Archive for the ‘Exercise’ Category

A Weighty Matter

November 17, 2010

Some not so wonderful news to report: Children with Congenital Heart Disease (CHD) are more and more overweight.

That’s not good. While Cardiac Kids may be slow to add weight when they are young, most of us “catch up” later. We may be a little bit thin, but our weight is acceptable. But this study contends that once we catch up, we keep going! The reasons are many and varied, and usually just as applicable to Heart-Healthy kids: video games, fast food… you’ve heard all this before, I am sure.

But CHDers need to keep their weight under control. (…says the Funky Heart, who could stand to lose a few more pounds himself.) Every extra pound we carry means that our hearts have to work harder to pump blood through our body. That may not be a problem for the average kid, but our hearts are already bruised and beaten up; they have been cut apart and stitched back together again.  We need to make it as easy on them as possible.

So how much should you weigh? The research article cited above mentions the Body Mass Index (BMI) as one of its comparison tools.  The BMI is OK for use as a comparison, but don’t use it as your source for your proper weight. Ask your Cardiologist for advice about a good weight range to stay in. Many people contend that the formula used to calculate your BMI number is flawed. You have to wonder if they may not be on to something, since according to their BMI numbers, former President George W. Bush is a fatso and actor Tom Cruise (five foot, seven inches tall; 160 pounds) is plump.

So find out what your healthy weight range is, and do what you can to keep it there. Be sure to discuss any exercise plan with your doctor first – overdoing it and damaging your heart while you are trying to take care of yourself defeats the entire purpose, after all. Go outside and play; don’t think about exercising, just go have fun. Take a walk through the neighborhood, at your own pace. Get FitDeck Exercise Playing Cards. FitDeck Junior is great for Cardiac Kids, providing that their Cardiologist gives their approval. It’s all fun and games… but they are really exercising! (Shhhh! Don’t tell ’em the secret!)

I often remind my readers that CHDers are living longer and better lives as modern medicine develops new ways to overcome our Heart Defect. But it doesn’t “just happen”, we have to contribute to our own well-being.

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Balance

November 14, 2010

My Congestive Heart Failure (CHF) is worse.

I think the problem is correctable. When I was having the Gout flare-ups a few months ago, my Cardiologist took me off of one of my Diuretics. One of the side effects is that it can cause Gout, and I haven’t had very many problems with the Gout since.

But recently I’ve noticed swelling in my ankles, a constant cough, and I feel run down most of the time. So I asked my Cardiologist for permission to start taking that drug again… every other day. That ought to be frequently enough to help me, without causing the Gout.

With a heart defect everything seems to be a balancing act. We discontinued the drug to keep the Gout at bay, but it seems that I’m feeling worse. So I’m taking it again – at half the dosage I was originally taking it. So if my self-diagnosis is correct and resuming the drug will straighten me out, it will take twice as long for it to work (since I’m taking half the dose). If it doesn’t seem to be the solution, I’ll have to talk to my Cardiologist again, and we’ll have to figure out a Plan B. And there is always that thought in the back of your mind: What if Plan B doesn’t work? Plan C might, but even if it works wonderfully, that’s one more option off the table.

Stay hydrated… but with your CHF, don’t drink more than 2000 millilitres (2 liters, or 67 US liquid ounces) per day. Normally that’s more than enough to drink, but what if I pick up a stomach bug that keeps me in the bathroom constantly? Then you can break the 2000 ML rule – but be careful! We don’t want to start having too much fluid in you. You also need to limit your salt intake to no more than 2000 milligrams per day. But when you get that stomach bug, Oral Rehydration will help tremendously… and Oral Rehydration is mainly (you guessed it!) water mixed with sugar and salt.

The goal is to try to keep everything in balance, to give your medications the best opportunity to help your body. If your doctor says to exercise, do so. (I’m one to talk! I have walked very little since hurting my knees in my July fall.) Don’t just fill a new prescription, question the doctor about the medication. What is it supposed to do? How will it help me? And what side effects should I look out for?

And be sure to ask the most important question: What can I do to help myself?

Got what you need?

November 2, 2010

They had two walking routes at the Atlanta Heart Walk: a 6 Kilometer (3.7 mile) route and a 1 mile “Survivor’s Walk”. Several times, one of the other Adult CHDers stated that she was going on the Survivor’s Walk. Then suddenly she was looking for Dr. McConnell. “What would you think if I tried the long walk?”

“Do you feel up to it?” he asked.

She nodded. “I’ll do the three and a half mile walk if you’ll walk it with me.”

“I’m game,” Dr. McConnell said, and they moved off to the area where people were gathering for the longer walk.

I left not long after the walkers started – it was cold, and I am Cyanotic. A couple of my friends had the telltale blue tinge, and I am sure I resembled a grape! With me changing colors and shivering in my shoes, and 60% of the attendees out on the Walk, it seemed the perfect time to take off. But I had to laugh at the “preparations” we make before going on a 3.5 mile hike:

Got your water bottle? Check!

Wearing comfortable shoes? Check!

Got your Cardiologist? CHECK!

Epilogue: The walk went really well, and no one – Heart Warrior or doctor – suffered any ill effects!

South Bound and Down!

October 25, 2010

To the tune of East Bound and Down by Jerry Reed:

 

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

Now keep your foot hard on the pedal, son never mind them brakes
Let it all hang out ’cause we’ve got a walk to make
We were summoned to Atlanta, where Heart Warriors will gather
And we’ll be there no matter what it takes!

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

Heart defects have too much power, it affects five kids an hour
And it ain’t gonna rest until we fail
So we gotta dodge it, we gotta duck it
We gotta do our part to stop it
So put those walking shoes on and give it hell!

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

 

THE ATLANTA HEART WALK

8:00 AM October 30, 2010

Turner Field

Atlanta, Georgia

Off the page

October 10, 2010

Have you seen the newest Facebook craze? It’s a quick little game named “Find out how long you have left!” Answer a few simple questions and you get something like this:

John Doe has 42 years, 106 days, and 19 hours left. ENJOY!

*Snort* Yeah, right. There are way too many variables that have to be considered to make an accurate lifespan prediction. And what happens if you accidentally step in front of a moving bus?

John Doe has 0 years, 0 days, 0 hours, and 3 seconds left. ENJOY!

That could ruin your whole day!

My Atlanta Cardiologist was out-of-town during one of my appointments, so I was being seen by his partner. I don’t mind that a bit – she’s playing at the top of her game, too. It had been on my mind for a while, so I asked her THE QUESTION: Doc, how long do you think I’ll be around?

She rolled her eyes. “We’re pretty much off the page already! But as well as you are doing, if you keep taking care of yourself you should live a good long time.”

The key point, of course, is taking care of yourself. That can be applied to the heart healthy as well as the average CHDer. Keep your butt planted on the couch, you’ll wither away. Get up, get out, keep moving and doing things, you’ll last longer. There were two gentlemen in my community who retired about the same time. One came home, planted a garden, did some home improvement projects he had been meaning to get to, stayed active and lived for 15 years. The other one moved a comfy chair onto the porch, put his feet up on the porch rail and watched the world go by…. and was dead inside of two years. The moral of this story is obvious: If you want to live, tear down your porch rail and sell your chairs!

It’s not that hard to stay active. You really don’t even have to think about it. Take the steps instead of the elevator. Or you’re like me and you despise steps. What then? Simple… park at the far end of the parking lot. That little stroll will do you good, and it adds up, too. Have good friends – not the kind that have more drama than the local picture show. In a true friendship there are going to be hard times, of course, and you’ll be there for each other. But if your friend has so much drama in their life that they could export it to China…. you can do better. Keeping your nerves on edge is hard on your system.

Don’t take a shovel with you to the dinner table, you don’t need to eat that much. Eat good foods. I’m one to talk, I’ve been a junk food junkie all my life, but I am always working on it! Being put on a low sodium diet to prevent my heart from taking the day off is a hell of a convincer! A good rule of thumb is foods ending in with an OH! sound usually aren’t good for you. Doh-reet-OH!, Cheet-OH!… you don’t need those very often. About the only exception is the Cheer-e-OH!

Do the little things to take care of yourself. Fasten your seatbelt, and don’t drive like Mario Andretti. Even Mario keeps his speed under 200 Miles Per Hour when he’s on the public highways!

As I often say, Every heart deserves to live a lifetime. But you have to do your part, too.

The Long Walk

June 16, 2010

“Improvise, adapt, and overcome.” – Heartbreak Ridge (1986)

Heart parents are understandably worried about their Cardiac Kid’s activity level. It’s a balancing act – we know that exercise and activity can help strengthen a weak heart, but how much is too much? And couldn’t something bad happen if he pushed him/herself too hard?

A 1997 research report concluded that parents worry about their children who have a Congenital Heart Defect (CHD). The study identified seven specific concerns but was unable to determine if these were specific to parents of CHD kids. The study was very limited – only eight parents participated – and drew no conclusions.

Sort of leaves you wondering. One of the major questions on my parents mind was my activity level, and what I could do physically. I think they were finally convinced by a Pediatrician who told them that he really had no idea what my limits were. “But I do know that when he gets tired, he’ll stop and rest,” he said. “I’ve seen thousands of children do that.” And…. he was right. No matter how much fun I was having, when I got tired, I’d quit and rest, and rejoin the game later. It all happened naturally, no one had to teach me how to do that.

One problem CHD kids can have is a lack of self-efficacy (in other words, we sometimes don’t believe we can accomplish a goal.) And honestly, sometimes we can’t – not in the normal, accepted way. This is where we have to convince ourselves that “there’s more than one way to skin a cat!” As a fellow Heart Warrior said in an interview published on this blog:

“…its about having the self-confidence to find another way when you reach a roadblock.”

And we all get a case of  “I don’t want to!” at one time or another. I know that walking is good for me, but I also know that walking in cold weather is going to cause my joints to hurt. I’ve got on thermals, coats, gloves, a scarf, and a heavy sweater; I’ve tried hand warmers and foot warmers (both thermal and electric) but it still happens – probably because of my cyanosis and/or my bloodthinners. My hands are going to ache; the joints of my fingers are going to hurt so much that they feel like dead weights until I get back inside and warm them. So in the winter months you can’t pry me out of the house and I wonder how the CHDers I know who live in cold areas survive.

This report outlines some exercise and physical activity guidelines for CHDers.  Even though those of us with a univentricular heart (a cool phrase for someone with one working ventricle, like my Tricuspid Atresia) have a reduced exercise tolerance, physical activity can help us, too. We just need to make sure that we don’t overdo it. And recent studies show that physical activity usually doesn’t trigger an ICD shock.

So the bottom line, Mom and Dad, is don’t become Helicopter parents and “hover” all the time. And for us CHDers, it’s probably OK to get out and exercise or play. Naturally, check with your doctor first.

And for me, to get up the enthusiasm to get out in the cold!




The Other Side of the Coin

April 7, 2010

Despite the fact that the overall time doctors and patients spend discussing medication is going down, there are still doctors out there that will go to bat for their patients. When you find one, grab on and don’t let go… an intelligent, proactive patient coupled with a doctor who goes above and beyond the call of duty are hard to beat!

That’s one reason I love my Adult Congenital Cardiologist and his team at Emory University Hospital. There have been some changes recently that make it a little harder to get in touch with them than in the past, but these all seem to be because more and more patients are being seen. (That’s great news! More and more of us CHDers are hanging around!) But they will get back in touch with you, especially if it seems that a problem is developing. I’ve had the Nurse practitioner that works with my doc to call me at 8:00 PM at night – say, don’t you people ever go home?!?!

Laurie Edwards knows just how important it is to have a doctor who is on your side, and she give us a good example – not by bragging on a good doctor, but by showing us the exact opposite. In this case, Laurie has to hold her tongue while a friend lives the nightmare.

The Professional Patient has a good post titled Accepting that you might be like this forever. “Congenital” means occurring at birth, so someone with any kind of congenital problem needs to drop the word “might” from that statement. Even if you have a corrective procedure, you’ll probably have residual effects and need to be monitored all your life. A doctor/advocate can help you not only with your general health and medications, he can go to bat for you when questions arise about your health status. For example, try to apply for any kind of medical coverage with a pre-existing condition! Even if you are successful, there are going to be forms to fill out and examinations, and someone is going to want to look at your medical records. It is going to be a pain in the *ahem* – but having a medical professional who will handle their part of the paperwork quickly and efficiently will make the road a little smoother.

When you find a good doctor – grab him and don’t let go!

Ask Questions!

April 6, 2010

Here’s a scary report, courtesy of Kevin, MD: Patients don’t ask questions of their doctors.

While there are a precious few patients who are totally involved in their health care, the vast majority just take their doctor’s advice at face value. A 2008 study found that when 181 people were prescribed a new medication, they asked a total of 199 questions (or made a comment) about the new drug. That’s an average of 1.09 questions/comments per patient!

What’s worse, the same study showed that the doctors didn’t talk, either. The average office visit was 15.9 minutes, and the patient and doctor spent an average of 49 seconds discussing the medication. The length of discussion ranged from a high of 351 seconds (5.85 minutes) to an amazing 1.9 seconds! (What can you say in 1.9 seconds?!?!)

As noted before, patients who are more involved in their own health care ask more questions. That’s you. Having a Congenital Heart Defect means that you are, for all intents and purposes, a patient pool of ONE. Others may have the same defect that you do, but no CHD ever treats its owner like everyone else.

As I’ve written before, I have a hernia. It’s usually well-behaved, but occasionally it will get pretty angry with me. A hernia repair is a fairly simple operation these days, and usually doesn’t even require an overnight stay… except for me. My Cardiologist does not want to authorize the operation, instead asking me to just fight through the bad times by prescribing couch time and TV. “I could spend a day explaining your anatomy to the surgical team,” he has said. “And they still wouldn’t understand it.” It’s not that he can’t, my doc has a couple of teaching awards to his credit. I’m complicated.

So if you don’t know what’s going on with your body, it is time to learn. And ask questions – what is this medicine supposed to do? What are some of the side effects? What do you think would happen if I decided not to take this drug? Are there any other options available? All of these are legitimate questions – and if your doctor gives you an answer in 1.9 seconds, ask another question. You can control how long he talks to you. Conversely, you can find a doctor who will spend the time needed to help you make a good decision.

It’s your body, and the medical decisions you make affect you, and rarely anyone else.

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