Posts Tagged ‘Ventricular Septal Defect’

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.

New Catheter patch for VSD repairs!

April 17, 2009

Here’s something new and very cool… a Ventricular Septal Defect (VSD) patch that can be inserted via Catheter! It’s been in use in Europe and has just been approved for use by the FDA.

Fixing a VSD through Catheterization is difficult, to say the least. Entry to the heart is through the blood vessels, and normally all the blood vessels connect to the upper chambers of the heart, the Left and Right Atrium. Once inside an Atrium, the Catheter has to very gently be threaded through a heart valve into the Ventricle. Then the VSD must be located, the  Catheter moved to the correct location, and the patch inserted.

And no sudden moves please… unless you want to damage that heart valve! Most patients (and their doctors) would prefer that  you didn’t!

It doesn’t have to be this way

March 30, 2009

There is a new report being presented at the American College of Cardiology meeting in Orlando today. You could conclude that this report is disturbing, but I want to dispute it. No, I am not saying that the report is incorrect, but that you don’t have to be “trapped” by the results.

This report contends that even though Congenital Heart Surgery techniques save a child’s life, their quality of life may not improve. The full text of the press release is here. Since the full report is not available at the moment, let’s look at a few points in the press release:

“Advanced treatments often result in unintended complications, particularly when combined with the hemodynamic impact of the heart defect itself,” says Bradley Marino, MD, a cardiologist from the Heart Institute at Cincinnati Children’s Hospital Medical Center and the study’s lead author. “The child’s neurodevelopmental, psychosocial, and physical functioning are all impacted by these complications, and they may adversely affect the child’s quality of life. If we know the predictors, we can put interventions in place to change the outcome for them.”

I actually agree with and support what they are trying to do. As we all know, even though two children may have the same heart defect, the physical effects can be vastly different based on the severity of the defect. Two people, for example, can have a Ventricular Septal Defect (VSD), yet one can be affected by it much more than the other due to how big the VSD is and where in the heart wall it is located.

To measure how much of an effect these factors have on children, Dr. Marino and his team developed the Pediatric Cardiac Quality of Life Inventory (PCQLI), a self-administered questionnaire that quantitatively assesses health-related quality of life in children and adolescents age 8-18 years, and their parents. The questions are designed so that anyone with a third grade reading level can understand and answer them in fewer than 10 minutes.

Dr. Marino and his colleagues recruited 759 pairs of patients and their parents. The patients were between the ages of 8 and 18 and had at least one prior cardiac surgical procedure. The researchers evaluated the effect of income, socioeconomic status, recent hospitalization, Fontan palliation (a surgical approach to treating hearts with one ventricle), and a greater number of doctor visits in the past year.

The Quality of Life Inventory seems to be a list of simple questions that 759 patients and their families answered. “Fontan palliation” means that the patient only has one ventricle, so this would put patients with Hypoplastic Left Heart Syndrome (HLHS) and defects that affect the right ventricle – like Tricuspid Atresia – on the study list. So I would be considered for this study. Also, it seems that there are very few factors being studied that the patient can affect. Number of doctor visits could be affected by both income and socioeconomic status, as a family with fewer resources could be more likely to skip a doctor’s appointment.

Modifiable factors associated with lower quality of life scores among patients after surgery included recent hospitalizations and greater number of doctor visits. Non-modifiable factors included Fontan palliation and both lower income and socioeconomic status.

The study takes this into account – you can get more or fewer “points” based on hospitalizations and doctors visits. But a lower income, a lower socioeconomic status, AND having only one operational ventricle are automatic deductions.

So I get points off for only having one working ventricle. The study is right, this IS a limiting factor. But the study is also wrong… I have met a lot of Tricuspids and HLHS survivors who are full of life. Two women I met at the Adult Congenital Heart Association (ACHA) convention in Philadelphia both have Tricuspid Atresia, both of them are full of love for life and have a full schedule. One of them is engaged! I love them both like sisters – I’ve said before that my cousin is the sister I never had, but now I have THREE sisters!

I also met Rose, a young lady with HLHS who was looking into an uncertain future, because she is among the oldest HLHS survivors alive and no one can predict what might happen to her in the future. So Rose had brought her heart-healthy fiance to the convention: If he was going to put a ring on her finger, he needed to know what the score was! (You go, Rose!)

Do not get me wrong – living with a heart defect, especially one that leaves the patient with one ventricle, can be difficult. You have to adapt an attitude that you are going to take care of yourself, and be disciplined enough to know that there are things you can’t do and things you shouldn’t eat, and stay away from them. It is difficult to find a child with this attitude – that kind of self control only comes with age and experience. Even now, I “misbehave” occasionally.

So don’t let this study turn you into a “woe is me!” person, or make you into an overprotective parent. Your quality of life is determined by what you do, and how much effort you put into it.