athletes4heart

My Reminder

2011-11-10T06:08:00.000-08:00

I'll be the first to admit that I haven't exactly walked the straightest path. I'm not exactly one that can be quoting Bible verses with authority, but there is one passage I think about a lot during my training. I have it hanging up on my wall at home:

27 But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. 28 He chose the lowly things of this world and the despised things--and the things that are not--to nullify the things that are, 29 so that no one may boast before him. 30 It is because of him that you are in Christ Jesus, who has become for us wisdom from God--that is, our righteousness, holiness and redemption. 31 Therefore, as it is written: "Let him who boasts boast in the Lord." 1 Corinthians 1:27-31

This passage helps me with two things. First, it gives me the confidence that anything can be accomplished. And second, once it is accomplished I better remember Who helped me get there.

Survivor?

2011-09-21T14:08:00.000-07:00

The past couple of weeks I've been thinking back to when I was 18-19. What triggered these thoughts was the 9-11 aniversary and the fact that it was 10 years ago. I started thinking about my goals back then... and realized my path went absolutely nowhere close to where I thought it would go.

10 years ago I didn't even know about Congenital Heart Defects. I knew that I had a scar on my chest. I also knew that in no way did it affect my current life (except taking antibiotics before the dentist).
I liked my mindset 10 years ago... I was a driven ISU wrestler trying to prove myself on the mat. I had a great relationship with God and when I trained... I trained for God and family.

Fast forward through a bunch of life experiences and I can no longer say that I am not affected by CHD. Now I know families that have daily battles and have lost loved ones to CHD.

I am not a "survivor", CHD warrior, or heart kid. I'm Nels Matson, an athlete, a man, a coach, an advocate. I'm driven by honoring God, my family, and seeing to it that fewer and fewer life year's are lost to CHD. My heart is great! It's probably better than anyone who is reading this blog. In fact, I always joke that when my heart was reconstructed it was put back better than the normal heart (actually it's true).

From here on out, I'm not labeling myself as a "survivor". I feel completely blessed to have been given the ability to push my body through rigourous activities. I feel blessed to have a scar on my chest so I don't forget about the real survivors and warriors.

Red Headed, Speckled Beak, White Tailed Water Bug

2011-09-15T06:48:00.000-07:00

Sure, I may not be the fastest swimmer in the world or have the prettiest technique, but when I swim a flood of great memories enters my head.
My swimming started at Grandaddy's Lake. Grandaddy's Lake is Lake Table Rock near Branson, MO. He lives on a cove of the lake where he has been retired for several years now.

Grandaddy's lake is beautiful! It is in the middle of the Ozarks. On every side of the lake are trees and trees and rolling hills. It's not unusual to see a Great Blue Heron or Red Headed Woodpecker while swimming on your back. While looking down into the water you can always see Blue Gill and Sun Fish. If you swim to the bottom and lift a rock, the odds are that you will find at least one Crawdad.

Every summer each and every one of my cousins (myself included) would have a chance to spend a week with my grandparents.

Most of the week was centered around lake time. Every grandkids unspoken step into adulthood was swimming across the cove and back.

Of course, there were many small obstacles that we had to overcome before taking on the task of crossing the cove. The first step was to make it to the neighbor's dock. While I was working on this, Grandaddy would stand out several yards from me with a big smile on his face. As I would swim towards him he would gradually back up. He would keep backing up until I couldn't go any further and then he was always right there.

The other life guard and coach at Grandaddy's house was Winifred (Winny), the black lab. While in the water, Winny would never let us leave her sight! Most of the time, she would actually be swimming circles around us.

One contest at the lake was to see who could dive to the bottom of the lake and retrieve the biggest rock. This contest always put Winny on edge!

After a couple of years of working up my distance, I was finally able to swim across the cove and back. The celebration entitled me to call to tell Mom and Dad about this amazing accomplishment! It also helped my passage into manhood. Now that I could swim across the lake, I could swim with my older cousins, aunts and uncles, and my Grandaddy and dad!

Because of my love of the water and one unfortunate incident while jumping off the dock... Grandaddy called me The Red Headed, Speckled Beak, White Tailed Water Bug.

Ironman Louisville: Proving I am

2011-09-10T09:59:00.000-07:00

As I quickly found out at Ironman, everyone is competing to prove something. They are proving to themselves that they can tackle three daunting tasks in one single day. Some are proving to others that they can tackle this monumentous challenge.

I am no exception. There was little doubt in my mind that I could take on the Ironman challenge. I had no idea what my time would be, but I knew I would finish.

To me by finishing Ironman, I was proving something to the only people who said that I couldn't do something.

When I was in college, I tried to enlist into the Marines. They looked at my medical record and said, "We're sorry." I sent a letter and received the same response... not even given the courtesy of a physical.

I was upset to say the least. I wanted to serve and was told no.

I know that everthing happens for a reason and I'm very happy with the direction my life is taking me, but I hate to be told I can't do something.

You may know that the Ironman was started by a Navy SEAL commander, John Collins.

To me, completing the Ironman would prove to those (probably not watching) that I could compete physically with the military elite.

The week leading up to Ironman, I was watching a lot of Muhammed Ali videos. This was stuck in my head race day: "I wrastled with an alligator, I done tussled with a whale. I handcuffed lightning, Throwed thunder in jail. That's bad! Only last week, I murdered a rock, injured a stone, hospitalized a brick. I'm so mean I make medicine sick. Bad. Fast. Fast. Last night I cut the light off in my bedroom, hit the switch, was in bed before the room was dark... I'm gonna show you how great I am!"

The day started bright and early. I woke up at 4:30 AM and Denise and I drove to the transition area. All of the bikes in transition area were lit up under beaming lights. There was a silent intensity. Everyone was preparing their mind for taking on a day of pushing the body to its limits.

We walked 3/4 of a mile to the swim start where my number 992 was marked on my arm and my age was written on my leg.

Since the swim start was a time trial start, I had to walk another half mile to the back of the line. I waited for the start. Some people were quiet, just focusing their minds. Others were telling jokes, trying to keep their minds free. Others still were talking about Ironman competitions they had completed.

The cannon went off, and the pro athletes got their start at 6:50am. The national anthem was sung (although I only heard the end of it from my point at the end of line). Then the line started moving forward. This was happening!

I saw the dock that people were jumping off of into the Ohio river... and then the line stopped. A man was pulled out of the water and they were giving him CPR. He was blue. I'm still praying for his family.

After the man was rushed away on a stretcher, the line continued to move.

I was funneled down to the dock and jumped of the dock into the Ohio. The first 1350 meters were upstream. I couldn't shake the picture of the man I had just seen out of my head. It reminded me of my mortality and how out of control I am of when my last day will be. To add to the mental hurdles I was trying to overcome, my goggles kept fogging up and I couldn't see the buoys. I was being kicked and swum over.

I finally reached the red buoy that signaled the turn around point and my swim down stream instead of upstream. At this point, I was able to re-focus my mind and get going.

When I reached the end of the swim, I was very happy to see my bike... it wasn't hard to find. My swim time was not excellent.

The 112 mile bike portion was relatively easy for me. I was able to reach back on the strength of a day this summer. On day 2 of mine and Nick Busta's ride across America, we got a little turned around. Our day ended up being 145 miles that started at sea level and ended at 8,000 ft. We cycled into 20 degree weather and didn't finish until 1AM.

I thought about how easy this was compared to that... and the fact that I didn't have to do it again the next day! My focus just stayed on keeping my legs cycling at high RPM so I didn't wear them out for the run. I took every single fuling station and even stopped to dive into my special needs pack for a bagel and a red bull. The bike looped twice and we went through an area in Indiana full of spectators cheering at the top of their lungs that added some much needed adrenaline!

The bike course ended and it was time to start the final leg... the marathon. I was somewhat intimidated by the marathon since this was my second marathon ever. My only other marathon was a year and a half ago and I started with fresh legs.

The toughest part about the marathon was that it was a two loop course. On the first 13 mile loop you actually pass by the finish line. Then you head directly away from the finish line knowing that you have another half marathon to run.

When I headed back out to begin the second half marathon, Denise was there. She was cheering at the top of her lungs... cow bell in hand. It made me smile and gave me some much needed energy to "bring it home." I had a strategy going. The fuel stations were 1 mile apart. I ran to each fuel station and would walk through the stations grabbing water and pretzels. There were several times that the quote from Seinfeld would go through my head, "These pretzels are making me thirsty." I felt like telling this to the other runners, but figured the joke would be lost... so I kept it to myself.

Finished in 12:36:14 Time is different
because of time trial start.

I finally saw the finish line and heard the roar of the crowd gathered on 4th Street Live! I had thought about this moment for so long... and it felt as good as I had imagined. I ran through the finish line. My hands were raised above my head. I had done it. I'm an Ironman! My final time for the 2.4 mile swim, 112 mile bike, and 26.2 mile run was 12:36:14, only about 45 minutes off of the first Ironman champion back in 1978.

While I proved that with my heart defect I can finish an Ironman, there are still many with more complex heart defects than mine that take on similar challenges on a daily basis. Until every person born with a heart defect can finish an Ironman (if they wanted to) I am not done fighting for them.

My next challenge will make Ironman look like a walk in the park. I'm ready for people to start paying attention to this war... and join the fight!

Ironman Update

2011-08-20T11:58:00.000-07:00

One week from today I will be in Louisville, checking in my bike. My stomach will probably be unsettled, wondering if I prepared enough. Most competitions that are important to me I diligently train for. I haven't done that for this Ironman. My last entry, I talked about how I was going to increase my training until the Ironman started since I have procrastinated on the swim and run. The idea seemed great, but now I have a gimp hip.
The gimp hip is normal. There is a strange phenomenon that happens before all races... an injury pops up. It's crazy. I don't know why this happens, but it does. The injury always disappears race day.

The one thing I will keep in my mind during the race is how fortunate I am. Because of amazing research that went before me, I am not worried about how my heart will hold up during this race.

I have had a continual reminder of how our research battle is far from over. Emily, a beautiful 5 year old, is not doing very well at all. She went into have surgery a couple weeks before our cross country bike ride and I took her picture across America with me. She is one of the bravest fighters I know. I need you to please keep her and her family in your prayers. Here is her facebook page.

12 days

2011-08-16T17:42:00.000-07:00

"Trust your own instinct. Your mistakes might as well be your own, instead of someone else's."

~ Billy Wilder

I'm trying something that goes against all of the books I've ever read and all of the people I've ever talked to. I've decided that I'm not going to taper for my Ironman. My main reasoning behind this is drawing from the bike ride this summer. Day 1 and Day 2 of the ride I felt terrible, but day 13 and day 14 I was starting to feel pretty good. Maybe this philosophy will work... maybe it won't.

Over training?

2011-08-10T20:00:00.000-07:00

I'm now only two and a half weeks out from my first ever complete Ironman (2.4 miles swim, 112 miles bike, and 26.2 mile run).

Am I nervous... I'd have to be honest and say yes I am a little nervous. I'm not afraid that I won't be able to complete it, but I know it's going to hurt.

Since the end of riding nearly 4,000 miles across the country less than a month ago, I've had a rough time getting in a training groove. I did not swim or run one single time during the 46 day quest, so I've been trying to play catch up. Instead what I've been doing is overtraining for two days and then the third day having a hard time getting out of bed.

I've been watching plenty of training video, though!

Highlights from 2010

2011-04-29T05:33:00.000-07:00

Heart to Heart Reunion

2011-04-10T10:13:00.000-07:00

Yesterday was really an amazing day. I was invited by Chris Wilson to speak at the Heart to Heart Reunion. This event was held at St. Joseph's Children's Hospital.

It is such a cool event because it was designed to give kids some good memories of the hospital. There were so many fun activities. There was possibly one of the funniest clowns I've ever seen. He juggled while on stilts and had a four legged walk. They had face painting and all kinds of stuff I didn't get around to see. Oh yeah, and the Tampa Bay Lightning Thunderbug!

There were several children that stood out. One was an 11 year old named Tristan. I started talking to Tristan and quickly discovered that I was talking to someone who had a very much above average IQ. Tristan has already had three heart surgeries. He knew exactly what was wrong with his heart and about the new procedure done over a year ago that will hopefuly be his last. I'm glad I met Tristan now because someday he's going to be very successful!

These children I met are the my local inspiration. Since they will be on my mind for the entire ride, I wanted their autographs on my helmet. I received many awesome autographs.

In my entire life, I've only met 2 children and one adult with my specific heart defect... yesterday I met 3 children with my heart defect. It was really awesome meeting them!

I also met an 8 year old, Avery, with HLHS. Avery plays baseball at the age group above him since he is so talented. He's a great pitcher. I'll be keeping my ears open about future stories from Avery!

I met a little guy Luca, who is going to have his third surgery tomorrow. I could tell he's an extremely strong kid. He was laughing and having a great time yesterday! We'll be praying for him and his family.

There were two really fun heart friends that gave me their autographs, Allison and Emily. You could tell that they were having a wonderful time.

Yesterday was priceless. I can't wait to start Bike4theCHF and ride for all of these kids. They've all been through so much. Many of them are on an ongoing journey, but they all have amazing attitudes. I hope the money that we raise on this trip will fund research that takes away at least one procedure from one of these kids.

If you would like to donate to The Children's Heart Foundation through Bike4theCHF go to http://www.active.com/donate/bike4thechf

UNDER TWO MONTHS UNTIL GO TIME!

2011-04-03T17:47:00.000-07:00

I haven't posted for a little bit since there's been so much exciting stuff going on in preparation for Bike4theCHF.

Nick and I are less than 2 months away from starting our ride across America. I thought this year would be easier to train for than last year since I've been through it before, but I'm finding that not to be the case.

Like the children who face a surgery for the second time, sometimes it is harder when you know what it will feel like.

For the first week of our ride, Nick and I will be going at close to 120 miles a day with a few days of pretty rough terrain.

When I'm facing a tough workout I keep in mind the children like Trevor and Cole that will benefit from the research that will be funded through our ride across America.

Personally, I'm finding that diet is a very important part of the training. In the past, I've been able to eat whatever I want and train, but I guess at the ripe old age of 28 my body is telling me to eat right. Probably because of my not so great diet, my blood pressure was at 145/79 today. My pulse is still below 50 bpm while resting, though.

I'm really looking forward to the families that we will meet along this ride. We have so many great kids that we are going to meet. You will be able to meet them soon as we post our 2011 Kids4theCHF. These children were born with congenital heart defects and are really going to be an inspiration for Nick and I.

I feel so blessed to have Bike4theCHF bring the stories of these children to you. Their daily fights really put riding a bike 100 miles a day into perspective.

This week I'll be training about 15 hours. Since I'm also doing Ironman Louisville in August, my training consists of a mixture of cycling, running, and swimming . If people are interested, I'll post more of the specifics on my training.

Three Events, One Mission: To Eradicate Congenital Heart Disease

2011-02-13T15:30:00.000-08:00

Steve Catoe had a personality just like his blog "Adventures of a Funky Heart". In his blog he wrote about serious issues that people have to face while living with congenital heart defects, but always left you smiling with his sense of humor. In his life he fought an extremely tough battle with his heart defect, Hypoplastic Right Heart Syndrome, but kept everyone around him smiling with his incredibly positive outlook on life.

I can't find the appropriate words to describe Steve. He had an amazing love and feelings for all children and adults that were, in his words, "Cardiac Kids" or "Heart Warriors". He had extreme care and appreciation for all "Heart Moms" and "Heart Dads" who battle the battles with their Cardiac Kids and who are their voice. When he would talk about the appreciation he had for Heart Moms and Dads his voice would crack.

Steve died a little over two months ago at the age of 44. I only met Steve one time, but I read his blog every time he would enter a new post. I miss Steve.

He wrote a blog two days before he died that has been ringing in my head ever since.

"Awareness is not an endpoint for the Heart Defect community. What good is awareness if it doesn't bring people to action... It's time to declare war on congenital heart defects. All out, bare knuckle, unrestricted mortal combat...
THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL: To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So lets put our heads together... It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?"

This summer I will be putting my blood, sweat, and tears into raising money for research. My weapon is endurance athletics.

I will be starting with Bike4theCHF, a cross country bicycle ride with Nick and Jeni (HLHS) Busta. We will be cycling at a rate of nearly 100 miles a day in an effort to fund as much research as possible. The ride will start in San Francisco June 1st and end in New York City July 16th.

August 28th, a little over a month after our finish, I will be taking on my first ever Ironman- Ironman Louisville. An Ironman is a 2.4 mile swim, 112 mile bike, and a 26.2 mile run.

Then, October 9th, I will be running in the Chicago Marathon with my little sister, Astrid.

I need your help in these events. Here's how you can help.

Get involved with Bike4theCHF: http://www.bike4thechf.org/donate-or-register/ by riding or donating. If you would like a name of someone affected by a CHD's name on the bike, donate or raise $100 here (http://www.active.com/donate/bike4thechfnames). All money donated goes to The Children's Heart Foundation.
Let me know if you or your company would like to be featured in one of these events through a partnership with The Children's Heart Foundation. (Phone: 727-421-9487, or e-mail nmatson@childrensheartfoundation.org).
Register for the Bank of America Chicago Marathon for CHF (Contact clarson@childrensheartfoundation.org)
Run, walk, bike, swim for CHF: http://www.active.com/donate/thechfathletics

I share the same goal as Steve. Hope is not enough. Awareness is not enough. We need action.

This is the research that The Children's Heart Foundation was able to fund from 2010. The more we raise- the more we fund. Let's make 2011 huge and get one step closer to Steve Catoe's goal: To eradicate Congenital Heart Disease!

The Relation of Regional Brain Structure to Long-term Development and Behavior in d-TGA Patients

Computationally Guided Design of Biodegradable Drug Eluting Stents for the Treatment and Reversal of Vascular Stenoses in Children with Congenital Heart Defects

“The role of ETS-1 in the Neural Crest in Cardiac Development and Disease”

Fontan Conversion/Arrhythmia Surgery Long-term Database

“Creation of a Visual Encyclopedia Illustrating the Terms and Definitions of The International Paediatric and Congenital Cardiac Code, a system of nomenclature developed by The International Society for Nomenclature of Paediatric and CHD

A little about me...

2011-01-24T20:16:00.000-08:00

My parents, Shari and Kevin Matson, were going to have their first child. They were 26 years old and ready for this exciting new chapter in their lives.

I was born on October 2, 1982, as a healthy baby weighing in at a whopping 8lbs and 1oz.

My first routine check-up was at 6 weeks, with a very friendly doctor, Virgilio Pilapil. Dr. Pliapil happened to be a pediatric cardiologist. While doing the check-up he heard a heart murmur, but said that nothing was wrong and that heart murmurs were very common.

Everything was normal for the next 2 years of my life. I learned to crawl, walk, and run. All the normal stuff you do by two years of age, I had done. There were no major symptoms that anything was wrong.

In August of 1984, my family added another addition- my little sister, Gretchen. I tagged along with Gretchen for her 8 week check-up. Dr. Pilapil was also her doctor. Dr. Pilapil wanted to listen to my heart while I was there. It sounded like a washing machine. He did an EKG and then told my mom that she should take me to the cardiologist at one of the hospitals in Springfield. My mom, in the confusion, went to the wrong hospital.

When she made it to the right hospital they did an ultrasound, where they found a hole in my heart. I had two monthly check-ups and then was scheduled to have a catheterization in February. After the catheterization my parents were told that I needed surgery, but that they didn’t know the extent of my problem. The doctors in Springfield made contact with the doctor’s at Chicago Children’s Memorial Hospital. I still had no outward physical symptoms. Since I was not considered an emergency, my scheduled surgery was in July. My parents had to wait five agonizing months until their 2 year old would have surgery.

Joann Nieves(right), I met at CHD lobby day,
gave the pre-surgery presentation to my
parents. Joanne Mora(left)

I went in for my monthly check-ups in Springfield, which happened to be a teaching hospital. All the interns liked listening to my heart because it was so unique.

After the 5 painstaking months were over July 7th had arrived. I had to undergo some testing and my parents took two days of classes to prepare them for my surgery. They were told what I would look like and what to generally expect after my surgery. They were given presentations by nurses and doctors and shown a child recently out of surgery. This was extremely helpful because the sight of a child after open heart surgery is very hard to take in, but it makes it a little easier if the first child seen like this is not your child.

When going into surgery the doctors were pretty sure I had partial anomalous pulmonary venous return with an atrial septal defect, but didn’t know the full details. They would find out when they cut me open. I was taken in at 5:30 a.m. They put me on a heart and lung machine. After the first half hour of surgery my parents were told one pulmonary vein was going into my heart the wrong way, the next half hour 2, the next half hour 3. I had 3 out of 4 pulmonary veins going into the wrong side of my heart with a hole ( Atrial Septal Defect) thankfully draining some of the oxygenated blood to the other side of my heart. My heart was more than 3 times the size it was supposed to be. The surgery took three to four hours. I was taken off of the respirator within minutes of surgery.

After surgery, my mom said that I was a yellowish, greenish color. She said that I looked like a breathing cadaver with bandages and IV’s coming out of both feet and hands and a chest tube. I was with a young baby in this first intensive care room. There were nurses at pretty much all times in this room and I was only allowed to be visited by two people at a time. My burly uncle had to walk out of the room and cry after he saw me.

At the end of these two days my chest tube was removed. Doctors recommended that my parents not be in the room for this. Even though they weren’t in the room, they could still hear me screaming as the tube was ripped out since my skin had already grown to it.

I spent 36 hours in the next room with three other kids. After this I was put in a regular room. The same uncle who had been crying and couldn’t stand to see me, mustered up the strength to come back and visit. When he came to the room I wasn’t there. Of course the worst was assumed. I was, however, in the playroom being scolded by the nurses for moving chairs.

I was sent home after five days with just tape on my chest. The first time I saw Dr. Pilapil again you would have thought I saw the devil himself, but he wasn’t offended.

Thanks to the research on congenital heart defects that went before me, my surgery was extremely successful. I was cleared for all athletics at the age of 5. I took full advantage of this and began wrestling at 6. I wrestled all the way up into college and was a letter-winner for the Iowa State Wrestling team under Coach Bobby Douglas.

Recently I discovered that I was not a rare case and that many congenital heart defects are much more severe than mine. I know that research needs to be funded to help these children live active lives into adulthood. The Children’s Heart Foundation is funding that research. Last summer I rode my bicycle across the United States for The Children’s Heart Foundation. I will be doing it again this summer, but with a little more company!

Day 39 Rockwood, PA to Hancock, MD

2010-12-06T22:59:00.000-08:00

Day 39 had a wonderful start. Judy, the owner of the Rockwood Mills Shop and Hostel, sent us off very well. She gathered several Rockwood locals for us to meet and have breakfast with in the morning and told the local papers about us. Along with supporting us with room and board she donated $100 to The Children's Heart Foundation!

The ride started out on a slow very beautiful downhill grade. Since I was following an old rail trail the grade wasn't over 6%. I went through an old railway tunnel and popped out on the other side with a beautiful view of Maryland and West Virginia. Then I reached Cumberland and the fun and games were over. Instead of going through those beautiful mountains, now I had to go over them.

Thanks to the encouragement of Denise and frequently looking down at the names on the bike for inspiration, I got through it. On the last two miles of the trip it started to lightly rain, but then I arrived at C&O bicycles where I was greeted by Dennis and his wife, awesome people! They thoroughly cleaned my bike (it needed it bad after starting the day on trails). They also made a generous donation! All in all, it was a great ending to a rough day.

Day 40 Hancock, MD to Harrisburg, PA

2010-12-05T23:37:00.000-08:00

Day 40 was a beautiful ride through northern Maryland and central Pennsylvania. It was fairly uneventful and I made really good time. We passed plenty of Amish buggies and Denise bought me the best peach I've ever eaten, from an Amish road side stand. When we reached our destination the great people at Holmes Cycling and fitness gave me a free gator skin tire. This was great since I was on my last tire, and my front tire was starting to go. The only draw back of the evening was that the air conditioning went out at the hotel we were staying at. It's a good thing we brought along a fan!

As you can tell from the video, I'm starting to get a little "slap-happy". The day before this was a rough one for me.

"My Dad Could Beat Up Your Dad, But He Wouldn't"

2010-11-05T08:27:00.000-07:00

Have you ever had someone in your life that shows you how to live without saying many words? You're actually shaped by the lack of their words. They lead by their example. These people are few and far between, but I was fortunate enough to be raised by one of these people.

Some of you probably guessed who I'm talking about. My dad.

My dad has the strongest work ethic of anyone I know, and, even if I think hard, I can't ever remember him talking bad about anyone. He doesn't offer up advice, but whenever I ask for it he gives me an excellent answer. He's always there when I need him.

I live many miles from my dad, but this summer I had the opportunity to ride about 1,000 miles with him.

My dad trained hard for the journey and helped me keep a pace that stayed around 20 mph. Before I told him about this mission I had in mind, he never even owned a bike. He rode with me through the toughest areas. His first day, we climbed 5,000 feet in about 20 miles.

Many don't know this, but he missed our Davenport meet and greet because he was in the hospital with kidney stones. That didn't stop him, though. He was back on the bike the next day.

I have been very fortunate to have been raised by a quiet, but confident man. My sisters and I always loved the song "My dad could beat up your dad, but he wouldn't".

James's Story

2010-10-04T08:06:00.000-07:00

This is the story of James written by his mother, Mary Ellen Mannix. I had the pleasure of meeting Mary Ellen at our Philadelphia meet and greet.

"Show me a hero, I'll write you a tragedy." ~ F. Scott Fitzgerald

Ever since James died, I hated to hear about "miracles". While it is wonderful and heartwarming to hear of kids beating odds, James did not fit the traditional definition. Every baby is a miracle. James's story, his course of care and treatment is not what the heart community - or any, really -would refer to as miraculous. Miracles are not always what we want them to be. Sometimes, they take time to reveal themselves.

James had a day and half before his medical team, which included the renowned baby heart surgeon, William Norwood, decided to perform open heart surgery on him for a discrete coarctation of the aorta. In that day and a half James ate. He slept. He was awake. He opened his eyes alot. He would root for more food after he just ate. I swear he was trying to coo at a day of age too. He snuggled into my arms so deep and comfortably the one time I held him alive; we were like two perfect puzzle pieces. It was short lived because his dad and I were not included as a member of his care team.

We were not told they would perform open heart surgery on him. We were not allowed to be with him in recovery even though we would not leave the hospital. We were not told the treatment options that were standard available for treatment of his condition at the time. The little that we did ask, was denied.

James was prenatally diagnosed, was fully insured, had access to top level care. In reality, James was put on a recognized broken ventilator, his parents were not given full information as to the team's medical care intentions, was prematurely extubated, failed by his care team to rescue, suffered insult to his brain stem and cortex, endured ventilator induced pneumothorax, and his care team had poor hand off communications. These are just a few of the preventable errors that led to his death.

It has been nine years. Since his birth and in death he was neglected, lied about, and ignored. James's story is full of tragedy. There are alot of things people would rather not hear. The value of experience is to study it, share it, explore the what, why, and how of the happenings. The answers took well over five years to get/find/learn.. James's story is in book form that is now available for free to medical, nursing, and law students. It includes Dr. Norwood's thoughts too. While it is not an easy read, it offers helpful insights for children born after James. It is also extremely important for both patients and clinicians to gain a fuller understanding of how important communication is. It is more important than the number of surgeries performed or even clinical skill.

James's life is a message to all patients, heart parents, and clinicians - parents are a part of the care team. Pediatric patients are at all times the parent's child (ren). Never some doctor's or hospital's. James's miracle is that I still communicate with one of his doctors. His one time pediatric cardiologist and I suffered through litigation. James's innocence helped me remain hopeful in what I always believed. Physicians invest years of their lives to learn how to be the best at helping people - not hurting them. Parents and patients could help by remembering they are human too.

James will always be my little miracle. He was fat and round and cute as a button. We love him dearly.

He is everyone's hero.

http://jamessproject.blogspot.com/

Camden's Story (TAPVR)

2010-09-23T08:57:00.000-07:00

This is Camden's story from the words of his mom, Patty Cheshire.

Camden was born right on his due date, October 3, 2004, and weighed a healthy eight pounds, five ounces. We were elated, until a nurse took him for his first bath. Under the bright lights in the nursery, she noticed something about his skin tone that concerned her. Eleven hours later, we were told that Camden had a heart condition called Total Anomalous Pulmonary Venous Return (TAPVR). Our new baby required immediate, open-heart surgery.

There was no time to research his condition or compare hospitals, no time to talk to other parents or to get a second opinion. Only later did we learn just how fortunate we were that we delivered Camden in Pittsburgh, just a few blocks away from the Children’s Hospital, where a pediatric heart surgeon had just moved up from Florida with his team. Camden sailed through the surgery and recovery, and I am grateful beyond words to everyone who took care of him during his most vulnerable time.

Nels Matson is the first person my husband and I have met with the same heart condition as Camden. Just knowing that he is out there, twenty-seven years old and strong enough to bike across the country brings us so much hope for Camden’s future. Camden and his older brother Colin were just as excited as we were and had been drawing pictures, making video greetings for Nels and Denise. Bike 4 CHF was Colin’s show-and-tell at school and Camden’s answer to every “What are you doing this summer?” My husband Devon stepped up the work-outs for his 100 mile ride with Nels, and I started and ended every day checking the Bike 4 CHF blog.

Seeing Nels and Denise come around the corner in Melvan was just a great moment, not only for my hopes for my own son but for all the heart families. They are just as warm and fun in person as you are picturing. Out came the bike with all the names written on it, and there was Cole, the little boy who was about to have his third open heart surgery. There was Cora, the baby who only lived for five days but who is going to save countless lives because of her mom’s bravery. There was Luke, our on-line TAPVR friend, who made a little video for us at the Ohio stop. There was AJ Kahler. Since AJ passed away, his mother Denise has held two golf outings for CHF in his honor, and she has knocked it out of the park both times.

Anxious to make sure he wouldn’t hold Nels back, Devon brought along all the protein bars and fuel he’d need for the ride, only to find Nels got through the trip on Mike & Ike candies. (Mike & Ike, are you listening? Nels just biked across the country on your candy. You need to sponsor this guy!) We said goodbye, and I drove back home to find the boys had been busy turning the tree fort into a jungle for Nels and Denise’s arrival.

Even though he had a long day on the bike (and not because of Devon, he assured us), he had plenty of energy to spend some time in the tree fort and let the boys get to know him. Sunday evening, we had a wonderful turn-out for the Meet and Greet. Watching Camden hold sweet Lily, his youngest heart friend, was a happy moment for her mom Laura and me. While Fox News filmed, Lily, Matt, Andrew and Aaron’s names were added to the bike. Each of them has a powerful story to share, and everyone was proud to be there.

ABC News called while we were still getting ready the next morning. They were already waiting for us at the Wayne Art Center. Denise and Nels were the calm professionals; I was the one screaming “Don’t let the reporter leave! We are leaving NOW!” We had a great turn-out for the morning ride on Radnor Trail as well. Board member Kelly Ryan signed the bike in honor of her husband, whose heart was fixed when he was a toddler. I’d met Pam when I was picking up a donation for Hopping for Hearts, my first local fundraiser, and she was there to sign her son Brett’s name. Camden already had his spot picked out and added his name to the bike. Owen passed away when he was five and half months old, and he is the reason I helped start the Children’s Heart Foundation- Pennsylvania Chapter. Colin added Owen Benedict’s name to the bike.

As Nels started his final stretch, he was surrounded by all these little kids, ages four to seven. Some of them heard about the event from Colin’s show and tell, some were from Camden’s class. All of them seemed to know they were part of something special. ABC News captured Camden and Nels riding together. “Almost the same heart, almost the same birthday,” is how Camden describes their friendship. I call it heart research, showing off.

Day 41: Leaving Harrisburg

2010-09-13T18:10:00.000-07:00

Today I finally get to meet the Cheshire family! I've really been looking forward to this moment. Camden Cheshire was born with a congenital heart defect very close to mine and today I'll be meeting him and his older brother Colin.

First, I get to ride with his dad, Devon. Devon and Patty Cheshire left the Philadelphia area at a crazy hour in the morning to get a 7am start with me in Harrisburg.

Denise and I meet Devon and Patty at Holmes Cycling. They are great!

Devon and I head out. It's going to be another warm day.

Riding with Devon is fun. He is keeping a great pace and when he is struggling his dialogue makes me laugh out loud.

We ride about 90 miles today and reach the Wayne Art Center. Patty, Camden, and Colin are waiting for us there.

We go to the Cheshire house. When we get there the boys want to take us up to their tree house and show us something. Camden and Colin have made the tree house into a jungle theme. The whole floor is covered with grass. Denise and I go up into the tree house and find that the boys have gifts for us. They are Cheshire chests. As I understand, the Cheshire chests are given out one time a year. This year they are given to Denise and I. We are honored.

It's time for the meet and greet. I'm extremely excited because this is going to be our biggest meet and greet.

At the meet and greet are many great people. Among those great people, there are four individuals who would like to sign my bike. These four individuals are Matt, Lily, Andrew, and Aaron. Aaron has Hypoplastic Right Heart Syndrome. He will have surgery in August. If you would like to follow his progress this is his care page. Lily was born with Transposition of the Greater Arteries. Lily's mom has a blog that you can follow. The meet and greet is refreshing. I'm glad to meet everyone.

Here is news footage from the meet and greet.

We end the night with Camden singing "You'll Be in My Heart". I'm amazed that he know all the words to this song. He learned the song so he could sing it for little Lily.

A Preview of Day 41

2010-09-12T22:19:00.001-07:00

Brett's Story

2010-09-11T10:13:00.000-07:00

Pamela Faralli shares the story of her son Brett:

After many years of infertility and miscarriages, I learned I was pregnant with Brett. He was a twin which I lost but I still had Brett. I was thrilled. Because of my history, I was followed very closely by my doctors. At around the fourth month, the perinatologist found something on the ultra-sound that didn't look right. Although, she was not overly concerned she wanted a cardiologist to look at me the following month. The appointment was made and, in my fifth month, I had an extensive ultra-sound. I knew it wasn't going to be good news because everyone was silent and it took over an hour to perform. My husband and I were led to a room and the doctor said " this is a picture of a normal heart and this is a picture of your son's heart." You could see something was completely missing. My world changed in that second. Brett had a life threatening condition called aortic arch interruption and an extremely large VSD. This condition would not allow blood flow to the bottom half of his body. Also, with this condition comes a host of other abnormalities which were too numerous to mention. But, in order for the doctor to give any opinions on longevity, I had to have an immediate amnio. Although highly unusual that this condition is the only issue, we were blessed to find out we were one of the lucky ones and we were only dealing with the aortic arch and VSD.

We travelled to duPont hospital and met with Dr. Norwood. He was going to make everything alright and he was the best pediatric heart surgeon in the area and maybe the country. Blessed again. On February 10, 1999, I gave birth to a beautiful baby boy which I was not allowed to hold but for one minute and had to immediately be brought to the NICU for hormone shots to keep his ductus open, and about three different lines in to keep him stable. I heard everyone of his cries during that traumatic time. He then was immediately transported via ambulance to duPont.

Brett underwent open heart surgery which resulted in him going into heart block and needing a pacemaker for the rest of his life. There are worse things in this world than a pacemaker. I was not allowed to hold Brett and had to watch from a distance the nurses trying to feed him, change his diaper, etc. I felt so inadequate since I couldn't even do the most basic things for my own child. He wasn't my child he was duPont's. And, until he was out of the woods, I was just going to have to deal with that. After a month of a lot of ups and downs, we were finally allowed to go home. Brett could only eat about 2 ounces of formula every two hours. He had lost his ability to breath, suck, swallow. Every time he ate, he threw up and he had to be feed literally every two hours throughout the day and night. If he was sleeping, I had to wake him up. We had to go for weekly weight checks for almost almost five months.

Brett needed two angioplasties and an emergency pace maker change within the first year of his life. As exhausting as it was, (after writing this, I honestly don't know how I did all this) we have Brett with us today. He needed another open heart surgery in 2008 and may need a heart transplant down the road. I can't even think about that right now. I just want to enjoy our time together now and take life as it comes. I have already been more fortunate than a lot of people and I don't take that for granted for one moment. I call Brett my little angel boy because he is the sweetest. most caring person I know. Whether that is because of what he went through or just the way God made him I will never know. I am just glad that I am getting to see him grow up and become the person he is. That is such a gift.

Philadelphia to Westfield (7/19)

2010-09-10T16:21:00.000-07:00

As I'm brushing my teeth, Camden and Colin Cheshire are getting ready to go. They've been waiting to ride with me for a looong time! The back of Melvan has a magnet that they made. Needless to say, I was looking forward to riding with them for a loooong time too.
We are taking off from the Cheshire house and Patty's (Camden and Colin's mom) phone rings. It's the news station. We pick up the pace a little. At the Wayne Art Center there is a reporter waiting for us. Here's the report:

I meet several people that morning. Among them is Pam Faralli. Pam's son, Brett, was born with Hypoplastic Left Heart Syndrome (HLHS). She is here to write his name on the bike. Also here to write a loved ones name on the bike is Kelly Ryan. Her husband Sean Ryan was born with Coarctation of the Aorta. He is now a vascular surgeon and a father of four. Amazing.

Camden signs his name on the bike. Camden is our Philadelphia Kid4CHF and was born with Total Anamolous Pulmonary Venous Return, a condition very similar to mine. Now it's time for his brother Colin to sign the bike. Colin is signing the bike for heart angel Owen. Owen was born with HLHS. Today we'll be riding in memory of him.

It's time to head out.

Me and my little friends (Camden,Colin, Noah, Jesse, Nicholas, Willis, and Ellie) get ready to go... and we're off!

It is great riding with these little guys. I'm having some very interesting conversation. In 5 minutes we are covering all subjects from vacation homes to the fact that we don't wet the bed anymore.

I say goodbye to all my good friends in Wayne and start heading towards Westfield, NJ.

The first 10 miles are great, but now as I get a little closer to downtown Phili things are getting more confusing. Denise has the route information, so I have to wait for her to catch up. As I'm waiting, it starts to rain. Nice.

Denise catches up and we start slowly making our way out of the city. We think we're out of the "rough" area so I ride ahead while Denise fills up with gas. When she catches up with me again, she's a little upset. Some crazy man bumped Melvan at a light and tried to say she backed into him. No more on that....

I ride the rest of the about 90 miles to Westfield where we stop at an amazingly friendly bike shop, Jay's Cycle Center. They give my bike a tune-up and clean it completely. Great people.

Now it's time to plan our entry to NYC. Ray, a Westfield guy, helps me come up with a good strategy. Ellen Weiss comes out to Westfield to go over some of the details for tomorrow's Today Show appearance.

Denise and I are sleeping here at Darren and Michelle Composto's house. Before we go to bed we do a ceremonial ride with their kids Zach, CJ, and Ethan. I'll try to get some sleep tonight.

Words From The Mother of a NYC Angel

2010-09-10T06:24:00.000-07:00

The following is from Beatriz Collado, Charlie's Mom:

Charlie was our world. We were excited about her birth from the moment we found out we were pregnant; instant love. Even when we learned that she would be born with a CHD, our love and sense of protection only grew for our sweet little girl.

Being excited first time parents, my husband and I opted to undergo the integrated screening mostly for the ultrasound. We were excited to get a glimpse of Charlie and possibly take some pictures home to show off. Unfortunately, the ultrasound, during our 13 week of pregnancy, soon turned sour as we were told that things just did not look right and we should consider having an amniocentesis. At that point, our pregnancy turned from a delightful time in our lives to one full of worry and out right fear of what would happen to our baby.

We officially found out that Charlie had a condition called Truncus Arteriosus at an ultrasound during our 23rd week of pregnancy. The news was frightening and heartbreaking as we realized our little one would face difficulties early on that would continue throughout her entire life. We immediately began conducting research on the CHD, immersing ourselves with knowledge so that we would be able to give her the best opportunities possible. We traveled to different hospitals in Florida, New York, and to Children’s Hospital Boston to meet the cardiologist and surgeons to ultimately decide where Charlie would be born and undergo her surgery. After much thought, prayer, and research, we decided that Charlie would have the best care at Children’s Hospital Boston and made plans to travel from Florida during my last month of pregnancy in December of 2008.

December 2, 2008 marked not only our third wedding anniversary, but also the day we traveled to Boston to prepare for Charlie’s arrival. We were fortunate enough to be able to reserve a room at the Devon Nicole House and were naively optimistic about our daughter’s birth, surgery, and recovery. This was because after discussing her condition with several doctors in Florida and at the Boston hospital we were assured that her CHD was the “best” one to have and that she had a 90 something percent chance of survival. So, we anxiously awaited our ultrasound in a couple of days.

Our first and only ultrasound confirmed that Charlie had a CHD and that it was indeed Truncus Arteriosus. But, it also revealed two new startling revelations. Charlie also had Agenesis of the Corpus Collosum and she was quite small for her 37 week gestation age. Our world shattered once again as we now faced new challenges. In conjunction with our doctor, we agreed the risk of continuing my pregnancy a few more weeks outweighed the risk of inducing and birthing Charlie three weeks premature.

Charlie Elizabeth was born on December 5, 2008. She was 4 ½ pounds and she was a beautiful baby girl. Edward and I were overjoyed to have her and also eager to begin her treatment so that we could finally bring our baby home with us. Although our first five days were unorthodox as we spent it with her in the 8 South CICU at Children’s, we nevertheless had a beautiful week holding, feeding, and loving our little girl.

Everything changed on the fifth day of her life. Charlie’s surgeon, Dr. Pigula, was called in to perform an emergency surgery on our little girl. Charlie was so sick, my husband and I were invited back to see her for what they thought would be the last time. Thankfully Dr. Pigula performed surgical magic and was able to save Charlie’s life. Of course Charlie’s Truncus surgery was pushed back over a week. At this point, the doctors wanted to allow Charlie as much time as possible to recover before attempting to fix her heart.

The next 2 ½ months of our daughters life were filled with an immense amount of love, fear, sorrow, some joy, and hope as she underwent several open heart surgeries and procedures. We literally remained by her side almost 24 hours a day; rarely leaving for more than an hour at a time to work on chores. So much so we had the nurses trying to encourage us to take some time for ourselves. But, how could we really do this when our daughter was fighting for her life? Although Charlie was sedated for most of her life, we felt she could sense our presence and that helped her continue the fight to live. Also, the moments she opened her beautiful eyes or wiggled her toes and fingers, were always enough to bring joy into our hearts and renew our hope that she would survive this terrible ordeal.

Unfortunately Charlie’s battle ended on February 16, 2008. After a procedure to reinsert an arterial line, we were called back to our daughter’s bedside. One of the doctors met us outside of her door and immediately we knew something was wrong due to the sorrowful look on her face. She informed us that they feared that Charlie’s bowels perforated; the evidence was located in the tube of her peritoneal dialysis. We had to make the hardest decision of our lives on that day. We had to decide whether we would subject Charlie to more surgery to try and fix an unfixable problem since she was so ill, or finally provide her with the peace she deserved. At 4:44 PM, my husband and I felt Charlie’s heartbeat for the last time as we whispered words of love in her ear and played her favorite music in the background.

Aforementioned, our lives changed the moment we knew we were going to have a special child. After her birth, our lives were enriched with the beauty, innocence, and the strength Charlie exhibited on a daily basis. She taught us many lessons in her short life, such as the meaning of unconditional love and true strength. She taught us not to sweat the small stuff and to value the time we spend together and not the material items in our lives. Watching her overcome impossible obstacles and defy the predictions of the doctors showed us that it does not matter how small or young you are; love and the will to live can overcome almost anything.

We miss Charlie every day of our lives and continue to try and honor and preserve her memory in many ways. Through volunteer work with our local congenital heart organization, sponsoring toy drives for the patients at Children’s Hospital Boston, and raising awareness in other ways, we know that our angel is smiling down at us. Until the end of our days, we will continue to make Charlie proud of us. We will continue to keep her memory alive by sharing her story. We will continue to help others who are unfortunately suffering from a CHD. Our Charlie-Bear has made us stronger; has provided us with a clear purpose in life.

7/20 RIDING INTO THE TODAY SHOW

2010-09-09T15:28:00.000-07:00

My alarm is going off and it is only 2:30 AM. I jump to my feet because today I'm riding into the Today Show. I'm excited, but nervous. We work so hard in the world of congenital heart defects to get the severity of this problem in the national spotlight and I want to make the most of this opportunity.

I'm at Denise's cousin's, Darren Composto, house. I get dressed fast and climb up the stairs to grab a quick bite to eat. Darren's ready to go. He, along with three of his Westfield, NJ friends, is going to make the ride into NYC with me. The van (Melvan) and the bikes are good to go.

We climb in the van and head to Jay's Cyclery where Darren's friends are waiting for us. I'm thankful for the support of these extra riders. They add to the excitement of riding onto the Today Show.

I start off the morning with signing the bike for a man named David "Scott" Wherry. David's name is the only one that I signed myself. He was born in 1974 with Tetralogy of Fallot. David had been a teacher for 6 years, recieved his Master's in administration and was planning on becoming a principal, but he passed away on June 9th, 2007. His mom requested that I sign the bike in memory of him and I am happy to do so.

We dedicate our ride to Kid4CHF Charlie Collado (I'm adding another entry with words from Charlie's mom, Beatriz) and begin our 50 mile ride into NYC. It is about 3:45AM.

Not all of the guys I'm riding with are experienced riders, but they're full of heart. There are a couple of tough hills, but everyone is gutting them out. Time is starting to be a factor, so as we cross over the George Washington Bridge we split up and sprint the final miles into Rockefeller Plaza into the Today Show.

As we come into Rockefeller Plaza the Today Show crowd cheers. Denise is waiting for us, camera ready. A Children's Heart Foundation banner is in place and the Collado family is there. I'd been waiting to see them for 43 days. I hit my breaks and come to a stop. We did it. We made it all the way across America. Now we can put The Children's Heart Foundation and CHD's in the national spotlight. If only for a couple of minutes, maybe someone will be touched by these stories... maybe many people.

I'm introduced to the Collado family by Director of Chapter Development for CHF, Ellen Weiss. It is so great to meet them. Beatriz signs Charlie's name on the bike. I'm glad that this helps us remember and celebrate her.

Ellen's daughter, Lindsey Weiss, is also there. Lindsey was born with Tetralogy of Fallot. She has had several procedures, but is doing well and heading to college in the fall. She signs the bike.

Now it's time to go the green room. I go over my talking points a couple more times. We have about an hour and a half before we are on air.

I'm sitting and watching people leave the green room and then go on air. I'm coming up soon.

The moment is here. I'm taken outside to wait and talk to our CHF supporters. I'm just a little nervous.

Click here to see the interview.

The interview was great, but it felt so short. I hope I said the right things to push people into action.

This battle is over, but I'm far from done fighting the war to make these CHD children have fewer and easier operations... and just as important, make sure their CHDs are detected!

Here are a few pictures from the post event celebration.

Blogging Backwards: The Stories Behind the 39 Signatures

2010-09-08T13:26:00.000-07:00

I think that it could accurately be said that the 43 days from June 8th to July 20th were some of the best days and some of the most challenging days of my life. In the next 43 days I will blog my entire trip backwards, starting in New York City and ending in Santa Monica, CA.

I will share with you the pictures, videos, and ultimately the stories behind the 39 signatures on my bike. I'll mention the great cities that welcomed us with open arms. I'll also talk about the individuals who supported me through this journey, including my Dad (rode over 1,000 miles with me), my girlfriend Denise (who did everything but ride the bike), the NC Peleton (unexpectedly gave me a place to stay and rode out to meet me), a man in Pittsburgh who gave us all the money in his wallet, and many others.

I'm excited to share with you the journey of Bike4CHF(The Children's Heart Foundation). If you have any pictures to add or would like to put something in the blog, please e-mail me at ihavegumption@gmail.com

Stay tuned...

My little friend Aaron

2010-08-17T03:46:00.000-07:00

Sleeping was a little troubled last night. I've been thinking about a 2 year old named Aaron. Yesterday I found out that Friday Aaron will be going in for his third open heart surgery. I met Aaron and his parents at a meet and greet in Philadelphia during the bike ride. He signed my bike.

Aaron has Hypoplastic Left Heart Syndrome (HLHS). This means that his left ventricle was severely underdeveloped. His heart developed backwards so it was originally thought that he had Hypoplastic Right Heart Syndrome (HRHS).

Aaron is a very strong little guy. Please keep him in your prayers along with his surgeon, Dr. Spray.

I have a new compassion for parents going through these procedures with their children. Before going on this bike trip I knew very few CHD families. It cannot be easy to know your child is going to have an open heart surgery. It's not easy for me and I've only seen these children for a short period of time.

Bike4CHF Ride to the Finish Line!

2010-07-19T21:22:00.000-07:00

This has been an amazing journey so far and it is not over yet... Tomorrow Tuesday July 20th Nels And Bike4CHF supporters will ride from Westfield, NJ to NYC!

They will Ride the last leg in honor of New York Kid4CHF Charlie Collado.

Watch the TODAY show 9:20 a.m. Tuesday,July 20th to watch Nels Live in studio!

Where in the Nation is Nels? by ZmassageTherapist

2010-07-17T17:12:00.000-07:00

Early this a.m. the answer to that question was best put by Nels' niece Alexa...

The Bike4CHF journey from Hancock, MD to Harrisburg, PA was a total of 94 miles! Today it was a scorching 96 degrees and continuous sunshine, even still Nels arrived safe & sound at Holmes Cycles & Fitness in a bit over 6.0 hours!

...coming soon pictures and video diaries now that we out of the mountains and have network again..hooray!

Where in The Nation is Nels?

2010-07-14T21:49:00.000-07:00

Bike4CHF Columbus Ohio - Meet & Greet and Kick-off

2010-07-14T21:44:00.000-07:00

Ohio Heart Mom Julia and son, Luke (5yrs. of age/TAPVR) joined the Columbus Kid4CHF, Adam (15yrs. of age)and his parents, Tammy and Scott at the Meet and Greet in Columbus, Ohio. Lots of family and friends joined in and showed their support by buying the Bike4CHF T-Shirt to promote awareness! Wear them loud and proud everyone...

The Northstar cafe treated the Bike4CHF athlete, Nels and all of his supporters to a great night of food, drink and space for all the festivities. And as if that was not enough...Nels' night got topped off by a special trip to local favorite Jeni's icecream shop!

The highlight of the night...Luke signs the bike!

Luke stands proud to show his support by adding his signature to inspire Nels' journey all the way to NYC!

Then when the morning came...the festivities began again...NBC was on sight to report on the Bike4CHF mission for The Children's Heart Foundation.

Adam signed the bike and then his family rode out of Columbus with Nels to keep the Bike4CHF moving eastward to NYC!

Where in the Nation is Nels?

2010-07-13T20:00:00.000-07:00

Columbus Kick Off with NBC!

2010-07-13T19:49:00.000-07:00

http://www2.nbc4i.com/news/2010/jul/13/bike-4-hearts-36757-vi-17506/

WHO'S ON THE BIKE?

2010-07-12T13:46:00.000-07:00

Kids4CHF Jeni and Ryker

Jeni and her husband Nick have become very good friends of mine. They road the first several miles with me on a tandem bike.

Ryker is probably the fastest kid in California on 3 wheels!

Chase could not be with us for the kick-off because he was still recovering from a recent surgery. I hope I meet him some day soon! William Foley, Executive Director of The Children's Heart Foundation signed his name for him!

Kennedy surprised me in Victorville, CA. It was so nice to meet her and her mom, Marlo! We compared scars... hers was prettier than mine!

Nancy was our Kid4 CHF in Las Vegas. Nancy was able to have a recent surgery, due to advances in research, that has left her feeling much better.

Liam came out to sign the bike in Denver. Liam is one super smart kid and a great artist! He's been through a bunch, but still has a big smile on his face!

Brady is a tough little HLHS guy that started to wake up as the morning went on. It was great meeting him in Omaha!

Cole was a champ that rode the first couple miles with me in Omaha! He is having another surgery right about now. He's one tough kid!

Ryan recently graduated from highschool and will be going to college in the fall! He kept up with me for almost 10 miles out of Omaha!

I met Jacob in Davenport. What a classy guy! I had a great time talking with Jacob! He is a huge Cubs fan and, as far as I know, is a good luck charm for the Cubs!

Cassidy rode with me out of Davenport and brought a huge support group to join along. She hit 15 mph on a downhill while leaving the city! Cassidy is into fashion and design.
Cassidy, you can tell your friends that I'm still going East, not Weest.

Mitchell met me in Davenport. Unfortunately, he couldn't ride along due to a recent biking accident leaving his arm in a cast. Mitchell is an amazing public speaker! He really has a gift!

Ryan signed the bike in Chicago at the meet and greet. Ryan loves the pool and could probably teach me a few lessons on how to move around in the water!

Ben signed the bike in Chicago. Ben actually removed his traing wheels 5 days before riding with me! Ben and his brother Matthew rode out of Chicago with me! I could barely keep up!

Wilson was a very special baby. Even at less than a month old, he would grab his Dad's finger and look right at him. He's a heart angel now.

Jalynn was less than a year old when she became a heart angel. She made many people smile during her life!

Cora is a heart angel. She continues to touch many lives by spreading awareness of CHD through http://www.corasstory.org/

7.11 Dayton to Columbus

2010-07-11T10:58:00.000-07:00

Wright Brothers original Cycle shop start point.
A nice couple on vacation instantly offered to house us if passing through their town
Dad, too bad you're missing today... the new Gatorade tastes Like SKITTLES!
There is a nice wide shoulder!
Ah Springfield is a cute little town...BAM PHfffffttt 1st flat :-(

Oh now there are miles of construction forcing bike onto the unpaved tiny stone filled other side of the road.
It is the Bike4CHF version of Tour de France.

What else...could make the last 16 of 70 miles to Columbus more fun? POP! Poppity POP pfffft
Flat #2
Stay tuned..ZmassageTherapist

DAY 33 - Depart Indianapolis - Arrival Dayton, OHIO

2010-07-11T04:22:00.000-07:00

7.10 Where in The Nation is Nels?

2010-07-10T16:56:00.000-07:00

Well this morning he was here...

And now until tomorrow morning the answer to this question...Where in the Nation is Nels?

7.10 Indianapolis to ARRIVAL day Dayton Ohio!

2010-07-10T12:08:00.000-07:00

Todays Bike4CHF ride into Dayton has been hassel free. The only exception....baby it's hot TOT hot out here!

Nels' Dad Kevin will be returning home tonight. We can't thank him enough for the commitment to support Nels and keep it fun.

Nels is looking forward to riding with some Ohio cyclists that offered to see him to the next destination!

They are just 5 miles from the Wright Brothers original bike shop!
Pictures to follow later...
ZmassageTherapist

Watch the latest TV News coverage from South Bend IN!

2010-07-09T23:41:00.000-07:00

A surprise for Nels..

Visit the News and Sponsors Page on web: http://www.athletes4heart.com/SPONSORS.html

Before we left the Bike4CHF South Bend event, Indiana Heart Moms share their thoughts about Bike4CHF..

After the shared support & tears...the engines were roaring and they're off.

07.09 Arrival Day in Indianapolis & Meet/Greet Dinner by ZmassageTherapist

2010-07-09T20:53:00.000-07:00

Finally, the Bike4CHF team of Nels and Dad Kevin made their way into the INDY Cycle Specialist bike shop. We will gather at 6:30 a.m. on 7.10 and depart at 7:00 a.m. for Dayton, Ohio.

So pump up those tires, and come be part of the fun 112 mile ride into the Dayton Aviation Heritage Park, 16 South Williams, Dayton, Ohi0, 45402.

We had a great night gathering with Kristine and Ben parents of Cora Mae McCormick: Born November 30, 2009 and died December 6, 2009
(Cora's Story - http://www.corasstory.org/) Please take time to read about their efforts to support the CHD community.

Nels has been supporting the awareness of Cora's Story by wearing a Pink bandana (seen in several pictures since his journey started) in honor of Cora's Mom Kristine's declaration that it was her favorite color.

The McCormick's offered their own words and feelings to Nels about Bike4CHF...

In addition to sharing time and stories with the McCormick's we had the pleasure of meeting Max O. A young heart transplant survivor of age 12 at the front of the restaurant. An inquisitive Grandma asked about our Bike4CHF shirts and then...we had to have Max sign the bike too!

He is a thriving young man that was visiting in town for a Bowling competition with family and friends.
Thanks Max for sharing your story and adding that signature to Nels' pride and joy his road bike for all the Kids with CHD's.

Said Goodbye to...and Hello Indianapolis by ZmassageTherapist

2010-07-09T11:09:00.000-07:00

Where in the Nation is Nels?

2010-07-09T11:01:00.000-07:00

Where in the Nation was UNCLE NELS?

Sometimes we can't get the posts up fast enough! But Nels niece Alexa is keeping us straight on our whereabouts. Although we already passed through SouthBend our spokesperson Alexa still deserves a view...

Arrival day at Indy Cycle Specialists 7.09.2010!

2010-07-09T08:35:00.000-07:00

The owner Scott has extended a warm welcome to Bike4 CHF! John the mechanic has already fixed up Kevin's broken spoke and is fine tuning Nels' Scott S30.

ICS Rocks!

P.S.- Dale lives on Southbend!

I spoke too soon...

2010-07-09T06:23:00.000-07:00

Seconds after publishing the last post, the phone rings..."Dad has a broken spoke, drive up the 'The Beast'."

Our term of endearment for the Schwinn mountain bike sea salt beach rusted to the core Bike.

Well it is 'Bike4CHF' not sit in the van because you broke a spoke4CHF ... so Kevin will have one tough ride today and that great nap time just got cut in half!

Let's give a shout out for Daddy Matson and get a friend to donate today!

07.09 Kokomo to Indianapolis by ZmassageTherapist

2010-07-09T05:47:00.000-07:00

Today's 4:15 a.m. alarm came through loud and unwanted ;-)

Last night, after a wonderful home cooked chicken pot pie, with veggies, fresh flaky biscuits and speciality fruit filled jello for dessert by Nels' Great Aunt Nelle and Harold a deep sleep was easy to accomplish. Cousin Gary joined the dinner festivities too. Nels and I had a great time showing family the pics and video of all the amazing Kids4CHF and their communities of support.

The Bike4CHF team rode into Kokomo yesterday after several hours of heavy rains and wind on a debris filled road resulting in a cummulative 7 flat tires. Nels and his Dad Kevin were accompanied by South Bend's Greg and his support crew Scott and son from The Avenue Bicycle Station. A good time was had by all as you will see in posts of pictures and videos later today!

It's going to be a quick trip today to Indianapolis 23 of 51 miles are already behind Kevin and Nels. The early arrival will be made great use of catching up from 4 nights of less than 5 hours sleep.

After rest, a much anticipated meeting with CHD Cora's Story mom Blogger Kristine and husband is planned! We love meeting the faces behind the inspiration that is fueling the Bike4CHF fundraising and journey.

I have to run it's feeding time at the zoo...time to get their favorites out Chocolate chip Cliff bars and Sport Beans with Chomps!
Peace

Southbend IN 7.08 Departure

2010-07-08T06:00:00.000-07:00

Mother Nature was not very thoughtful this a.m. to BIKE4CHF riders Nels, Kevin and Southbend's own Greg!

South Bend Indiana - The Avenue Bicyle Station by ZmassageTherapist

2010-07-07T21:15:00.000-07:00

Wow! What an amazing group of people greeted us at The Avenue Bicycle Station in South Bend, Indiana this afternoon. Scott and Hanna Kelsey, are the owners of the bike shop and have organized a great event for their city, starting with a warm welcome and heartfelt words for Nels.

It has been our honor in South Bend, to meet the Parents of two amazing children that Bike4CHF is memorializing as South Bends' Kids4CHF (Jaylynn Velez and Wilson Kelsey) for the strength and love they left behind for their parents when they passed on from congenital heart defect complications.

These families are dedicated to raising the funding that will provide the vital research to have no other family go through the challenges and loss of child such as they have endured.

Nels shows and tells the Kids4CHF signatures on his road bike!

Bikes are racked, ready for showers, a nap and then sharing dinner at the South Bend Meet and Greet at Oaken Bucket River restaurant.

A fun night was had by all along the River, sharing stories, laughing and eating good food!

Thanks for the Meet and Greet South Bend...

We are really looking forward to tomorrows kick-off from
The Avenue Bicycle Station - 3716 West Mishawaka Avenue...see you there 6:30 a.m.!
We leave at 7 a.m. for Kokomo, IN.

Wear those Bike4CHF T-shirts and let's make some noise...

Left The Windy city 13 miles from South Bend, IN!

2010-07-07T11:27:00.000-07:00

ZmassageTherapist update...
Bike4CHF Nels Matson and Dad Kevin riding strong into Southbend Indiana. The Chicago send off was a great community effort. Check back later tonight for fun video and pictures!

7.05 Rochelle IL to Chicago

2010-07-05T08:03:00.000-07:00

Hopefully, today's weather will not be like yesterday...

Bike4CHF highlights from Davenport

2010-07-05T07:48:00.000-07:00

Arrival Day in Davenport - Nels post ride, waiting for mechanic Gage, to assess his bike after a long day that could of been short if not for strong winds.

Later that Day Bike4CHF hosted a Meet & Greet at Happy Joe's Pizza in Davenport. It was a great night for all. Kids4CHF tell how they feel about Nels right here...

Moving onto the Fourth of July Davenport kick-off LIVE from ALEXA...
Where in the Nation is Nels? (Uncle Nels ;-)

Thank you Davenport for your excitement and support for the The Children's Heart Foundation and Bike4CHF!

Kid4CHF meet & greet with CHF supporters in Davenport, Iowa

2010-07-04T04:04:00.000-07:00

After dinner Nels & Family with CHF Pres. Mick L. went to Whitie's Ice Cream and had a blast!

Extra Extra Read all about it...in the Quad-City Times

2010-07-03T13:06:00.000-07:00

Follow this link to read the Quad-City Times news article about Nels' BIKE4CHF mission and local Quad-city Kid4CHF Cassidy Glynn's journey in life with a CHD.

http://qctimes.com/news/local/article_1a05ffca-8654-11df-abe8-001cc4c03286.html

7.02 How does a Cyclone find Iowa City by ZMassagetherapist

2010-07-03T03:53:00.000-07:00

On Friday, July 2nd Bike4CHF Cyclone alumni departs from Des Moines for Iowa City.

He arrived at The Broken Spoke Bike Shop in Iowa City. Everyone at the shop was an amazing support...we even had a visit from the bike Doctor!

Athletes4heart rides with Des Moines Livestrong

2010-07-02T21:04:00.000-07:00

Atlantic Iowa was a great stop/start with great people!

2010-07-01T21:57:00.000-07:00

7.01 Meet & Greet in Ames, Iowa

2010-07-01T21:26:00.000-07:00

Nels was feeling the home-town love tonight, surrounded by friends & family from his own childhood days. Thank you to everyone that came out to show your support and appreciation for Nels BIKE4CHF. And we officially have our youngest, Kid4CHF signature on the bike with help from Mom Tess and Dad Awoke!

Where in the Nation is Nels?

2010-07-01T07:05:00.000-07:00

THE MOST RECENT PLACE WE HAVE ALREADY PASSED THROUGH...

6.29 - 6.30 - 7.01 by ZMassageTherapist

2010-07-01T06:46:00.000-07:00

We're catching you up on the past few days! First a send off video from Nels in Atlantic, Iowa. Then a few great slide shows from Bike4CHF journey from Lincoln to Omaha, Nebraska were Nels arrived at Green Street Cycles.

Green Street Cycles and Sarah were an amazing support team we thank you so much! Later that evening we had a wonderful time at a Meet and Greet dinner with Omaha Kids4CHF families supporters. All the staff in restaurant wanted the Bike4CHF badge buttons and wore them loud and proud too!

The big send off from Omaha with 3 Kids4CHF, Ryan, Cole & Brady and all their friends and family. Thank you to Cole's neighbors for your purchase of Bike4CHF T-shirts, they looked awesome riding down the street!

More great times with the people of Atlantic, Iowa will be posted tonight so check back to see the good times!

6.27 Lincoln, NE On The Road Again by ZMassageTherapist

2010-06-29T06:32:00.000-07:00

See you in Omaha!

I'M NOT A REAL CYCLIST?

2010-06-28T08:30:00.000-07:00

I've recently been accused of not being a real cyclist. Artificial... a phony... bogus.
How? How can a person cycling across the United States of America not be a cyclist? ... I don't shave my legs.
"Real" cyclists shave their legs. It makes them "aero-dynamic". I am dynamic, I thought. I have aero bars. I've been told that this still doesn't make me aerodynamic.

I have decided that I will become an aerodynamic, real cyclist. I will not only shave my legs, I will WAX them. It will be posted here on the blog and You Tube by video. I will, however, do this IF AND ONLY IF WE REACH $100,000 BY NEW YORK CITY. If we don't reach $100,000 by NYC, there is no wax on, wax off. If you want to see this happen, donate, get your friends to donate, and their friends to donate. Ask companies if they want to sponsor. Ask your workplace if they want to chip in. Get your workplace and community involved. Let's tear it up for CHD funding!

6.27 Where in the Nation is Nels?

2010-06-27T06:38:00.000-07:00

A few words from BIKE4CHF athlete, Nels...

Westbound George meets Eastbound Nels by Denise Zolla P.

2010-06-24T21:44:00.000-07:00

One journeyman meets another...

6.24 McCook NE - Straight from Nels himself by Denise Zolla P.

2010-06-24T21:39:00.000-07:00

Faces of People Saving Lives

2010-06-24T20:04:00.000-07:00

Kevin in Baker, CA

Brent in Las Vegas

Steve in Page, AZ at the Big Dipper Ice Cream

Anna and family in Page, AZ

Marie in Mancos, CO

Ellen in Durango, COBill and Lisa owners of Pedal and Powder in Pagosa Springs.

Jim (Isaiah's Grandpa) in Fort Morgan, CO

Liam

2010-06-22T20:08:00.000-07:00

Liam's interview with CBS4 in Denver

Today I had the privilege of meeting Kid4CHF Liam Adams and his mom Amanda. Liam is an amazing kid born with Hypoplastic Right Heart (TGA +Tricuspid Atresia + Hypoplastic aorta + coArc). Liam loves dinosaurs and is reading at a 5th grade level! Today, he greeted me in Denver and represented the amazing kids in the Denver area born with CHD. Liam has a big future ahead of him!

Liam and Me hanging with his new Build-a-Bear

Liam signing the bike.

Leaving Denver with Scott (owner of Salvagetti Bicycle Workshop)

Leaving mountain country

Arrived in Fort Morgan at Bicycle Livery and was greeted by Charley (shop owner)

Fairplay to Denver

2010-06-21T20:07:00.000-07:00

Alexa and I discussing how to get to Denver.This is the wide shoulder on 285 to Denver!

Saguache to Fairplay

2010-06-21T19:57:00.000-07:00

Be Part of Something Awesome!

2010-06-21T19:31:00.000-07:00

Written on 6/17

Yesterday was an awesome day. We received over $700 to help fund the CHD research grant. So many people are affected by CHD. Our waitress in Cortez lost a niece to CHD. Pagosa Pedal and Powder bike shop owner, Bill, has a grandson with CHD. CHD does not just affect the child, but the entire family.

CHD's are present in 40,000 births each year. That's about 1 in 100 babies. Of these children more than 50% will require at least one invasive surgery! How many lives do CHD's affect? Much more than 1 in 100!

I'm doing this bike ride to shed light on the fact that CHD research needs funding and providing an avenue to fund a research grant.

You can help save children's lives and you can say that you were part of funding a research grant! I'm asking you to give $10. Also ask your friends to give $10. By the time we hit New York City, there will be thousands of people that will have read our story and the stories of the little guys along the route with CHD. If each person that reads our stories donated $10 we would more than fund a research grant.

These children are not just numbers to me and these families have faces. This bike ride and the families I'm coming into contact with are inspiring me more and more to get a research grant funded! Let's bring hope to these children and families. You can seriously make a difference!

ZmassageTherapist4Athletes4heart - 6.17 Cortez CO to Pagosa Springs CO!

2010-06-17T07:18:00.000-07:00

See you all in Pagosa Springs! Here are a few pictures from arrival in Cortez, CO yesterday, 6.16.2010

Blue Skies and smooth roads in Colorado!

The much anticipated 4 Corners National Park.... :-(

6.17 Climbing from 6,000 to 10,000 today!

2010-06-17T07:07:00.000-07:00

It was 46 degrees when Nels and his Dad left the city this a.m., which city...let Alexa Nels' niece tell you!

Kayenta to Cortez

2010-06-16T20:16:00.000-07:00

Today was a 120 mile ride through some pretty crazy cross winds. I'm now in Cortez, CO and will be riding in some higher elevation.
Dad is riding hard and I'm pretty impressed with his shape. When I'm 53, I hope that I can do half what he has done.
I've been looking down at Ryker, Chase, Jeni, Kennedy, and Nancy a lot lately. I'm enjoying the ride with these guys in my mind and am taking it one day at a time.

2010-06-16T08:17:00.000-07:00

Nels' niece Alexa keeps him on track!

Where in the Nation is Nels?

2010-06-16T08:03:00.000-07:00

6.16 Kayenta, AZ to Cortez, CO from ZmassageTherapist4Athletes4Heart

2010-06-16T07:45:00.000-07:00

Straight from Nels in Kayenta, AZ.

Down Hill!

2010-06-14T20:33:00.000-07:00

Today was a fast day! The majority of the route was downhill or flat and dad and I topped speeds of 40 mph! The views were beautiful. We passed through canyons and saw amazing terrain! We ended in Page passing over the Glen Canyon Dam. Amazing!

The best part of the day, however, were the amazing people we met. Starting this morning in the hotel lobby and ending in an ice cream shop tonight, there were several people eager to help fund a CHD research grant! It really pumped me up! I'm ready to take on tomorrow!

Our Awesome waitress Melanie!

Dad and I icing in the 60 degree pool

A Message from: ZMassageTherapist 4 Athletes4Heart

2010-06-14T08:00:00.000-07:00

Hello Everyone, I, Denise 'Zolla' Pizzo will be guest blogging to keep you posted on the Athletes overall health & wellness for the duration of the amazing journey that began on June 8th from Santa Monica Pier, CA.

DAILY STATUS (Yesterday, June 13th)

Injury & Pain Report

Quadriceps are so sore that very light tapotement (rythmic tapping) was at a high pain level.
General decongestions strokes to aid circulation are all that can be tolerated.
Re-occuring Trapezius pain = several trap squeezes throughout riding day.
Night time decongestion of quads & hamstrings with Tramueel medical cream for athletic pain.

What's for breakfast?
1 Waffle with syrup
1 Double scoop Protein Shake
1 scoop of scrambled eggs

How does Nels keep his calorie intake up on the road?
Mike & Ike Jelly Beans (his favorite on June 13th this may change!)
Sweet & Salty Granola Bars
Oatmeal cream pies
Cliff Bars
Pears
Vanilla Wafer cookies

Yesterday Nels' Dad Kevin Matson joined the ride and had an excellent first day of riding through weather conditions from bitter cold winds, rain, snow, & even a bit of hail. Both Matson athletes are feeling some aches & pains but hit the road today with a great send-off in Kanab, UT. A great group of people from Motorcyclists to a Church group were staying at the hotel and when they learned of the journey they open their hearts and wallets!

Let the day begin!

Here is where we are going Dad!

1st hill from Kanab UT to Page AZ And their off!

My Dad Joins the Ride!

2010-06-13T20:37:00.000-07:00

Today was an all-around good day! My dad joined me and it was really nice to have good company on the road. We started the first 20 to 25 miles of the day with a 4,200 ft climb to 10,000ft. We had a little bit of rain, a little bit of snow, and even some small hail.

The views were breath- taking, though and to top things off at the end of the day, a nice couple in our hotel hallway donated $100!

-My Dad ate this orange like it was his job!

vegas to caliente to cedar city

2010-06-12T21:45:00.000-07:00

Yesterday started out amazing. Kid4CHF, Nancy, signed the bike. Nancy has lived a life battling with CHD. Two years ago, because of advances in research, she was finally able to have a mechanical valve put in. I believe it was the tricuspid valve. Nancy has a backwards heart, which made the procedure even more difficult. It was really great honoring Nancy and riding for her yesterday.

It was one of the more mentally difficult days I've faced. Yesterday took me a little over 15 hours. In the middle of the day I crashed and had to take a power nap. Several times I thought to myself that the task was impossible. The 20 mph headwind didn't help those thoughts. I finished and once again was very happy for the names on my bike pushing me along.

Today was a walk in the park compared to yesterday. It was 98 miles. I had two mountains to climb that were each around 6,500 feet. The only set back today was that it was around 50 degrees and raining. There were beautiful views today. It was a good one.

Baker, Ca to Vegas Baby

2010-06-10T21:31:00.000-07:00

Today started out rough, with a 40 mile climb. In my head I had pictured today's ride as flat and hot. Nobody told me that the Mojavie had mountains. I climbed from the entrance of Death Valley (Baker, CA) to over 4,700 ft. That was my good morning.

Another challenge: my backside was in pain today. It got better as I went, though.
The second half of my ride was very easy. It was mostly down hill and I had a strong wind at my back. The total mileage today was 102. The temperature barely broke 100 today. It was a cold one.

Tomorrow, I'm looking forward to meeting our Kid4CHF, Nancy Sintic-Schwartz. She represents the fact that CHD is a life long battle.

BIKE4CHF - Victorville to Baker, CA

2010-06-09T22:28:00.000-07:00

Today I left from Victorville, CA. I was very excited that a local CHD Kid, Kennedy and her Mom Marlo came out to meet me and support Bike4CHF.

Today was hot - 110 degrees and I had two flats, but the wind was at my back. It was a good day!

BIKE4CHF Kick-Off - Santa Monica Pier CA

2010-06-09T22:24:00.000-07:00

I finished my second day of riding today, June 9th and was very happy to finish before dark. Yesterday started off amazing in Santa Monica at the pier.

Bill Foley, the CHF Executive Director came out from Chicago to send me off. Kids4CHF, Jeni and Ryker, came out to give inspiration.

Yesterday: June 8th I had 2 amazing Kids4CHF, Jeni and Ryker come out to sign the bike and complete the first starting 1/4 mile ride with me. CHF Executive Director, William Foley signed Chase's (Kid4CHF) name since he had surgery only 1 week ago.

Ryker followed us with his big wheel and then I rode the next 7 miles with Jeni and her awesome husband Nick!

Somewhere after that in downtown Los Angeles traffic...I got lost. I ended up riding about 170 miles and climbing over 4700 feet. The majority of the climb was in one 14 mile segment. I knew it ws going to be bad when a sign said, "Turn Off AC for next 14 Miles so Car Does Not Overheat."

I was tempted to throw in the towel, but looking down at the names on my bike gave me my extra motivation. Jeni didn't have a choice when she was born with HLHS, but she is an amazing woman touching many lives because she was born HLHS.

I FINISHED.

CALM BEFORE THE STORM

2010-06-07T09:59:00.000-07:00

This morning I woke up with an incredible knot in my stomach. I layed in bed and thought about this being my last "normal" day until a month and a half from now. I thought about how my muscles feel now and how they are going to ache in the days to follow.
These thoughts were followed by an overwhelming feeling of having the opportunity to ride for so many kids that are living with congenital heart defects and to remember those who fought a brave battle, but are in heaven now.
I want this ride to be successful. I want to fund a research grant. I want people to know about CHD and for those who are in a CHD family to know that we are a family that helps each other get through struggles.
I would not be doing this ride if I didn't think that it could make a difference. CHD research has come a long way and it is saving lives, but research can't be done without funding.
I'm dedicating the next 43 days of my life to funding a research grant, but without your help... I'll just be a guy riding across America on a bicycle. Tell your friends... support financially... come out and meet me... make some noise!!!

40,000

2010-06-02T10:04:00.000-07:00

I've been enjoying my long car ride out to California so far. It never ceases to amaze me how beautiful our country is! Stopping at the houses of friends and family along the way has been very enjoyable as well.
So far on my journey to the "starting line" I've seen beaches, bayous, pastures, rolling hills and a man selling watermelon out of the back of his truck while stuck in traffic on I-75!
While eating brisket yesterday in Austin, TX, I was reminded, yet again why I'm doing this journey. My friend's mom, at the dinner table, became very emotional telling me about a young family that is very close to her. The family is waiting to deliver a baby with a congenital heart defect. It is a very scary time for them. I can't imagine what it must feel like anticipating your new child's arrival, but knowing that the child you already love is going to have to fight this battle as soon as he comes out of the womb.
Please keep this young family and the thousands of other CHD families going through these struggles in your thoughts and prayers.
Congenital heart defects affect 40,000 infants each year in the United States alone.

I HOPE WE DON'T HIT MANY SIGNS LIKE THIS!

2010-05-24T07:48:00.000-07:00

An old dog chasing a squirrel

2010-05-12T15:18:00.000-07:00

This morning I rolled out of bed slowly. First I laid on my back and counted to thirty. It was my version of snooze. Then I slowly sat up in bed. I could feel all of my muscle aches from the two fast pace workouts yesterday. I stayed sitting for about a minute thinking about my workout. This morning was a run workout. I took about 5 extra minutes getting ready, thinking about how I'd rather be sleeping instead of doing this run.

I started my run at a very slow pace. I was thinking about the new pains in my joints that I didn't have a year ago. I was thinking about how at 27 my body hasn't been able to recover as fast as it did at 20 or even 25.

Then, about a mile into the run I got passed by a kid, probably 18! It took me by surprise. From the moment I got passed until the end of the run, I felt no more pain. I was like an old dog who just saw a squirrel in his yard. Until an old dog is on his last leg, he's going to chase the squirrel.

I chased the squirrel for about 3 miles (out of my yard) and I ended up having an excellent workout. It's is amazing how big of a role our mind has with the way our body works!

The Strongest Woman I Know

2010-05-08T07:12:00.000-07:00

My mom is the strongest woman I know.

She had strength as she brought me into this world.

She stayed strong while talking to the doctors about my heart.

Before I went into surgery as a little guy she was strong so I could feed off her strength.

While I was in surgery she prayed so God would give me strength.

In my recovery we played so my mind could give me strength.

In my younger years my mom led by example and gave me strong values.

In high school she strongly supported me to apply those values.

In college, I struggled, but her strong persistence didn't give up on me.

Now, as a man, I'm able to stand strong because I had such a strong mom.

Happy Mothers Day.

The Spill!

2010-05-01T15:46:00.000-07:00

I've heard of car accidents from texting, applying make-up, or reaching down for a CD. I've heard of bike accidents from a sharp turn on a wet road or taking a drink of water and running off the road. I've never heard of anybody trying to take pictures while riding and then flipping over their handle bars, but it happened today!

Denise "Zolla" decided she would surprise me and take pictures while I was riding today. She had a little accident. As she explains in the video, I didn't see her take the spill. In my defense, I was "in the zone".

(She was able to save the camera)

Here are some of the pictures that she still managed to capture!
(I usually wear a helmet. Today I was on low traffic roads, but as we now see... that doesn't matter.)

We Can Be Heard

2010-04-25T19:16:00.000-07:00

On Thursday I participated in my first Lobby Day and went to Washington D.C. for the first time in my life. It was the experience of a life time!

The reason for going to D.C. was to get funding for the Congenital Heart Futures Act. The Congenital Heart Futures Act (CHFA) passed this spring, but now needs funding. We were asking for the funding of two things: "for the Center of Disease Control to create a National Congenital Heart Surveillance System" and "for the National Institute of Health to invest in CHD research across the lifespan."

I was given the opportunity to speak with one of the congressman who had a big part in getting the CHFA passed, Congressman Gus Bilirakis. Congressman Bilirakis is a very genuine man and it was great for me to be able to speak with him. While me and four others were in his office, he intently listened as each of us told our stories and the importance of funding this act for each of us. He then told us how CHD has affected his life. His nephew ( I believe) will be having an open heart surgery in the near future due to a CHD. Also, his Communications Director, David Peluso, was born with CHD and has had two heart surgeries. These were very great men and it was a pleasure being able to meet them!

Another very exciting meeting we had was with Congresswoman Ileana Ros-Lehtinen. She took the time to speak with us personally and was very positive about funding the CHFA. Her Legislative Assistant, Joshua Salpeter, spoke with us at length and gave us a "penny tour" (through the capitol building and surrounding tunnel system) of the White House.

We also had the opportunity to meet with the correspondents for Senator Nelson and LeMieux, as well as the Legislative Director for Congressman Diaz-Balart.

While I was in D.C., I also had the opportunity to meet many people interested in CHD research. The two people that I was able to spend the day with were Joann Nieves and Joanne Mora, who both work at Miami Children's Hospital. These two women are very passionate about their work and I had a great day with them. While I was with Joann Nieves, I found out that she had been at Chicago Children's Memorial Hospital in 1985 while I was there for my surgery! It's definitely a small world!

In Washington D.C. I started swelling with a sense of pride for living in this great country. I started to think how fortunate that I am to live in a country where I can ask the people that I vote for to do something that I believe strongly in. Anybody in our country can do this! It's an amazing feeling to know that "we the people" really can be heard!

My Dad and Smiling Ground Squirrels

2010-04-16T10:43:00.000-07:00

I think my dad will be riding a couple legs on the route. We haven't had an official conversation about this, but we have to redeem our last ride together. Since my parents live around St. Louis and I live in Florida, there haven't been many opportunities for me to cycle with him.

I wrote breifly about the last time we rode together in my other blog, but I think if we're riding together for a little bit this summer it is necessary to bring it up again...

In the summer of '06 our family took a summer vacation to Frisco, CO. I think it was the first full day of our vacation that my dad and I decided that we would ride on some of the paved trails around the city. Because my dad is competitive and I am his son we were going at a pretty good speed. Their were alot of turns on the trail and my dad was right on my tail. I came around one corner and there was a ground squirrel smiling right at me. If he wasn't smiling, I wouldn't have been phased, but I think he was smiling. I slammed on my brakes and my dad slammed into me. Thank goodness I wasn't hurt. I can't say the same for the other two parties.

My dad had blood all over his face and the ground squirrel looked about the same (yes, I still hit him). My dad ended up having several stitches and the ground squirrel didn't make it out of the hour.

So...this summer if you know my dad and I are riding together close to your town, keep some extra medical staff on hand. If you are riding behind me this summer dont worry...I'm not stopping for ground squirrels even if they are smiling!

Does anybody have ticket number ---------?

2010-04-11T14:31:00.000-07:00

Today was a great day! As some of you know a couple of weeks ago I was rained out of a raffle at the Gator Half Tri. Thanks to the Bradenton Running Club and Steve Litschauer Denise and I were able to do the raffle at the K-Swiss Heritage Harbour 10k this morning.

Thanks to our sponsors On a Shoestring inc., Joey D's Pizzeria, Superheroes, Jewelry by Marry Ann, Massage by Zolla, Big League Haircuts, and Sunstate Pest Management we were able to raise $184 for the Children's Heart Foundation. Also thanks to all the people who contributed by purchasing raffle tickets and took our http://www.athletes4heart.com/ information!

Denise and I had a great time at the event. It was beautiful weather and a very well run race! I always enjoy being around the Bradenton Running Club crowd. They're just good people to be around!

Also, last week Jeremy Ramos of Impact Digital Signs gave me an excellent opportunity to take advantage of his Digital Health EOSK in Citrus Park Mall.

If you live in Sarasota tune in this Thursday from 6-7pm to WSLR 96.5 for Local Matters. We will be on the entire hour talking about the ride and the Children's Heart Foundation!

Fuel the Heart

2010-03-31T10:36:00.000-07:00

Thanks heavily to Denise, we have our web page (http://www.athletes4heart.com/) up and running. Also, I now have athletes4heart twitter and an athletes4heart fan page on Facebook! Yes, I have joined the modern world! I am still without an iphone, however, and I'm trying to hold out as long as possible!

With all of the tasks of this bike4chf across America it can be easy to forget why I'm doing this ride. Yesterday after I finished a ride out on Longboat Key, I went out to the beach and just listened to the waves for a while. The sound of the waves helped calm my mind and I was able to think about the reasons I started out on this adventure. The reason for this ride is to save many children through research dollars and awareness! I'm not doing this ride for the joy of riding (100 miles a day is no walk in the park), but because I've seen that research dollars really work. In the last 10 years the CHD death rate has declined by 30% from research.

I know that people can read a blog or story about a CHD and think about it for a couple of minutes. That's is another reason for my ride. I know that people are impacted by face to face meetings. By biking across America I'll be meeting many people face to face. If people affected by CHD ride Bike4CHF their personal community can put a face with the problem.

I am fueled by people who are positive and passionate! If you have encouraging stories because of CHD research, if you know of encouraging research that is about to break through to benefit someone you love (or yourself), or if you are just a fighter please e-mail me your story (ihavegumption@gmail.com).

...and the clouds opened up

2010-03-24T17:21:00.000-07:00

The Gator Tri...tropical storm-type rain...flat tire on bike...swam in 60degree water with a scuba wet suit that looks like it's still on(chafing)... but I ran a good half marathon and saw a bald eagle. I finished.

Thanks to my Aunt Judy, Uncle Charlie, and my cousins Debbie and Mark,their kids Melissa and Tim, and my cousin John I had good cheering inspiration on the bike. I believe that I even heard cow bells.

On the run the Berg family(Zate, Sarah, Nicholas, and Trevor) were there to support me along with Barb an Denise Pizzo. It's nice knowing that someone cares if you finish!

Unfortunately, the raffle was not able to go as planned because of the rain. There was $5 from the raffle that is being donated to The Children's Heart Foundation. We are now looking for a new raffle venue and will keep you posted on the location.

Thanks for the fueling the body mix1!

Gator Half Tri Tomorrow

2010-03-20T13:34:00.000-07:00

Tomorrow's the Gator Half Tri and I'm ready to go. I was told since the water is cold the metabolism of the gators will be slow so I should have nothing to worry about!
We'll have a raffle for the Children's Heart Foundation as I'm competing in the event. Tickets will be $1 a piece.
Our sponsors are On a Shoestring, Sunstate Pest Management, Joey D's Chicago Style Eatery & Pizzeria, Snap Fitness, JewelryDesigns By Mary Ann, and Zolla Pizzo(MA#29599)Licensed Massage Therapist!
Our booth will be close to the Fruitville Library(start/finish line) on Coburn Rd.
Hope to see you there!

Jeni, HLHS Warrior

2010-03-17T20:20:00.000-07:00

Preparing for the bike ride across America, I've been able to come into contact with some really amazing people. One of these people is Jeni Busta.
She was born with Hypoplastic Left Heart Syndrome and might be joining us on the first leg of our journey. This is Jeni in an e-mail conversation I had with her:
"I've had 2 open heart surgeries. The 1st one on the day I was born, and the 2nd at 17 months old. Then after my 2nd open heart, my heart developed high and low heart rates ranging from 300 bpm to 18 bpm. As a result, I was one of the 1st children to ever recieve a pacemaker at age 3. I have a scar going from the bottom of my neck to my belly button. I was one of the 1st in the world to survive with HLHS. I would say top 10. They use to say I was 3rd in the world...That was until the internet and God has blessed me by letting me find other older HLHS survivors like myself. When Nick (my hubby) did the Ironman, He told me he wanted me to cross the finish line because I had never known what it felt like to cross a finish line while people were cheering for me. This past November I was able to do a 28 mile bike ride. It was huge accomplishment that I never thought I could do since my heart doctors would tell me that I couldn't do alot of things. My first heart appointment at an adult congenital heart doctor I was explaining to him that I always felt tired and could never seem to get enough rest. Then he told me that I needed more exercise and that was the reason why I was so tired all the time. At first I didn't believe him because growing up all I heard from the doctors were all the things I couldn't do and all the sudden he's telling me I need more exercise?! It was an amazing feeling. So, when Nick and I got married in July 2007, as a wedding gift he got me a pink bicycle. Ever since then, I have been riding."

If you or a someone you know is affected by HLHS Jeni urges that you contact her. bustasgirl25@usa.com

Here Are The Facts

2010-03-16T06:16:00.000-07:00

This weekend I was given very educated answers to the question I asked, "What is the leading cause of infant death?"

Some of the answers I got were SIDS, death due to smoking, and drowning. According to the U.S. Center for Disease Control (CDC) the top three causes of infant death are as follows:
1. Congenital Heart Defects.
2. Disorders related to low birth weight and short gestation.
3. Sudden Infant Death Syndrome.

It is interesting that we hear about SIDS more often that CHDs.
*It needs to be noted that I asked some participants "What is the leading cause of infant death in the world?" The more accurate question is "What is the leading cause of infant death in the U.S."

Siesta Key CHD Trivia

2010-03-14T17:04:00.000-07:00

Thanks Everyone!

Did You See Me Today At Siesta Key?

2010-03-14T10:05:00.000-07:00

Today I'm hitting Siesta Key. I'll be posting a video of our campaign later today!

Inspiringhearts.blogspot.com

2010-03-08T18:14:00.000-08:00

Today Teri from inspiringhearts.blogspot.com allowed me to put my reason for the bike across America on her blog. Her blog has several stories of incredible CHD people. Teri was born with Hypoplastic Right Heart Syndrome and her story is quite amazing!

Outspokin Bicycles

2010-03-07T06:25:00.000-08:00

Yesterday was great! Outspokin Bicycles in Clearwater, FL allowed us to share our journey with their customers during their customer appreciation. I really enjoyed myself at the event and had several great conversations with customers and staff! The Outspokin staff gave me some great pointers for the route, the bike, and nutrition! Their generous customers helped us add $38 to our fundraising amount and gave moral support!
One of the first people I met was on vacation from West Des Moines and is a fellow Iowa State Alumni!

Hearts at Play, Chicago 2/21

2010-03-04T14:25:00.000-08:00

Great Week and It's Only Tuesday!

2010-03-02T17:20:00.000-08:00

This week has been a great one and we're only a couple days into it. We've had several generous companies in the Bradenton/Sarasota area donate products for the raffle on March 21st to take place during the Gator Half Triathlon. I'll post a full list of the companies donating before the event takes place. There are some really great products and you don't have to be part of the race to buy a raffle ticket. All proceeds will go to the Children's Heart Foundation.

We also just got permission to set up a table at Outspoken Bicycles (2241 Gulf to Bay Boulevard Clearwater, FL 33765) to promote our bike across America and the Children's Heart Foundation. I would love to see you there!(Saturday, March 6, 4-7pm)

Trevor's Allstars

2010-02-28T18:35:00.000-08:00

Trevor was born in May of 2007 with a rare heart defect known as Truncus Areteriosus w/ hypoplastic arch, a VSD, and an ASD that was found during surgery and repaired. He has had two surgeries so far, I believe, and a stint put in about two weeks ago.

Tonight, I went to Hope for Hearts an event put on by his mom, Sarah. It was a great event and I got to see Trevor run around like the freight train that he is. As of now kids like Trevor will need continuous surgeries as they outgrow their heart parts. There is very promising research that will allow these heart parts to grow with kids as they grow. Children's Heart Foundation is funding this research. They still have many more requests for promising research grants than they can fund. Please be a part of changing this by helping out the Children's Heart Foundation by being a volunteer or funding research with your money.

Click here to visit Trevor's Allstars web page.

Here are some pictures from tonight.

Trevor's Family and me

Kids in front of band(Josh Helms Project)

Ellen Weiss(from CHF), Sarah, and me