Posts Tagged ‘Boulder’

The 2010 Bolder Boulder

May 6, 2010

An open letter to my Funky Heart friends in Colorado:

Hello from South Carolina!

I was privileged to hang out with all of you for a few days in Boulder last year during the Bolder Boulder. I had a terrific time; your state is beautiful and each and every one of you made me feel welcome!

Ever since I boarded the plane to come home, I’ve been thinking about coming back.  But I won’t be able to this year: On the day of the race, we’ll be celebrating my father’s 75th birthday!

Now dad’s in pretty good shape – he walks five miles every morning and I’m convinced that once he got used to the thinner altitude, he would do quite well in the Bolder Boulder! And what better birthday present to give yourself than to conquer the nation’s highest altitude 10K road race? But much to my disappointment, he’s certain that the walking trail in our back yard is just as good a course as the one you have!

So while I won’t be there in person, I will be there in spirit. Best of luck to all the Funky Hearts in this year’s Bolder Boulder!

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The Heart of a Warrior: A Funky Heart Interview

June 16, 2009

My friend Eliza recently took time to answer my questions about growing up with a heart defect, exercise, and participating in the Bolder Boulder 10K road race.

Born with Pulmonary Atresia with a Ventricular Septal Defect (VSD), Eliza underwent four heart operations as a child.  “I was never the most athletic kid on the block,” she tells me, “but my parents did encourage me to try lots of things.  Even though P. E. (Physical Education) was never my best or favorite class, I’m very glad that my parents followed my cardiologist’s suggestions and never kept me out of it.”  Eliza participated in ballet for eight years and was on the softball team for a year in middle school.

Her biggest challenge in 4th and 5th grade was trying to keep up when her school participated in the President’s Physical Fitness Challenge. The Challenge exposed her weaknesses: “I remember being reduced to tears when I didn’t understand how I was so bad at sit-ups and the mile run. It never occurred to me that it was because of my heart and the surgeries I had for it.”  Luckily she had a great P.E. teacher  in elementary school who emphasized that the important thing was to get outside, move around, and have fun.  “(She) told me that if I wasn’t dirty when her class was over, then I wasn’t having enough fun.  I’ll always remember that.”

Eliza also had another Physical Education teacher in high school who “taught me basic physiology, anatomy and the benefits of exercise.  Without those two gym teachers’ encouragement and knowledge, I certainly wouldn’t be as healthy as I am today.”

After graduating from both high school and college, Eliza took internships in a big city and started on a path that would lead her to the Adult Congenital Heart Association (ACHA). Describing those days as “a very dark time,” she tried to deal with adulthood, work, finding friends and doctors in a new city, and the realization that her heart wasn’t permanently fixed, all while being hundreds of miles from home. “I thought that I was entering a whole new, exciting world, but I ended up feeling very alone on so many levels.”

After a false alarm with her heart and without any guidance from her doctor at home, she finally found an Adult Congenital Heart Defect (ACHD) Cardiologist. A month or so after her appointment, she received a postcard in the mail from her new doctor with information about the Adult Congenital Heart Association.  She was curious to find out how other adults with congenital heart defects managed their health and how that worked in their lives.

Returning to Colorado, Eliza got involved with the group that would eventually become the Denver-Metro Area chapter of the ACHA. Little did anyone, especially Eliza, know what would come next!

Boulder, Colorado is the home of the Bolder Boulder, a 10-kilometer (6.2 mile) road race through the streets of downtown Boulder. Described as a “citizen’s race” because the majority of participants are not professional runners, the race is organized in staggered starting groups called “waves” that allow people of many fitness levels to compete at their own pace. The minimum requirement is to be able to walk 6.2 miles in two hours.  The event concludes at the University of Colorado’s Folsom Field with a Memorial Day celebration after the citizen racers take their seats in the stands to watch the professionals runners compete in their own 10k event.

“The atmosphere is so much fun!  Besides the huge number of racers, (53,000 participated in the 2009 race) there are radio personalities, belly dancers, celebrity impersonators, rock bands, people with their sprinklers on, Slip & Slides, and neighbors sitting in lawn chairs cheering on all of the racers as they pass.”

And that’s just the bystanders. A good portion of the runners let their sense of humor come out – there is no telling what you’ll see along the course. “There are people who dress up in funny costumes in all of the waves,” Eliza continues.  “There’s a guy in a gorilla suit who is usually in the very first wave.  I’ve seen people in frog costumes playing leapfrog in the walking waves. This year I saw a group of girls dressed like an 1980’s band and another group who was trying to do the race as a 3-legged race.  They have water and Gatorade for the racers at every kilometer and race officials all over to make sure everyone has a safe and really fun time.”

Eliza had been walking the Bolder Boulder course since she was a child, usually with her mother. “The first time I did the Bolder Boulder I was probably ten years old. It was my mom’s idea – she wanted to walk it and thought it would be a fun thing to do with me, even though she is the least athletic person in my family. I walked the race with her on and off for years until I decided to do it for my own health in 2006. “

“That year I invited family, friends and a few people from the local Adult Congenital Heart Defect (ACHD) group.  We thought, ‘Man, it would be great if we could do this and officially raise awareness for the ACHA!’”

ACHA president Amy Verstappen, Eliza and the national staff worked together to create the legal documents needed to make it an official event. The ACHA’s Bolder Boulder team was off and running!

“Given the economic climate this year, I am very proud that we raised over $1,300 even though it’s significantly less than what we’ve raised in previous years.  In 2008, we raised over $3,000 for the ACHA.  This year we had a record number of ACHA racers – 24!.”  (That number includes both Congenital Heart Defect (CHD) Survivors and supporters.)

A handful of ACHA members and supporters have come to Colorado from out of state to participate in the festivities. This year, there were people from California, Ohio, New York, Illinois, Pennsylvania, and South Carolina.

While those numbers are impressive, they’re not the essence of the event for Eliza. “Since I decided to do it (participate in the Bolder Boulder) for my own health, it’s been a positive goal that’s kept me exercising regularly,” she says. From her enthusiasm when she talks about it, you can tell Eliza is happiest about getting other CHD survivors to be active. “I’ve been thrilled to find out that our participation not only inspires our racers, but also people across the country and other ACHDers who aren’t quite able to do a 10k to figure out how to incorporate some exercise into their lives. I love that something that started out as a personal goal for me has mushroomed into an avenue and an inspiration for so many in the ACHA to be as healthy as they can be!”

As Adventures of a Funky Heart! readers know, I often ask interview subjects, “Do you have any wisdom or advice for young parents of Cardiac Kids?” Eliza didn’t disappoint:

“Medical interventions like surgery and caths (Catherizations) can help our hearts to function more normally, but that willingness to get out of the house, to get up when we fall down, to actually move around and exercise itself is what strengthens even hearts like ours and gives us the confidence, mental and emotional fortitude to manage our heart health as we get older.”

“For everyone, but especially for kids with CHD, exercise isn’t just about moving your body and making is stronger.  If the adults around you have the right attitude, it’s about having the self-confidence to try another way when you reach a roadblock.  It’s about learning to maintain and trying to top your own personal best. It can be about learning to be part of a team.  It’s about kids (teens and adults too) who have known what it’s like to feel incredibly physically weak and vulnerable, finding ways to feel physically powerful, able, strong and independent.”

As far as specific advice, Eliza says, “Anytime they are excited about doing something physically active, go with it! As long their cardiologist thinks it’s healthy for them, let them do the mile run – even if they end up being the last person who finishes it. It’s even more important for us to learn how to handle minor scrapes & bruises than most people because we’ll face so many physical challenges in our lives.  Resist the urge to run and pick your kids up immediately when they fall.  We need to learn that resilience. Let them climb trees. Let them fall and scrape their knees. ”

Eliza reminds us of a very hopeful statistic: “At least ninety percent of children born with congenital heart defects today will be adults someday. Always assume that your child will be in that ninety percent and treat them accordingly. Don’t forget to daydream about what you hope to do with your child and the kind of person that you hope they will become.”

ENDNOTE: Eliza was recently accepted into graduate school to study health promotion, partially inspired by her love of enabling CHD Survivors to challenge the Memorial Day race over the last few years.  She’ll be leaving the Denver area, but I’m hopeful that no matter where life takes her, she’ll always find her way home just in time to take on the Bolder Boulder!

I hope you’ve enjoyed meeting my friend;

The back of Eliza's 2008 Bolder Boulder shirt

The back of Eliza's 2008 Bolder Boulder shirt

Your Presence is Requested

June 12, 2009

I have to admit that I’ve been sort of busy – I was recently able to interview the Heart Warrior who organized and led our effort to run the Bolder Boulder. She’s got a lot to say about being active with a CHD, taking care of yourself, raising a child with a heart defect, and about the race itself.  It’s taken a little time to prepare the interview, but now it is ready. The interview will run on JUNE 16, 2009.

Heart Parents, Cardiac Kids, and other Heart Warriors need to read this interview.

I’ll be seeing you

May 26, 2009

Written at 10:02 AM:

I don’t like to say goodbye.

I usually don’t, especially to my friends who also have heart defects. Things can happen suddenly, and it is possible that my “goodbye” could be a permanent thing. Since starting Adventures of a Funky Heart! I’ve come to realize just how close most of us have come to shuffling off this mortal coil. And at times the danger is still there, lurking.

I wear my heart on my sleeve; I’m sitting in a shuttle bus heading towards the Denver airport trying not to crack up in front of my fellow passengers. It’s difficult, because when I think of some of the things my friends have overcome, I want to scream THAT’S JUST NOT FAIR! No one, friend or foe, should have to endure the things we put up with. If you are a regular reader of this blog you know of the various procedures and surgeries I have had. Some of them hurt. But nothing hurts like the pain of seeing your healthy friends do things and knowing that you have to say “I can’t.” That, in a nutshell, is the reason I came – to get rid of those two words.

But as I leave, I’m taking a camera full of photographs and wonderful memories. I saw my friend Heather Magee; she flew in for the event and seems to be doing well. A friend who is 60+ years old and had her first operation in the late 1940’s. She went in for a procedure just two years ago, came through with flying colors and said it was “just a tune up.” She walked the entire Bolder Boulder course! A doctor who has fought both his heart defect and cancer, and won. A young lady with Hypoplastic Left Heart Syndrome (HLHS) who is in her early 20’s. And my “boss”, the organizer of the ACHA Bolder Boulder team. I can’t – and I won’t – forget these people.

I do not like to say goodbye, but I must leave Boulder and these wonderful friends. I’m a long way from home; and it is always possible that my travels may never bring me back here. But I’m taking your spirit, your never give up attitude, and your friendship home with me.You have my friendship in return.

And I’ll see each of you somewhere down the road, hopefully soon.

The air up there

May 21, 2009

Now comes the hard part – packing! I’ll certainly get that “I’m forgetting something!” feeling, I think we all do. But I don’t have to worry about my oxygen, it’ll be delivered to my hotel!

I normally sleep with an oxygen cannula in my nose. It was originally prescribed because my Hemoglobin was so high that I was having to have a Phlebotomy – a planned, controlled bleeding – once a month. The high Hemoglobin is caused by  my heart defect: since I’m Cyanotic, my body tries to compensate for the lack of oxygen by producing more of the oxygen carrying molecules in my blood. The body has several little tricks it uses to try to compensate for its own failures!

You can get a Phlebotomy done at the local American Red Cross center with no problem, it’s the same procedure as if you were donating blood. But since the Red Cross can’t use your blood (With that high Hemoglobin reading, they have to discard it) you get charged for their services. It’s been at least ten years since I had to have a Phlebotomy, and back then the charge was $50. Who knows what it could cost now!

When I first started the oxygen therapy, I had to spend a night in the hospital wearing the O2 and a Pulse Oximeter to record my blood oxygen levels. That was probably the easiest hospital stay I have ever had! Just sleep with the cannula in my nose and the little clip on my finger, and no worries about someone coming in the next morning and saying “Your tests results are not what we hoped for…”

I asked the doctor how long it would be before he could tell if the oxygen was working – I expected his answer to be a couple of weeks, or perhaps six months – but he said “Eleven minutes.” Your body starts responding to oxygen therapy almost instantly, but when blood leaves the heart, it takes eleven minutes for that same drop of blood to make one complete circuit of the  the body. Cool, I didn’t know that!

So fast forward to a few months ago, when my doctor said it would probably be beneficial for me to have my oxygen while on the Colorado trip. Usually I don’t have to carry it with me; I’ve never had a problem if I go on a trip and miss a couple of nights. But the surrounding air is going to be thinner than I am used to, so he thought it would be a good idea this time.

For a while I thought I was going to have to figure out how to ship a sixty pound Oxygen Concentrator from my home to Boulder! At least the thing is on wheels, so I wouldn’t have to carry it… much! But thankfully my oxygen Supplier, Apria Healthcare, has a program that can match you with a unit if you travel. I have to give a shout out to them; the O2 will be delivered to the hotel by their local office before I get there, and picked up again right after I leave!

Until next time!

On the Trail

May 19, 2009

The starting lineup for the 2009 Bolder Boulder is set – nine adults who have had  sixteen major heart operations will be participating. We’ve got nothing to prove: I jokingly say that when I wake up in the morning, I stretch my feet forward and look at my toes. If there is no toe tag… I’m still winning!

I’ve talked a lot about the race, but I’m having a hard time putting into words exactly what this means to me. Certainly it’s going to be a lot of fun – I met a some of the Denver area Adult Congenital Heart Association (ACHA) members while I was in Philadelphia and in Washington, DC; they are good people. And we all have a common story, we’ve all Walked the Difficult Path. When I talk about my heart with these people, they automatically understand. If the air is thinner than I’m ready to deal with and I need to take a break, I don’t have to feel guilty about begging off for a little while. I won’t feel left out, because every one of us has Been There and Done That at one time or another.

I’ve run into several “technical difficulties” getting organized for the trip. My Cardiologist prescribed a little extra Oxygen for me while I was out there, and for a while I thought I was going to have to ship a 60 pound Oxygen Concentrator cross country! The local group was right there with offers to handle things on that end. (I’ve been able to arrange to have it delivered to the hotel, so no hearts or backs were damaged in the making of this trip!) A few weeks ago when my hernia was really giving me a fit, I emailed the local ACHA organizer that I might not be able to come after all. Almost immediately I was told that if I could get there, I’d be loaned a wheelchair and an assistant to push me around. That’s going above and beyond! Thankfully the hernia is quiet and if all goes well, I’ll be able to be on my own two feet. But the offer was greatly appreciated, and as far as I know it still stands. I’m sure I’ve been a pain in the rear end trying to work out the details, but the Denver crew has been patient, and I am so thankful for them.

Like the team that is actually on the course, I’m fortunate enough to be in pretty good health. Other adults with heart defects are not. Heart Moms and Heart Dads look at their Cardiac Kids and wonder what the future will bring. A lot of things have changed since I had my surgeries, I’m hopeful that they will have an easier journey than my parents did. And perhaps one day, with more knowledge and funding, no one will have to walk this path at all.

And that is why we’ll be out there. Because every heart deserves to live a lifetime.

Until we speak again;

The Bolder Boulder Soundtrack!

May 17, 2009

The soundtrack can make or break a film – after all, what do you think of whenever someone mentions the old TV show Dragnet? Almost everyone thinks of that four note opening theme: DUM DA DUM DUM! Everyone knows the Star Wars theme – and even though you may not know the title, you’re probably familiar with the Imperial March, the heavy bass tune that is played whenever the Empire is on the move. That song lets you know that the bad guys are again up to no good, and that Darth Vader is certain to be involved!

The Bolder Boulder also has a soundtrack! This is really pretty cool – all along the six mile course, local entertainers will be performing, keeping both the crowd and the participants pumped up. Crowd support can keep a runner motivated – during the 1996 Women’s Olympic Marathon Trials in Columbia, South Carolina, part of the course passed through Fort Jackson. Many of the runners said that the sight of hundreds of US Army trainees cheering for them really helped them keep going!

The Bolder Boulder soundtrack is available – FREE! Just click this link, you’ll be taken to a page where you can order a CD containing music from most of the entertainers for the outstanding price of $0.00! (I don’t know if there is a shipping and handling charge, but the CD itself is free!) Plug it into your CD player as you work out and see if you don’t work a little harder!

The Adult Congenital Heart Association (ACHA) participants are going to be enjoying the music too, but if you really want to get us fired up, stand up and show you’re with us. If you see an ACHA participant go by during the race, shout long and loud! Send us an e-mail at MetroDenverACHA@achaheart.org asking how you can get involved. Consider making a donation to the ACHA (We’re a nationally recognized nonprofit organization!). Give us a yell if you see an ACHA member in downtown Boulder. Or, join the ACHA. Like the Bolder Boulder soundtrack, ACHA membership is free!

’till next time;

Running for our Lives

May 12, 2009

As previously mentioned, I’ll be in Boulder, Colorado for a few days to support my friends in the Denver Metro Chapter of the Adult Congenital Heart Association (ACHA). They’ll be participating in the Bolder Boulder, a 10 Kilometer (slightly over six miles) road race through the streets of Boulder. We’ll raise money for the ACHA and awareness of Congenital Heart Defect (CHD) survivors. I’m not participating in the race because of my low PulseOx readings, but if I were on the course, I’d be crazy enough to wear a T-Shirt with these words printed on the back:

YOU ARE LOSING TO SOMEONE WHO HAS A HEART DEFECT!

But that probably wouldn’t make us any friends and with my luck, I’d finish last!

Last year, Denver Metro was able to field a team that included seven adults with heart defects, and between them they had undergone twelve heart surgeries. Friends, family and neighbors of the twelve survivors were right out there with them. And there were more Funky Hearts who didn’t participate but were cheering from the sidelines.

More and more children born with a heart defect are growing up; a report from the Bristol Royal Hospital for Children estimates that 1,600 British children with bad hearts become adults each year. Doctors are learning how to control arrhythmia in adults better, and the medical community is beginning to recognize that Adult Congenital Cardiac patients need lifelong care, though for years many of us were “lost in the system.”

If you are in the Boulder area over the Memorial Day weekend, keep your eyes open for ACHA T-shirts, and give us a shout out when you see one! We’ll give a shout right back at ya! We hope to have an awareness table, but I can’t tell you where – we won’t know for certain until the events for the week are finalized. But if you see it, stop by and meet the team!

And maybe you are a Funky Heart who’d like to be part of a national organization that works for you, full of people who have been right where you are. You don’t have to live in the Denver/Boulder area; just click HERE to become a member of the Adult Congenital Heart Association. Membership is free, and the benefits are priceless!

Why We Fight

May 8, 2009

There’s no doubt about it, I’m blessed. Other than my hernia (Which has not hurt very much in the last week, thankfully!) I am in pretty good health. I can come and go as I please. I walk every morning, do my exercises, walk my steps and generally try to keep myself going.

Others are not as lucky as I am, through no fault of their own. Paul Cardall has Tricuspid Atresia, the same defect I have. I’m active, Paul is on oxygen and on the list for a heart transplant. But we could easily share the same fate. (If you’re looking for good music, check out Paul. Not only is he a fellow Heart Warrior, he is an awesome pianist!)

Elyana Twiggs describes her heart surgery in an article for The Daily Michigan; she was 15 years old at the time. She was like any child in that situation – scared to death and in great pain.

And then there are little guys like Colby, nine months old and already a member of the “Zipper Club”. And Lucas, the newest member of our blogroll. His first ride wasn’t in dad’s car heading for home, it was  in a helicopter going hell for leather to a hospital.

Paul and Elyana, Lucas and Colby. That’s why we fight; that’s why I’m heading to Colorado to participate in the Bolder Boulder with other members of the Adult Congenital Heart Association.

To stand up for those who can’t.

We’re moving on up!

May 5, 2009

Here’s an interesting research topic: A team of climbers and scientists climbed Mount Everest, and on the way up (and back down) they took Arterial Blood Gas readings from each other. As you may know, Mount Everest, the highest peak in the world, is 29,029 feet above sea level. That’s about five and a half miles up!

As they climbed and the air became thinner, the Partial Pressure of Oxygen readings in the sample dropped. However, the amount of Hemoglobin in the blood increased – our bodies can compensate to take care of itself! The readings showed that the extra hemoglobin was able to keep the body thinking that it was functioning at lower altitudes until the climbers reached 23,300 feet. After than, the air was too thin for the extra Hemoglobin to help.

When the group from Denver came to Philadelphia for the Adult Congenital Heart Association (ACHA) convention last year, they found out that this theory was true. Living in a city more than one mile above sea level had caused them to develop extra Hemoglobin molecules in their blood – not much, and certainly not outside of the acceptable ranges – but it was there. And when a couple of them decided to work out, they nearly ran the wheels off of the Fitness Center’s treadmills! The thicker air and that extra hemoglobin combined to give them an energy boost.

When I go to Boulder – which is a little higher than Denver – I fear that it is going to work in reverse for me. My blood oxygen is already at 80%, at rest, moving up in altitude will cause it to drop. That is one of the main reasons I’m not participating in the Bolder Boulder: I’m not used to the altitude, and I won’t have a chance to become acclimated enough to participate.

So I’m working hard now, walking every day and doing stair climbing exercises, and I’m going to take it easy in Colorado  – use my PulseOx a little more often than usual, chill out, and don’t get a burr under my saddle and decide I’m gonna whip that six mile course anyway. I have supplemental oxygen in the hotel room, just in case.

And my friends are all Funky Hearts too, so if I start falling apart at the seams, they’ll recognize the signs and come to my rescue!