dorado when my second flat tire of the day, my botched fix (I pinched the replacement tube), and a coming thunderstorm conspired against us. Good enough. We're ahead of schedule and having a lot of fun. Thank God for the good weather. You can manage the heat with fluids but you hate riding into a headwind.

While riding I thought about the PKD story shared by a friend. Her college roomate has PKD and is facing renal failure. She discovered it during college. Her mother had not yet told her. The diagnosis fractured and damaged her relationship with her mother for many years. --- There is no treatment and no cure for PKD. --- Perhaps the mother hoped her daughter was spared and perhaps she wanted her daughter to not worry about PKD when there was little she could do. I don't know. What I do know is that PKD attacks families. It attacks your opportunity to have a family and live with them. I thank God that my mother is here because of an organ donor.

Royal Treatment

2006-08-06T22:47:00.000-05:00

Sunday, we met the staff and volunteers of the PKD Foundation (based in Kansas City) before the Royals game, a tent and food and visiting. They said people have called and emailed with enthusiasm about what's happening. They loved the radio interviews which you can hear in the media links. As Jennifer said, "we got all the facts right."

After the "tailgate" we were invited on-field for a special presentation about PKD. We were on-stage in the media room as we waited to go on the field. What you can't see is the assembled media. Actually there weren't any! We were just fooling around. Seriously, it was a great thrill to be on the field in promotion of polycystic kidney disease (PKD) and now that our friend Bill Wrede has joined us, my son has returned to St. Louis and my friends have returned to work I'm ready to ride west. See the Photo Gallery.

Thank you for your prayers, comments in the guestbook and contributions. Mom and I thank God for his blessings and for the opportunity we have been given.

One state down, one and a half to go

2006-08-05T19:02:00.000-05:00

We're not in Missouri anymore. With my friends Tim, Matt and Scott we made it to Kansas late Saturday afternoon. Even with the heat we put the hammer down when we realized we were within 10 miles of being done. We took a group photo with everyone's families before wrapping up our group ride across Missouri.

Camped at Four Rivers Conservation Area, the spot where Zebulon Pike arrived on August 19, 1806 and stayed until September at the Osage Indian's village. I drank a coffee to Lt. Pike Sunday morning. Check the photo album for pictures of all.

FOX2 story

2006-08-04T23:15:00.000-05:00

FOX2 in St. Louis has generously provided their August 3 story about mom and my efforts for PKD. The story can be viewed by following this weblink. Thank you Paul Schankman and the editors and photographers for seeing the story and helping us honor our family and those with PKD. My mother and I saw it for the first time tonight via Internet and are without words.

Pike was here

2006-08-04T21:55:00.000-05:00

200 years ago today Pike entered the area that is now the Lake of the Ozarks. His camp of August 4 and 5 is just above Bagnell Dam, near the village of Lake Ozark. On August 6 Pike passed around Horseshoe Bend and headed east to make Shawnee Bend. His Journal entry follows. 4th August, Monday: We embarked early and continued on for some time, not being able to find a suitable place to dry our things but at length stopped on the east shore. --- The navigation had become very difficult from the rapidity of the current, occasioned by the rise of the water, which rose one foot in an hour. Killed two deer. Distance 10 miles. Rainy.

Caught up to Zeb

2006-08-04T20:49:00.000-05:00

We're at Lake of the Ozarks on the date 200yrs ago when Zebulon Pike arrived at the same spot. We're following his route on the Missouri, Osage and Arkansas Rivers. We drank a toast to Zeb at dinner.

The Lake of Ozarks is the best! Jackie Janus works on publicity for the Lake and since I first traded e-mails with her last week she has worked on promoting PKD and helping our effort. She helped line up TV and newspaper coverage including a front page story at the Lake Sun Leader. It's in News Links also. We met at the dam and after a cookie reception at Willmore Lodge she even helped us toast Zeb Pike! We love the Lake!!!

My cousin Angie whose family has PKD surprised us at the cookie reception. Feels great to be doing something, trying something to make a difference for families with PKD. We talked about House Bill 1227 which is struggling in the US House of Representatives. The bill protects from discrimination in health care and employment after genetic testing for disease.

Sunrise in wine-town

2006-08-04T06:40:00.000-05:00

It's beautiful this morning. Cool and refreshing waking in the Hermann City Park. Riding to the 19 bridge to meet our group which includes Mark Livesay from Ultramax Events. There's so many great pictures from the last couple days. DAMY put a bunch in the Photo gallery for me yesterday. I hope to get more up tonight.

The sister of the RV owner next to ours is alive because of a kidney transplant. Are you an organ donor?

What an opportunity we've been given

2006-08-03T22:41:00.000-05:00

With the help of so many friends (many you see in Photo Gallery) we are trying to make a difference for PKD. What we've accomplished is because others believe in what we're trying to do. This morning as we stood on the Missouri River bluff it was overwhelming to think about the things that people have done to help us succeed, their faith and trust that we should go for it. We're very grateful. It was chaotic with FOX2 live coverage this morning and I didn't get to thank our Vicar, Jason, properly for a wonderful prayer. With the hope of God's blessing we attempt this.

Mom is an awesome spokesperson for living with PKD. Just listen to an interview or watch a video clip in the NEWS Coverage. Her witness to the impact of PKD on the lives of Americans and her example of the courage of people to "live their lives" despite the diagnosis.

On July 15 Zebulon Pike wrote We sailed from the landing at Belle Fontaine, about 3 o’clock in two boats. ... Distance 6 miles. I'm glad we're making better time.

Off we go

2006-08-03T22:28:00.001-05:00

What a fortunate day. We had great weather to ride in and great people to be with. Friends Matt, Glenn and Tim rode along to Rams Training Camp. Then off to the Katy trail where we met Ron Walkenbach. Ron is a transplant recipient, corneal transplants saved the vision of both his eyes. We suffered a couple flat tires on the way but arrived safely in Hermann for Wiener Schnitzel. Excellent food for cycling.

We're camping at the Hermann City Park which has a public pool. Enjoyed the swim with Clayton. Travelled about 100 when it was all done.

What a night for PKD

2006-08-03T00:52:00.000-05:00

An incredible night for PKD at the Cards game. Bringing 40 folks from the St. Louis PKD Chapter on the field, our organ Donor Drive with Mid-America Transplant Services at Hrabosky's ballpark saloon, the opportunity to talk about PKD in the FSN Midwest Cardinals telecast and the chance to stand with mom on the field and smile that tomorrow we leave. I can't sleep.

Ride to Pikes Peak TWO

Jul 30, 2006 - 17 Photos

Cornbread cares

2006-08-02T22:42:00.000-05:00

Cornbread morning show on WIL gave us a great interview and you can hear it now at the NEWS Links section. Tonight James Perry and WIL got our organ donor drive at the Cardinals game the promotion it needed.

People are learning about PKD. People are learning to appreciate their co-workers and neighbors who might have PKD or even other kidney diseases. My neighbor Dave just walked up as we're packing the RV to wish us luck and say that his brother-in-law's family is facing kidney disease (not PKD). It's a small world. What you give comes right back .. right away.