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HeartSense Helpathon: Fourth in a Series

I noticed on Twitter that Liz Scherer mentioned time and again that she was at the gym for her workout, even going in bad weather.  So I asked her to write about why and how she exercises for good health. Turns out she is even more dedicated than I thought.  Below is the guest post of a very determined woman who makes time for exercise daily because it is important.  In previous guest posts, Jody Schoger inspired us with her passion for walking and cycling and Brian Mossop dazzled us with Why I Run.  Here Liz Scherer tells about her gym workout and explains that she just has to move every day.  Maybe something she inherited from her very active mom and dad? Are you like Liz or do you marvel at her story?                                  

Move it or lose it: confessions of a junkie    

Here’s a little-known fact, even amongst my inner circle: I’m a junkie. And when I don’t get my daily fix, I lose my momentum, my emotional balance, my focus, my everything. 

As an aging, perimenopausal woman and a health writer/journalist, I’m well aware of the benefits of regular physical activity, including:

Significant improvements in metabolic and cardiovascular capacity 

Reductions in breast cancer risk, especially during menopause

Maintenance of normal weight as the metabolism slows

Better balance to counter bone loss, and along the same line, preservation of bone as estrogen begins to wane.

However, these benefits aside, it’s also personal; my activity regimen helps to keep the blues and life stressors at bay or, at the very least, temper them. Moreover, as an individual who’s been plagued with back and other joint issues most of her life, I know that movement keeps me upright.

HeartSense Helpathon

Here’s another confession:

It’s in the genes.

I have yet to see any data that demonstrate that interest in exercise and physical activity is genetically based. Hence, as an “n=1” example, I’d like to offer the following hypothesis:

The need/desire to exercise is hard-wired at birth.

If true, this would provide a rationale for why I went from the gateway of jungle gyms to the harder stuff: gym workouts, running, biking, hiking, and walking miles and miles and miles all over Manhattan. It would also explain why exercise doesn’t simply keep me alive and healthy, but it makes me feel vibrant and powerful. Moreover, every cell in my body craves it when I stay away for too long.

Physical activity. It’s my family’s genetic pool. Say what you will but one of the most vivid memories I have of my grandmother is her single-handedly moving a piece of furniture in her apartment, a piece that was at least twice her size and almost equivalent to her weight, and at the age of 87, no less.

My parents, currently 84 and 79, are also addicted. Back in the 70s, it was running and tennis; today, it’s horseback riding, exercise class, half-court basketball, tennis and golf, minutes on the BOSU, Qigong, you name it.  

For me, my routine is as varied as my interests. However, there are two constants:

A minimum of 50 minutes of cardio/aerobic activity daily.  Recent data suggest that women need a minimum of 55 minutes daily of moderate-intensity physical activity to maintain daily weight. I work out at a gym where I rely on a combination of the recumbent bike, elliptical, rowing machine, or walking backward on the treadmill. Not only is my aim to maintain a target heart rate but I also want to ensure that I am hitting both lower and upper body areas during the course of my daily workout. In addition to metabolic boost, the goal is multifold: cardiovascular/aerobic conditioning, upper and lower body strengthening, and core conditioning, all of which keep me healthy and upright. Of note, rowing has been a recent addition for me; not only does it work out my entire body, but it’s incredibly meditative and hence a stress buster and creativity enhancer.

An every-other-day weight/machine regimen as an add-on to aerobic activity. Due to time constraints, I tend to focus on either the lower or upper body on these days but ensure that I get both into my week. Of note, workouts should be individualized and take into account physical limitations, age, and overall health. My workouts were developed by a trainer who understands the challenges of an aging body in conjunction with my physical therapist, who is also a physiologist and is responsible for helping me to eliminate much of the joint and back pain I am prone towards. Specifically, my weight/machine regimen is designed to strengthen my core, develop my upper back/shoulder strength and combat the middle-aged bulge that accompanies waning hormone levels in women. It includes free weights, the use of resistance bands, and Free Motion Cross-Cable machines that allow a customized program and smoother resistance. Importantly, I focus less on the overall weight I’m using for each machine and more on repetitions; this helps me to achieve fitness goals without overtaxing any area of my body. 

Whether you’re 25 or 35, 50, 70, or older, do yourself a favor: move. Physical activity is an addiction that’s not only good for you, it’s also bound to make you feel good and can help keep you feeling good for the rest of your life. The one rule of thumb is to make sure that your healthcare practitioner supports whatever physical activity that you decide to engage in and that you work with a knowledgeable team of trainers and physiologists who can individualize programs.

Yes, I am a junkie and I come from a long line of junkies. I don’t need a pusher because I push myself every single day.  Kick the habit? Not a chance!

Heart Sense Helpathon: Third in a Series

Exercising Basics: Getting Started  

In the previous two guest posts on exercise, Jody Schoger and Brian Mossop inspired us with their stories of building and sustaining a rigorous exercise program.  Both promised that if you exercise regularly, you will never want to go back to being a couch potato. Exercise makes you feel better and has many health benefits.  For those of us who have experienced heart failure, the main reasons to exercise are to strengthen our hearts and the muscles in our legs, arms, and core of our bodies.

But the idea of walking, running, or biking for miles if you are unsteady on your feet or still get fatigued easily, may seem out of the question.  So let’s talk about how to get started and what types of exercise to do.  Please be sure to get your doctor’s approval before you begin exercising.  Much of the following is excerpted from Chapter 13 “Exercise:  How Much and What Kind” in Living Well with Heart Failure, the Misnamed, Misunderstood Condition the book I co-authored with Edward K. Kasper MD.  While the entire book was a collaboration, the exercise chapter was one I researched and wrote and the main references are listed below.  

If you are not already exercising regularly, why not start today.  Let’s make 2011 a year we build our strength and fitness.

Why Exercise?

To keep from turning into a statue; gain more freedom of movement; ease your heart’s workload; strengthen your core body, legs, arms, heart, and lungs; and become more active.  The main symptom of heart failure is an inability to exercise for long, or even do normal activities such as walking or bathing without feeling fatigued or short of breath.  Heart failure doesn’t just affect your heart.  It also affects many of the muscles in your body, and muscle weakness is often most noticeable in your legs. 

At least three things contribute to your muscle weakness:  As your heart labors to send oxygen to your body, your skeletal muscles receive less oxygen, certain damaging chemical changes occur, and using the muscles makes them tire easily.  Your symptoms of heart failure – your general fatigue, shortness of breath, and muscle fatigue —  often lead to your becoming less active.    Randy Rocha, strength and conditioning coach who has worked with me, explains that with inactivity, as can happen when people first develop heart failure or have moderate to severe heart failure,  muscle tightening and muscle atrophy set in.  “You atrophy so much that you don’t have the strength to get from Point A to Point B,” he says. “Not only is everything atrophying, everything’s tightening up and it’s slowly getting tighter and tighter.”  Then when you try to get up from a chair or off the toilet or walk upstairs or even walk on a flat surface, your shrunken muscles can’t meet the demands you ask of them.  So you may find yourself hobbling along, stopping to rest your hands on the back of a chair, or leaning against a wall.  Not the shape you want to be in?  Regular stretching and strengthening exercises will help you get up more naturally and walk more normally with better posture for longer periods. 

Heart Sense Helpathon

Most heart failure occurs in people who are over 55 and so, aside from your heart failure, you also may have gotten out of shape, overweight, and have some arthritis, diabetes, COVID, or other medical problems.  Now it has become very important for heart patients to test themself regularly against COVID, this can be done at home with the use of the rapid test, learn more about the rapid tests at https://clinicalsupplies.com.au/collections/rapid-antigen-tests

I was fortunate enough to get through my bout with heart failure and come out with a heart that is working normally.  But separately from heart failure, I’ve developed a neuromuscular problem that makes walking challenging.  Like me, you may have multiple reasons to exercise. When you plan your exercise routine, treat your heart failure, but also take care of your whole body’s needs.  Besides gaining the ability to be more active and do more things, benefits from exercising include lower blood pressure and improved ability of the blood vessels to expand and contract.

Types of Exercise

If your doctor says you are healthy enough to exercise and have no particular exercise restrictions, choose a combination of these four types of exercise:

1.  Stretching exercises will isolate individual muscles, lengthen them, and keep them and your joints flexible.

2.  Aerobic exercise, also called cardiovascular exercise, such as biking, walking, or running will build the heart’s endurance and improve muscle function in your legs and arms, depending on the exercise you do. 

3.  If you are strong enough, balance exercises such as standing on a balance board or wobble board will improve your body’s awareness in space.  

4.  Resistance exercises or strength training can strengthen muscles throughout your body, increase muscle endurance, and improve balance and posture.  Increasing muscle endurance can increase the body’s ability to burn fat throughout the day.

We will discuss stretching, aerobic, and balance exercises in this post and save resistance exercises for the next one because there is much to understand about how to safely do resistance exercises.

If you still have an active heart condition, the safest and most effective way to start your exercise program is to learn exactly what to do at a cardiovascular rehabilitation program or exercise center.  If your heart problem is resolved or if you don’t have a heart condition and are exercising to be healthy, you may want to go to a sports therapy center to learn how to build your personal exercise program.  Please get instructions on how to do stretching exercises.  Once you’ve learned what to do, you can work out on your own at home or you may choose to make regular visits to an exercise center.

These are some basic questions to ask a therapist or trainer:    

What exercises should I do?

In what order should I do them?  

How long should each exercise last? (How many repetitions?)

How frequently should I do each exercise?  (More than once a day?  Every day?  Two or three days a week?)

How long do I need to rest between exercises or between exercise sessions?  The right workout/rest ratio is important for people with active heart failure.  Start with short exercises and progress as you get stronger.

How will I know when to progress to more intensity with my exercises?

Stretching exercises. Before doing your stretching exercises, ride your stationary bike or walk for five minutes.  After a short warmup, you will get more benefits from stretching your muscles.  Stretching your calf muscles in your lower leg, your quadriceps — the major muscles in the front of the thigh, and hamstrings in the back of the thigh is important for walking well and not tiring easily.  Stretching the muscles surrounding the hips – glutes, hamstrings, and the iliotibial band — can help reduce back pain and improve posture.  You will hold each stretch for 20 to 30 seconds. 

Aerobic (cardiovascular) exercise. Examples are biking outdoors or riding a stationary bike, walking outdoors or on a treadmill, running or jogging, and using an elliptical trainer. These exercises, which you’ll spend the most time at, get your heart rate up. They also burn fat and help you lose weight. A recent study found that aerobic exercise helps remodel an enlarged left ventricle to more normal size.

Walking 20 to 30 minutes a day is a great aerobic exercise if you can manage it.  You may want to have a regular time each day to walk outside with a friend.  Walking in a grocery store is a good way to get started.  If you need some support when you walk, pushing a grocery cart acts as a great walker on wheels. 

If walking is difficult for you because your legs are weak, your balance is not as good as it used to be and you may fall, your knees are painful, or it’s too hot, too cold, or even icy out or the air quality is poor, there are aerobic exercises that you can do at home.  Riding a stationary bike is a good one.  Stationary bicycles and elliptical trainers are non-impact machines because there’s no pounding on the ankles, knees, hip joints, or spine. 

You can monitor your heart rate by wearing a heart rate monitor.  Some exercise machines have built-in heart rate monitors. You can also use the old-fashioned, low-tech method of counting your heart rate at your pulse.  Your target heart rate for aerobic exercise should be set by your doctor or an exercise specialist who communicates with your doctor. Your rate will relate to your medical condition and the type of shape you’re in.

Biking requires a lot of lower extremity strength, especially the quadriceps.  As you exercise targeted muscles, the heart sends blood and therefore oxygen to that muscle group.  Aerobic exercise also decreases your resting heart rate and your blood pressure.  Exercising your heart challenges it which helps it do a lot better when it’s not challenged.

Balance exercises.  Exercises such as standing on a balance board or wobble board are important because balance plays a role in stability and strength.  If you don’t have a good balance, something needs to assist you.  You’re going to focus more and use muscles a lot harder than a person who has good balance, or you will hold on to something such as a cane, a crutch, or a walker to take the stress off.  Randy says that, unless you have an injury, if you use a walking aid, what you are doing is making up for your lack of balance and strength. 

If you use a balance board or wobble board, please place it very close to a railing or other sturdy structure that you can grip to keep from falling.  You should also place the board on a rubber mat or rubber floor to help keep the board from slipping.

You can do balance exercises without using a balance board or wobble board.  Stand close to something you can hold onto such as a railing or the back of a sturdy chair in case you start to fall.  Try standing on one foot, standing on one or both feet with your eyes closed (but hold on to something or have someone stand next to you if you close your eyes), or practice marching, lifting one leg at a time, eyes open.

Start with short exercises and build to longer ones. Just get started.  Do a little each day and I think you’ll want to do more.  


  1. Kerry J. Stewart Ed.D, Director of Clinical and Research Exercise Physiology, Johns Hopkins University School of Medicine.
  2. Randy W. Rocha, Director of Sports Medicine, Metro Orthopedics and Sports Therapy Centers, Maryland.
  3. American Heart Association Science Advisory, Resistance Exercises in Individuals with and without Cardiovascular Disease: 2007 Update.
  4. ExTraMATCH. “Exercise Training Meta-Analysis of Trials in Patients with Chronic Heart Failure,” British Medical Journal 328 (2004): 189.
  5. Stewart, K.J. “Cardiac Rehabilitation Following Percutaneous Revascularization, Heart Transplant, Heart Valve Surgery, and for Chronic Heart Failure.” CHEST 123 (2003): 2104-2111.
  6. HF-ACTION.  “Efficacy and Safety of Exercise Training in Patients with Chronic Heart Failure,” JAMA 301(2009): 1439-1450. 

Baseball and Heart Health

Engaging in a sport as a player or as a robust fan is surely good for your heart health.  My favorite way to blow stress away and soar on summertime cottony cloud puffs of happiness is to watch a baseball game.

I share my passion for baseball in this Guest Blog post at PLoS Blogs. An Open Letter to Bora Zivkovic on Baseball

Dear Bora,

You said on Twitter that you have lived in the United States for 20 years and have never seen a baseball game and don’t know what the point of the game is.  With the 2011 spring training games now underway, I must respond.

I love baseball.  It seems as natural a part of my life as eating and writing.  Baseball makes me happy.  My team is the New York Yankees.  You notice I said, MY team.  That’s how baseball fans feel about their teams.  The relationship is very personal.  I love the glorious remarkable history of the Yankees.  Lou Gehrig, Babe Ruth, Mickey Mantle, Yogi Berra, Whitey Ford, Casey Stengel, Catfish Hunter, Reggie Jackson, Thurman Munson.  I wish those names meant something to you.  Each player was a legend and together with the owner, managers, trainers, and coaches, they built a legacy. The Yankees have had streaks of carrying on that legacy with modern players, winning championships and world series.  Baseball needs new heroes now who do amazing things, not for the huge salaries, but out of hard work for the love of the game.

Fans respect the giants of baseball for what they gave to the game and some of them we love for who they were as men.  On the wall of my exercise room is a large reproduction of a famous photograph of Lou Gehrig making his last appearance in Yankee Stadium after he learned he had the fatal paralyzing disease amyotrophic lateral sclerosis (ALS) that would later bear his name.  In his famous short speech to his fans who had packed the stadium, with his teammates lined up nearby on the field, knowing his fate, he still said: “Fans, for the past two weeks you have been reading about the bad break  I got. Yet today I consider myself the luckiest man on the face of this earth.”

Tokyo 2020 Olympics – Baseball – Men – Gold Medal Match – United States v Japan – Yokohama Baseball Stadium, Yokohama, Japan – August 7, 2021. Munetaka Murakami of Japan in action hits a home run. REUTERS/Issei Kato

Gehrig was the first “iron man”, playing 2,130 consecutive games over a span of 15 seasons between 1925 and 1939.  How many people go to work every work day over 15 years, never staying home sick?  During that time Gehrig had 17 hand fractures, back pain, and several different illnesses, but he played through it all.  His streak ended only because he developed ALS.  But his record was so strong it lasted 56 years before 

Cal Ripken, Jr., shortstop and third baseman for the Baltimore Orioles, another true “iron man” with an unyielding work ethic, broke it in 1995. Cal Ripken brought a special joy not just to Baltimore, but to all baseball fans, and won back their respect for baseball after the bitter 1994 strike.  I will always remember the standing ovations fans gave him in city after city his final year as a player, 2001. These were cities that belonged to the opposing teams the Orioles had come to play.  But the other teams’ fans showed their respect for Cal.

You never know when you watch a baseball game if you will be witnessing history.  Lou Gehrig was one of 15 players who have hit four home runs in one game!  Can you imagine the thrill of watching that happen? A home run comes when a batter lays the bat just right on the ball, just right, on the “sweet spot” of the bat, sending the ball rocketing out of the ballpark.  What ecstasy to watch in disbelief the fourth time a batter does that in the same game! How can you have any stresses in your own life on a day that happens?  Bobby Lowe of the Boston Beaneaters was the first to do it in 1894 and Carlos Delgado of the Toronto Blue Jays the last on September 25, 2003. Maybe it will happen again this year. You always hope to see something great in each game you watch.

Gehrig still holds the record for the most grand slams: 23.  A grand slam is a fan favorite.  Especially when it wins a game.  One by one your team’s players hit the ball without it being caught by the other team and they get on base.  In a grand slam the batter stands in the batter’s box (it’s not really a box, Bora) and his teammates are out there on all three of the bases: first base, second base, third base.  If the batter hits a home run, he and all three of his teammates get to run home for a grand slam, a total of 4 runs.  Pretty spectacular to hear the crack of the bat, see the ball ascend over the heads of the outfielders, you suck in your breath, praying please, please, and then shriek as the ball sails out of the ballpark.  “See ya!”, one announcer always punctuates a homer.  Lots of high fives at home plate and in the dugout.  If you’re at home watching, you’re on your feet whooping and hollering, doing high fives with your dog.  You don’t hold back.  There is no holding back in baseball.  Not for fans.  How good you feel, Bora!  This is real happiness.

The point of the game?  The point of the game is to win.  To get more runs than the other team.  To do that your pitcher needs to be better than the other team’s pitcher so that the other team doesn’t hit balls that turn into runs.  A pitcher can be so skilled and so powerful in the way he unleashes the ball, sending it hurtling sometimes 94, 95, 97 mph at the batter as a fastball, a slider, a curveball, a cutter, a changeup, that batter after batter can not get his bat on the ball.  And in some types of pitches it’s more the finesse with which the ball leaves the pitcher’s fingers than the speed that matters.  A battle of wits goes on between the pitcher and the batter, as the pitcher tries to stare down the batter and the catcher crouches behind the batter trying to influence what kind of pitch the pitcher throws. You’ll see the pitcher shake his head back and forth if a pitch the catcher is signaling is not what he wants to throw or nod yes if he agrees with it. The pitch is everything.  A team wins if its batters find a way to hit what the pitcher throws.

And those men in the infield and outfield who chase balls and lurch and dive for them are very important.  Some of the spectacular plays of baseball come from outfielders who leap higher than you think possible and snare a ball about to fly out of the ballpark or throw themselves horizontally after a ball, clutching it in one glove as their body slams bruisingly to the ground.  Derek Jeter, Yankees shortstop and captain, has a signature twisting leap that always astonishes when he catches and then wheels in mid air and throws to first or second base for an out. Infielders often try for a double play, forcing runners out at both first and second base.

One of the grandest events in baseball is when a pitcher pitches a no-hitter.  Through nine innings, not a single man on the opposing team can get a hit. Either the batters are unable to connect the bat to ball or, if they do hit the ball, someone on the other team catches it.  No hits throughout an entire game of some three hours.  An amazing feat! If you are lucky enough to see one, Bora, it is an experience of a lifetime. It is the glory of baseball.

Fans feel baseball.  We are part of the game.  And we like to help manage the team.  In this pre-season time of year we worry about whether our team will be ready for the season.  I worry about what the starting lineup of pitchers will be for the Yankees who will add some new faces this year from youngsters coming up from the minor leagues.  I hope so much that A.J. Burnett who had a terrible season last year will make us proud as a starting pitcher.  I want to get to know the new pitching coach Larry Rothschild and feel content that I agree with his plan of action.  I feel the pain of distinguished veteran catcher Jorge Posada who will be 40 in August and learned that, barring some emergency, he will never again catch for the Yankees.  “I think I can still catch,” I heard him say in an interview.  He instead will be their designated hitter, a less involved role.  For all the emphasis on team and winning, a team nevertheless is made up of individual men who have feelings and pride, and it is hard to get older in baseball and relinquish leading roles.  A catcher helps direct a pitcher’s throws.  A DH just goes out and takes his turn at bat.

The Yankees will face outstanding competition in the American League East this season.  The Boston Red Sox who were held to low expectations by injuries last year could be a dangerous opponent this spring and the Phillies who snared Cliff Lee, a star pitcher the Yankees badly wanted, now have a starting lineup of pitchers that may be the best in baseball.  The Baltimore Orioles, under new leadership, were showing big improvement the end of last season and might surprise everybody.  There are great expectations for an exciting, suspenseful competitive season.

A baseball game squeezes many intense, anxious moments out of us.  You experience the game individually, willingly allowing what you see and hear and hope for to penetrate your senses and govern your soul.  Watching baseball is a take-no-prisoners commitment.  And yet it is also a spring and summertime and fall layback, informal, take-the-family group event where you eat and chat and join with thousands of others as you root for your team.  You can also enjoy baseball about as much by watching a good game on TV.  In fact, @Hudsonette recommends doing that before you go to your first game in person because you learn a lot by listening to savvy announcers call the game and explain what’s happening.

Some cool people on Twitter love baseball and send you some sage reasons why, if you give it a try, Bora, you will love it, too:

If you’re unfamiliar with baseball, it helps to watch a game while listening to great announcers, such as Vin Scully of the L.A. Dodgers, or Ken Singleton with the Yankees.  They will not only explain what just happened, which can be baffling because often several things are happening at once, but also the strategic choices and the moment to moment tension of competing interests involved in each pitch and each play.  It’s intricate, complex, dependent on individual skill choreographed with other teammates while battling the sun, wind, physical injuries, mental lapses, and the opponents’ own hidden stratagems.  It’s a game of statistics coupled with human grace.  

There’s not much more beautiful than watching the great relief pitcher Mariano Rivera strike out a batter with his cut fastball, or the sound of a ball hit perfectly on the sweet spot of the wood, or the shortstop Derek Jeter appearing out of nowhere to make an intricate play that saves the game.  There’s no greater anguish than being a Cubs fan.  But above all, it’s fun to go to a game, even a minor league game, sit in the sunshine, eat what you want, say what you want very loudly, and get away completely from the troubles of the world.

I don’t watch other sports. Baseball is different. No sport is as literary as baseball is. It’s a slow, evolving story that takes place over nine innings–no timers, no buzzers, no masks. The game begins with two protagonists, two pitchers, and goes from there.

Heart Sense Helpathon: Sixth in a Series

Mini Exercises(Beware of Sitting for Too Long at One Time)

I can’t leave our discussion of exercise without talking about mini exercises throughout the day to counteract our terribly sedentary lifestyles.  I confess I sit far too long every day.  I, like Peter Janiszewski, have to make a plan to change that.  And so do you.  Almost all of us sit too long.  Think about it.  We sit at our computers to write, do research, communicate by e-mail, Twitter, Facebook, and more, and play games.  We sit to eat.  We sit to read.  We sit driving in our cars and on other transportation. We sit to chat on the telephone and when friends come over to visit.  We sit to watch movies and TV shows.  I am a writer and so I sit a lot at the computer.  When I was writing the heart failure book with Edward Kasper, both of us considered investing in a stand-up desk because, frankly, the part of your body you sit on for long times can start to go numb, and it is just not good for your circulation to sit for long periods.  But the health effects of being sedentary go farther.

Who is Peter Janiszewski, you may ask?  He is co-author with Travis Saunders of a delightfully written and highly informative and helpful blog called Obesity Panacea which you can find here at the PLoS (Public Library of Science) blogging network.  Please read their series of excellent blog posts about how sitting long periods harms your health and may cut short your life.  Break up your sitting pattern, they urge, by frequently getting up and doing mini exercises and other activities.  


This get-you-to-your-feet set of articles begins with a five-part series on sedentary physiology by Travis Saunders. In Part 1, Travis really got my attention with this simple fact: “sitting too much is not the same as exercising too little.”  He says he borrows this line from Marc Hamilton, one of the leading researchers in sedentary physiology.  But I heard it on Obesity Panacea. 

In Part 2, he reports that a study of over 17,000 Canadians found that “individuals who sat the most were roughly 50% more likely to die during the follow-up period than individuals who sat the least, even after controlling for age, smoking, and physical activity levels.”

In Part 3 Travis discusses the benefits of taking breaks from sitting.  He reports on another study that found “The greater the number of breaks taken from sedentary behavior, the lower the waist circumference, body mass index, as well as blood lipids and glucose tolerance.”

Some readers responding to this popular series wondered how much sitting time was too much and whether it helped enough just to get up and go do some chore or whether you need to exercise every so often throughout the day.

Peter Janiszewski responded to his blogging partner with a not-to-be-missed post My Home-Based Mini-Exercise Regimen.  

“Essentially, I decided (completely arbitrarily) that I would do mini exercise breaks throughout my workday, with the daily goal of reaching 450 repetitions of whatever random movement popped into my head at each break.”Peter got an enormous reader response to that blog post and followed up by sharing suggestions from readers.  For instance, reader Dirk Hanson said this:  “I’ve started arranging things in a way that requires me to bounce up from my desk at various intervals for 15-minute chore breaks–watering all the house plants, filling the bird feeders, vacuuming one room, making coffee, getting something out of the garage, taking a brief walk, whatever.”I am so impressed with this fine blog and its authors.  Here, reprinted from their PLoS blog site, are bios for Travis and Peter.  Please visit them often. A good prescription for your health.

As for me, I will break up my long sitting periods.  But, I warn you, it’s hard to do, at least at first.  I want to turn now to finishing the syllabus for the spring writing course I teach.  But I would need to keep sitting here to do that and I can’t because now it’s time to get up and do marching exercises or use my leg press or go play with the dog or walk through the house looking at the ceilings to see if there are any cobwebs in the corners.  Jeez, I’ve got to work on the balance of all this. Up, down.  Concentrating, distraction.  Writing, not writing.  But, otherwise: Better health, not health?

Hey, it’s cheating to get up from sitting and go to the fridge.

Heart Disease Deaths Decline 27.8% — Now let’s do our part and commit to healthy living

Heart Disease Deaths

 We are continuing to put ourselves at risk for getting heart and circulatory diseases through improper diets, lack of exercise, and even the continuation of smoking. “As risk factors for coronary disease increase in a population, we also expect the future incidence of coronary disease to increase within the population. Control of risk factors is critical in the prevention of coronary disease,” said Edward K. Kasper, clinical director of cardiology at Johns Hopkins Hospital and co-author with me of Living Well with Heart Failure, the Misnamed, Misunderstood Condition. And Daniel Levy, director of the Framingham Heart Study says that with regard to heart failure, “in the majority of cases, it is preventable.”  That is an amazing statement.
Dr. Roger urges people to take responsibility for their risk of getting cardiovascular diseases through personal “risk factor management.”

Most of us know what to do.  We just need to start doing it. 

We need to lose weight. Two out of three of us should lose weight! Even losing a little weight can improve your chance of avoiding heart disease. We need to control our blood pressure and cholesterol.  One-third of adults have high blood pressure but only 48% of those aware of their condition have their blood pressure controlled to a safe level. We need to eat less sodium, less saturated fats, and NO trans fats. We need to eat whole grains, fruits, vegetables, and unsaturated fats. We need to exercise regularly, and some of that exercise should be vigorous enough to give our hearts a workout, which means breaking into a sweat or increasing our heart rate and starting to breathe faster and heavier. Stop smoking and if you have not started, don’t smoke.

I am going to renew my commitment to heart-healthy daily habits and I ask you to join me.  A colleague on Twitter got in touch just yesterday to say she has put on some weight and do I have advice.  Well, I have put on some weight, too.  I need to do better at eating right every day and doing the right exercises every day.  Let’s make this commitment together.  As winter approaches, it is all the easier to fall into bad habits of not exercising, sitting too much, and eating too much.  In the coming weeks, I’ll discuss our goals in more detail.  Adopting these healthy daily habits is the best present you could give your loved ones this holiday season.

Heart Failure a scary name that doesn’t make sense

For the last week, I have been mulling over the name heart failure, questioning why the collective conditions that bear its name ever got such a name, and looking into the very murky area of heart failure death statistics.  , many of us who were shocked to get the frightening diagnosis of “heart failure” do not have hearts that have failed.  We got treated, some more quickly than others, and went right on with our lives.  Others are not so lucky and die of heart failure, sometimes suddenly and sometimes after years.  Trying to discuss what heart failure is getting very difficult because it is not a disease, it is a syndrome brought on by many different underlying causes including coronary artery disease, disease of the heart muscle, high blood pressure, valve malfunction, poor artery connection, alcoholism or drug abuse, and certain chemotherapies, to name just a few.  And heart failure affects the heart in different ways. 

The term heart failure covers conditions ranging from no symptoms to severe shortness of breath from fluid collecting in the lungs, swelling of the abdomen, ankles, and feet, and fatigue even at rest — see American College of Cardiology/American Heart Association Stages of Heart Failure and New York Heart Association Classification of the stages of heart failure here.

Somehow the field of medicine has allowed so much under the same umbrella of heart failure that discussing heart failure becomes confusing for physicians and patients.  “Skilled clinicians have difficulty with this and most fumble around,” James B. Young,  Professor of Medicine & Executive Dean, Cleveland Clinic Lerner College of Medicine, told me in an e-mail. So trying to write about what medicine calls heart failure, what’s wrong with the name, and what, if anything, to do about it is challenging. 

Then yesterday something happened that clarified the picture for me.  I knew when I got a pit bull from a rescue organization a year ago that he had a kidney problem and I agreed to take him because he had a terrible earlier life that included months spent in a cage that nearly drove him insane.  I wanted to give him a loving home for whatever time he had, a year or two.  He arrived with skin hung over his skeleton, but he had a great appetite and put on weight, filling out very normally, enjoyed his walks, and loved to play catch-me-if-you-can with a nylon bone or an old house shoe in his mouth every time one of us who had been out during the day returned home.

Heart Failure a scary name

Then in the last week, things changed.  He started throwing up and for the last four days he could not keep anything down.  He was noticeably losing weight.  His very thick neck thinned in a matter of days and his spinal column began protruding.  He would only go one block on a walk before turning to come home.  He quit playing catch-me.  He lay constantly on his bed or, at night, my bed.  Monday we took him to the vet and yesterday morning we got the results of his blood tests.  His blood urea nitrogen (BUN) was 237, the highest my vet said he had ever seen. 

A normal BUN level in a dog is 6 to 31, the vet said.  A high BUN level indicates that toxins are not being removed by the kidneys.  My dog was in kidney failure, my vet told me.  That was the first time I was told he was in kidney failure.  And those words made a lot of sense.  Teddy was not in kidney failure for the last year, only for the last few days.  His kidneys indeed had failed.  If he were a person, he would have to either go on dialysis or get a kidney transplant in order to live.  Teddy was miserable, had noticeably lost weight quickly, and also had grown a tumor which I would have wanted the vet to operate on, were it not for the kidney failure.  The dog doctor said that the anesthesia itself could be so toxic on the kidneys that it might kill Teddy.  And so at noon, with tears and heavy heart, to end his suffering, we had him put to sleep. 

Yesterday afternoon in a house far too quiet, I tried to return to writing.  And then I got to thinking.  Kidney failure.  Heart failure.  The two terms sound alike but are used by doctors for very different health problems.  But why?  In kidney failure, the kidneys don’t work anymore.  It’s so obvious you hardly need a blood test to prove it.  As with heart failure, many different things may have caused it, and the kidney failure may have come on gradually or acutely, but kidney failure is kidney failure.  It means what it says.  Contrast that with heart failure, where most of the time the diagnosis is made, the heart is still working. 

It has not failed, although something about the heart is not normal and may have begun causing symptoms.  But if the heart had failed, an analogy to kidney failure would mean that a person with heart failure would have to regularly be on a machine that circulates blood throughout his system or get an implanted device that takes over at least partial function of the heart or get a heart transplant in order to live.

Heart failure is an appropriate name for patients who are now said to be in “end-stage heart failure” in which they have only months or less to live unless they get mechanical aid to take over part or all of their heart function as in a ventricular assist device ((VAD) or get a heart transplant.  But I submit that this is the only true heart failure.  Just drop the first two words, because “end-stage heart failure” is redundant.

Heart failure is not an appropriate diagnosis for people who have no symptoms or who have symptoms that can be improved or even disappear under treatment.  

Why does it matter what conditions are called heart failure?  Why does it matter how many people hear their diagnosis is heart failure?  Shouldn’t I just leave the naming of medical conditions and diseases to doctors and mind my own business?  What’s in a name?  

Here’s why it matters.  As I consider the words heart failure, and the effect those two words can have on the person diagnosed with it, I am reminded of an event that happened to me while I was in college.

Occasionally someone can say something to you that is so scary it seems it might scare you to death.  Near final exam time, I quite suddenly came down with a paralyzing illness, transverse myelitis, and had the misfortune of being hospitalized where doctors had never seen a case of transverse myelitis, did not recognize it, and decided to operate on this viral illness, looking for an obstruction they did not find. While inside me for “a look-see”, the general surgeon cut into inflamed tissue to take out my healthy appendix.  Already very sick and rapidly becoming paralyzed, I nearly hemorrhaged to death from the surgery and was placed on the hospital’s “critical list” of patients who may die.

While I knew how terrible I felt, neither doctors nor family had let me know how very sick I was.  The sight of my 8-year-old blonde cherub-faced nephew cheered me. This was his first visit and I could tell he was excited about something and wanted to share it with me.  How sweet.  He came right up to my bedside. 

“Hey, Aunt Mary,” he gushed, “Do you know you’re on the CRITICAL LIST?”  

AAAAAAhhhhhh!  Terror hijacked my entire body. 

No, Gary, nobody had told me I’m on the CRITICAL LIST.  Who let this kid in the room?  There’s a reason why children shouldn’t be allowed in hospitals.  I couldn’t speak.  A numbness began in my feet and crept up my legs. 

This story, still so vividly recalled, comes to mind as I write about the diagnosis of heart failure because like those other two words critical list the term heart failure is very frightening to hear.  And much of the time heart failure is an unnecessarily scary diagnosis.  Every day thousands of people are frightened to learn they have heart failure.  I was.  

Never having had any known heart problem, I sat in shock when a cardiologist told me in 2003 that I had HEART FAILURE.  When a doctor tells you that, it’s like being told you have end-stage cancer. You know nothing about heart failure, probably have never heard of it, and it sounds quite fatal.  I went home and made out a will, then spent several months educating myself about heart failure and going from doctor to doctor, searching for the right treatment, afraid that I could drop dead at any moment. 

It’s one thing for an 8-year-old kid to scare a sick patient, quite another for a grown-up doctor to do it.   I realize that there are many times when a doctor has to give a diagnosis to a patient that is frightening and I appreciate that this is emotionally hard on many caring doctors. 

But, doctors, do you ever wince when you tell a patient she has heart failure when you believe that proper medications may make a big change in her symptoms?  I ask doctors to be more aware that a diagnosis is a two-way act of communication:  It words the physician says and it is worded the patient hears. One is just as important as the other.  Your diagnosis is not complete, doctors until the patient has heard it.

I was not able to find out who originated the term heart failure as a diagnosis.  Renowned cardiologist historian Arnold M. Katz, who is the most likely source, told me “It will be hard to find out who (first) used the term heart failure as most of the early texts were written in Latin, a language I do not speak.”  But the name got into the medical literature long ago before modern therapies were available.  

I wish the medical community would find a new term — how about Heart Flux or Heart Fatigue or Heart Stress Syndrome — or multiple terms for diagnosing this condition that now wears one inappropriate label disturbing and confusing for the person diagnosed and those in the labeled person’s close circle at home and at work. How much easier and more exact to tell your patient and for him to hear the words, “Your heart is in a state of flux/or fatigue/or stress/ and I have some medications to give you that have a good chance of helping it a lot” instead of “You have heart failure.”  

Until then, I hope that, when pronouncing the scary words “heart failure” to a new patient, doctors will take the time to explain that, much of the time, it’s not what it sounds like.  

Heart Failure Death Statistics: Don’t believe what you read on the internet

In its website section on heart failure facts, the Heart Failure Society of America directly faces the question all people with heart failure and their loved ones desperately want to know:

“Q: What is the prognosis for a patient with heart failure?

A: Less than 50 percent of patients are living five years after their initial diagnosis and less than 25 percent are alive at 10 years. Poor prognosis can be attributed to a limited understanding of how the heart weakens and insufficient private and government funding.”  

I was startled to see those grim statistics on the HFSA website, given that clinical studies published in peer-reviewed journals have shown that ACE inhibitors and beta-blockers prolong the lives of people with heart failure and in the last decade those medicines have become standard recommended therapy.  Implanted defibrillators known as ICDs that prevent sudden death by shocking the heart when the heart goes into a chaotic rhythm, cardiac resynchronization therapy (CRT) which corrects abnormal beating of the left ventricle, and other effective treatments have also grown in use in the last decade.  

I also felt uneasy reading the HFSA answer that tied “poor prognosis” to “insufficient private and government funding.”  That seemed to have a political tinge to it, out of place in an answer directed to worried patients and family members about how long someone can live with a diagnosis of heart failure.  Many conditions can cause heart failure in which the heart is not pumping out enough blood to meet the needs of the body. 

When a patient with heart failure has a poor prognosis, there can be any number of reasons, including these:  the doctor did not order the most effective medications that could have prevented progression of the heart failure, the patient didn’t faithfully take the correctly prescribed medications either because she couldn’t afford them or was not reliable, the patient didn’t observe a low-sodium, low-fat diet and get regular exercise, and, frequently, the patient has other significant health problems. 

Also, despite excellent care, a patient may have a heart too damaged from a heart attack or from a genetic malfunction to be able to successfully pull out of heart failure.  But I doubt any doctor ever tells a patient’s family, “Your husband and father is in late-stage heart failure and has only a few months to live because the government didn’t fund enough grant money for heart failure research.”

Working on the assumption that a journalist or a person with heart failure or, for that matter, any member of the public could ask what HFSA’s source is for its grim prognosis and get an answer, I contacted HFSA.  I sent an e-mail to Cheryl Yano, HFSA longtime executive director, explaining that I was writing this blog report on heart failure death statistics, and then a second e-mail, but did not get a reply, so I called.  She would not talk to me. 

Loreen Anderza, HFSA administrative assistant who answered the phone, said there is no specific source for the HFSA statement on how long people with heart failure can expect to live.  It is “a consensus of experts in the field.  They have no source for it,” she said, after putting me on hold to speak to Cheryl Yano.  I asked if Ms.

Yano would talk to me about whether or not heart failure is becoming more of a chronic condition that can, for most people be managed, and Ms. Anderza said that Ms. Yano is not the right person to talk to because she is not an MD.  I asked who at HFSA I could talk to and she said Ms. Yano had no one to recommend.  Ms. Anderza said that everyone uses the same numbers and suggested that I ask the American Heart Association if they know what the source is for the scary prognosis that is on the HFSA website.

Instead, I contacted the president of HFSA, Barrie M. Massie MD, Chief of the Cardiology Division at the San Francisco Veterans Affairs Medical Center who responded in an e-mail:

“This is out of date.  It is based on Framingham data and several trials largely dating back 10-20 years.” 

The Framingham Heart Study

The Framingham Heart Study supported by the National Heart Lung and Blood Institute, part of the National Institutes of Health, is an ongoing project begun in 1948 that has enrolled over 14,000 members of three generations and periodically issues reports about the risk factors for developing heart disease.  The study here has provided many important findings including the risk of cigarette smoking, cholesterol, high blood pressure, and much more.  But the study is set up to find information on all forms of heart disease and its ability to track heart failure patients is quite limited. 

Original Framingham participants are seen at a clinical visit every two years and their offspring are seen every four years. “Participants with heart failure often undergo treatment between a clinic visit and before death and these interventions are not captured in our clinic visits,” said Daniel Levy MD, director of the Framingham Heart Study. Therefore his report did not have information on what treatments heart failure patients who died were using.

Many sites on the internet including HFSA that offer a prognosis for heart failure base their projections on a Framingham study published in 2002 in the New England Journal of Medicine that used data going back 15 to 20 years ago.  Even the American Heart Association’s Heart Disease and Stroke Statistics 2010 Update quotes the Framingham death rates for heart failure. 

I examined the Framingham report on heart failure and found that the prognosis the study gives is based on a very small number of deaths — 86 deaths of men and 80 deaths of women.  This study occurred before the modern therapy of ACE inhibitors and beta-blockers which are proven to prolong life in heart failure.

The Framingham study followed 323 people (145 men and 178 women) who developed heart failure between 1990 and 1999.  Dead in five years were 59% ( 86) of the men and 45% (80) women.  The study did not learn whether these men and women died of their heart failure or of some other cause, said Dr. Levy, lead author of the report that appeared October 31, 2002, in the New England Journal of Medicine.            

The Framingham study on heart failure deaths also looked at deaths in  decades going back to the 1950s and said that “Overall, there was an improvement in the survival rate after the onset of heart failure of 12 percent per decade.” 

In the decade since the Framingham study of the 1990s, “there is optimistic evidence that we have improved treatment for people with heart failure,” Dr. Levy said in a telephone interview, though he would not estimate by how much.

Other Clues to Heart Failure Prognosis

I talked to eight nationally known cardiologists in preparing this article, to get a sense of where heart failure stands as a treatable condition vs a progressively fatal condition.  Not all are quoted.  One cardiologist who asked not to be identified because he knew what he was saying was “controversial” commented on the annual AHA Heart Disease and Stroke Statistics Update:  “These are not really current data.  They are estimates extrapolated from NHANES (National Health and Nutrition Examination Survey) … with changes based on changing size and age of the population. 

Hence, they are unlikely to be accurate and will not reflect real or measured changes.  Consider them propaganda for those that thrive on high event rates. These data are useful for those seeking investment in development programs for heart failure treatment.”  NHANES, a part of the Centers for Disease Control (CDC) surveys about 5,000 people in the United States a year and estimates results for the national population. The AHA Heart Disease and Stroke Statistics 2010 Update here bases its estimated incidence of heart failure and prognosis of life expectancy largely on NHANES and the Framingham Heart Study of the 1990s.

One clue to how long people with heart failure live comes from clinical studies that try to prove a new drug or device is better than standard care at prolonging lives.  Both Dr. Massie and Alice Macette MD, chief of the National Heart Lung and Blood Institute’s Heart Failure and Arrhythmias Branch, point to the improving life expectancy for people in the placebo group of these trials — those who are on the existing standard therapy against which the new treatment is being tested.  

“For instance in the SOLVD study of 1991 which first showed the benefit of ACE-inhibitor drugs,  the three-year survival rate was about 65% in the group receiving placebo, whereas three-year survival rates were approximately 80% (or greater) in two studies (one on eplerenone and one on use of CRT for mild to moderate heart failure)reported this week at the American Heart Association here and here dealing with heart failure patients of varying degrees of severity,” said Dr. Macette.  In fact, the improvement of heart failure outcomes has helped set the bar higher for any new therapy being tested,” she said.

Dr. Massie agreed.  “If you compare the placebo groups over time there is a substantial decline in the placebo group mortalities,” he said.  “Used to be up to 20% per year and now is close to 8% per year.  This low (death) event rate has made the conduct of clinical trials hugely expensive, which is why there are far fewer of these and even fewer positive ones.”

I also asked cardiologists to judge from their own experience how treatable heart failure has become.  Edward K. Kasper MD, director of clinical cardiology at Johns Hopkins Hospital and a specialist in heart failure, (disclosure:  I co-authored Living Well with Heart Failure, the Misnamed, Misunderstood Condition with him) said “I expect most to improve with modern therapy for at least some period of time – say 75%.”

“Indeed there have been great advances and people do live longer, but progress has been slow and we need to do better,” said Dr. Massie.

I asked Mariell Jessup MD, chair of the American College of Cardiology/American Heart Association Guidelines for the Diagnosis and Management of Heart Failure in Adults found here if heart failure has become more of a chronic condition:  

Question:  “From your own patient experience, do you find that most people diagnosed with heart failure will be able to manage their condition, keeping it from advancing, or even improve with the right treatments?”

“I agree,” she replied. She pointed to a study of 2,029  people taken from the general population in Olmsted County, Minnesota.  Study participants were classified according to how sick they were.  Since this was a random sample, it included healthy people called stage 0.  Stage A had risk factors for heart failure, stage B showed cardiac structural or functional abnormalities found by testing but were not experiencing symptoms, stage C had symptoms of heart failure, and stage D had end-stage heart failure.  Survival at 5 years was 99% in stage 0, 97% in stage A, 96% in stage B, 75% in stage C, and dropped to 20% in stage D, by far the smallest group with only 5 people. The study published March 12, 2007 online in Circulation can be found here.  “It is only those patients who present with intractable symptoms that do poorly,” Dr. Jessup said.

Needed:  A Huge National Prospective Study or a National Registry

The Minnesota study, though still small numbers, gives some window into a more accurate prognosis for heart failure.

But the only way doctors and patients and their families will get a really accurate handle on prognosis with current therapies is if a huge prospective study is undertaken or at least a national registry that includes tens of thousands of patients seen at many academic centers and those seen in the community by both cardiologists and general practitioners. The study or registry should include a variety of races and ethnic backgrounds, male and female.  Much could be learned by such a study, including this information:

  • modern survival rates and deaths due to heart failure and not some other cause
  • percent of people with heart failure who die suddenly from ventricular fibrillation
  • possible geographic differences in death rates
  • treatments patients were on up to and at the time of death
  • a library of data on the genetics of heart failure

Such a study or registry should have no funding from pharmaceutical companies.

Just before publishing this article, I checked the website of the Heart Failure Society of America.  The unnecessarily scary prognosis for heart failure is still there with not even an asterisk explaining how old and outdated the data are on which it is based.

My Journey with Heart Failure

I got to know something about heart failure the hard way, by having it.  I also happen to be a health journalist.  So when I got the stunning diagnosis in 2003, I began researching this condition that sounded so fatal.  Not only was my diagnosis overwhelming, but my first encounters with the health care system were dismal.  It took me three and a half months to find good care.   My story is worth sharing because it illustrates how important it can be for a patient to become knowledgeable about an illness and get involved in her own treatment plan.

Heart failure is a condition in which the heart can no longer perform well enough to get adequate blood and oxygen to the body.  With 6 million people living with heart failure in the United States alone, it is already a huge medical problem and will get bigger as baby boomers continue to hit their fifties and sixties.  Heart failure is a serious condition that can be fatal, but I would learn that it often can be managed with the right treatments.  My own research about heart failure changed my life.

In December 2002, I found myself getting fatigued and easily out of breath, with swollen ankles and abdomen. My asthma was normally under control, but I turned to my asthma specialist because of the shortness of breath.  He noticed my swollen ankles and said he didn’t think my problem was asthma.  I had begun to think the same thing.   He told me to see my internist right away who referred me to a cardiologist who gave me a diagnosis in words that roll off the tongue of a heart specialist but shock the patient who hears them:  “idiopathic dilated cardiomyopathy and biventricular congestive heart failure.”  It was those last two words that got my attention. 

I tried to get over my shock and digest the big words of the diagnosis,  searching the internet to make some sense of what had happened to me.  Cardiomyopathy, I learned, is a disease of the heart muscle, and dilated cardiomyopathy means that the heart is enlarged.  When a heart stretches, it is trying to work harder, but an enlarged heart actually functions more poorly.  The “idiopathic” in my diagnosis means doctors don’t know what caused my cardiomyopathy.  Half of the people who are told they have dilated cardiomyopathy have no known reason why it developed.  An echocardiogram that uses sound waves to show the heart beating on a monitor revealed that the amount of blood my heart pumped out to my body with each beat was only 15-20% instead of the normal 55 to 65%.  The left side of my heart was enlarged, the result of struggling to work harder.

My search to understand my condition led me to national treatment guidelines for heart failure developed by expert panels of the American College of Cardiology and the American Heart Association.  I recommend every person with heart failure and their loved ones read these guidelines.  To my dismay,  I saw that I was not on two of the basic medicines proven in clinical trials to treat heart failure and prolong life, an ACE inhibitor, and a beta-blocker.   I turned to a second cardiologist.   He insisted I have an angiogram in which a catheter is threaded through an artery in the groin up to the heart to see if the heart’s main arteries are blocked by fatty buildups that could prevent blood from getting through.  The question he wanted to answer did I have severe coronary artery disease that could cause a heart attack.  I didn’t agree to the angiogram immediately. I didn’t want to have this test because  I am extremely allergic to the dye used in the exam.  So he suggested I see a heart failure specialist, which I did. 

My Journey with Heart Failure

The specialist blew me away with his advice: I needed a heart transplant.  He ordered a stress echocardiogram, the same sound-wave test I had gotten before in a cardiology group practice center, but this time, it would show how my heart functioned when challenged by activity. However, the doctor running the test stopped before getting to the stress part.  “We found what we need to know,” he said.  The specialist would come in to talk to me.

I waited for about half an hour wondering what the heck.   The specialist arrived, sat down beside me, and drew a rough outline of my heart on a piece of paper, shading an area from the left side down and around the bottom.

 “This part of your heart is dead,” he said.  “You have either had one large heart attack or several small ones.”

I felt shocked to my bones because this was news to me and, next, oddly, I felt a deep embarrassment, almost shame.  I was a veteran health journalist and I had not known when I was having a heart attack?  How incompetent of me.

The specialist agreed that I must have an angiogram and said he could give it to me.  The test would take 30 minutes and would likely find several very occluded arteries, he said.  The second cardiologist I had seen, the one who referred me to the specialist, had told me he could do the angiogram in 20 minutes and held out more hope than the specialist did that he could perform some intervention during the angiogram to open the dangerously occluded arteries he expected to find.  I chose the 20-minute man, reluctantly agreeing to this dreaded test.  

I warned this doctor who would perform the angiogram that I am very allergic to the dye he would use in the test.  I had never had an angiogram, but the same iodine-based dye is used in CAT scans as a contrast medium, and years earlier during a CAT scan I suddenly couldn’t breathe.  The doctor assured me he could give me medicines before the procedure that would prevent any allergic reaction.  I took the medicines, the procedure began, and I thought this isn’t so bad, piece of cake.

Then a technician called out “Mary, how do you feel?”  

“I feel strange,” I said.  I had no pain or heaviness in my chest but felt a very abnormal and unsettling sensation in my heart.  “Very strange.” 

The next thing I knew the procedure was over and the doctor who administered my angiogram was hurrying out of the room.  “But I have questions to ask you,” I said to the back of the departing cardiologist.  “You won’t remember the answers,” he said over his shoulder.

As soon as the doctor left the procedure room, a technician who had helped with the test spoke up.  “We had to shock you,” she said.    

 I was dumbfounded.  “I didn’t feel anything.”

“It’s a good thing you didn’t.  It would have been very uncomfortable.” 

I looked down and saw three burn marks on my chest and later found one on my left ribs.  I had died on the exam table and been resuscitated with four electric shocks.  But we found the answer to the doctor’s question, which I would soon learn. 

My accidental worldly departure during the angiogram led the doctor who gave it to admit me for an overnight stay in the hospital for observation; but, although I asked to see him, he would not visit me. He turned my care over to the third cardiologist, the heart failure specialist.  I’m a big believer in all’s well that ends well and was glad to be alive. 

The specialist came to my room and told me what the angiogram had revealed:  my arteries were not at all blocked. I did not have coronary artery disease.  Therefore, reversing what he had told me days earlier, he said I could not have had a heart attack.  My face lit up with a huge smile. “That’s great!” I nearly shouted.

“Not really,” he said, no smile on his face.  “We could have fixed that.”

“So where do we go from here?”  I asked, feeling deflated that he did not share my joy.

“Heart transplant,” he responded.

None of the three cardiologists I had seen, including this one, had put me on the two major recommended medicines for heart failure, an ACE inhibitor, and a beta-blocker.  Yet, without seeing what these drugs could do to improve my own heart’s function, the specialist wanted to take my heart out of my body and sew in a new one.

No, no, no!  You’re jumping the gun, fellah. I was so surprised that after getting such good news from a test that nearly cost me my life he would want to proceed with the same plan as before the test.  I knew I had to get away from this doctor and look once again for good care.  It was now three months since my diagnosis of heart failure and the clock was ticking.  Without proper treatment, heart failure progresses and is deadly.  And one aspect of heart failure is that a person who has it can experience sudden death, dropping dead in an instant unless someone can get to them with a defibrillator to shock their heart back to work.

Frightened and very stressed, I asked myself, “Who do I trust?”  That’s not grammatically correct, but it was what my brain was asking.  The answer came to me:  a neurologist I had seen many years ago at Johns Hopkins Hospital.  I contacted him and explained my situation.  He contacted a colleague who was a senior cardiologist at Hopkins who told me the person to see was Edward Kasper, then director of the Heart Failure and Transplant Service.  Uh, oh, I thought, concerned about the “transplant” part of his title.  But a doctor I trusted was sending me here and I felt this was the right thing to do.

Dr. Kasper listened to my story and then said that he would not consider a heart transplant.  The first thing to do, he said, was to see how I did on an ACE inhibitor and a beta-blocker, along with some other medicines for heart failure.  And if those didn’t work well enough, there were other things to try such as implanted devices to help the heart work better.  A heart transplant was only a last resort.  I was scheduled to begin teaching a university writing course in a few weeks.  Would I be able to do that?  Yes, he said, he was sure I would be feeling much better soon.  I thought he seemed almost nonchalant about my situation, which, actually made me feel relieved.  He expected me to get better.  

I took my new medicines faithfully and began improving. My attitude toward heart failure changed as I relegated it to the background of my life and got back to teaching writing and co-editing a book.  We decided I should get a biventricular pacemaker to correct an electrical timing problem that made my left ventricle beat out of sync.  This problem called a left bundle branch block was not the cause of my heart failure.  But the uneven beating of my left ventricle caused my heart to work harder.  I recovered from heart failure.  I still have my own heart which returned to normal size and is pumping blood out at a very normal 65%.   I continue to take low doses of an ACE inhibitor and beta-blocker, avoid high-sodium foods, and exercise.   Since we don’t know what caused my cardiomyopathy which caused the heart failure, I want to do all I can to avoid its returning.  

My experience with heart failure and the health care system made me realize just how important we, the patients, can be in deciding a treatment plan.  The patient must truly be a partner with her doctor and not passively accept whatever any doctor says to do.  In order to be a strong partner,  you will need to educate yourself to become informed and then get involved in planning your treatment.

What turn might my life have taken if I had not done some research and continued looking for the best care?  Getting the gift of a new heart is a miraculous second chance for those people with severe heart failure who have not responded to medicines and devices to help their hearts work better.  But a heart transplant also means a lifetime of taking many medications, having some serious side effects, and getting tested repeatedly.  Let’s be sure those who get this precious gift need it.  I, thankfully, did not.

What is Mitral Valve Regurgitation that led to Elizabeth Taylor’s Heart Failure?

I am saddened that Elizabeth Taylor died today of heart failure.  In his appreciation of her, film critic Roger Ebert said in the Chicago Sun-Times, “Of few deaths can it be said that they end an era, but hers does.” 

She is a star that many of us felt we knew.  She was a great actress and a woman of great beauty who was a hard-working champion of people with AIDS and always seemed to be a determined person who knew herself. Yet she always had a vulnerable side.  So many marriages, so many illnesses, so many, many surgeries, over 40, I’ve read.  And then her heart problem developed.  This leads me to talk a little about that problem, mitral valve leakage.

The heart’s mitral valve

The heart has four chambers and four valves that open to let blood through to the next chamber of the heart and on out to the body and back.  The valves, acting as gates, then immediately close to prevent the blood from running back where it just came from. The mitral valve looks like a mouth with leaflets that look like lips that open and close.  When I saw it in action on an echocardiogram, a test that uses sound waves to show moving pictures of the heart, I thought it looked like a very sensuous mouth.  Each of the valves looks different.  But because it looks like a mouth, the mitral valve stands out.  Blood has just left the lungs carrying oxygen and arrives at the left atrium of the heart.  The mitral valve’s mouth opens to let the blood pour through into the left ventricle.  As the left ventricle contracts, the mitral valve closes and the aortic valve opens to allow blood to leave the heart and get out to the body. 

Heart Failure

A mitral valve can start to leak.  This can range anywhere from a condition that is minor and does not need treatment to a serious problem that leads to a weakened heart and heart failure.  In Elizabeth Taylor’s case, it led to heart failure and her symptoms must have included difficulty breathing and fatigue.

I asked Edward K. Kasper, M.D., director of clinical cardiology at Johns Hopkins Hospital, to talk a little about what can go wrong with a mitral valve.  I should mention for disclosure that Ed is my cardiologist and co-author with me the book Living Well with Heart Failure, the Misnamed, Misunderstood Condition:

A leaky mitral valve – mitral regurgitation, is common and has many causes. Most people tolerate a leaky valve well, but some need surgery to correct the leak. Repair is preferred to replacement. The MitraClip (which was used for Elizabeth Taylor) is a new technique to try and fix mitral regurgitation in the cath lab rather than in the operating room. There are no long-term comparison studies of this technique compared to standard OR repair – that I know of. Repair is currently the gold standard for those who have severe mitral regurgitation and symptoms of heart failure.  Outcomes are better including improvement in symptoms and survival in patients with the repair rather than replacement.

What makes a person from a leaking mitral valve to heart failure?

The leakage back into the left atrium increases the pressure in the left atrium. This increased pressure in the left atrium is passed back to the lungs, causing fluid to leak into the lungs, leading to heart failure. With time, the demands of severe mitral regurgitation on the left ventricle will lead to a weakened left ventricle, a dilated cardiomyopathy (disease of the heart muscle). We try to prevent this by operating before it gets to that point.

Mitral regurgitation can also be a consequence of dilated cardiomyopathy – the orifice of the mitral valve enlarges as the left ventricle enlarges. The leaflets of the mitral valve do not enlarge. Therefore, they no longer close correctly, leading to mitral regurgitation. 

It’s easy to see why anyone would want to opt for the Evolve MitraClip over open-heart surgery.  The MitraClip is a little different from a common test known as an angiogram in which a catheter is passed through the femoral vein in the groin up to the heart.  In this repair procedure, however, the catheter guides a clip to the mitral valve where the metal clip covered with polyester fabric is positioned over the leakage and brought down below the open flaps and back up, fastening the valve’s open leaflets together.  The manufacturer, Abbott, shows in a video here how blood still is able to pass through on either side of the fastening. 

Elizabeth Taylor got her MitraClip repair a year and a half ago, so it must have worked for a while.  Then about six weeks ago she was hospitalized with heart failure at Cedars-Sinai Medical Center in Los Angeles where she died with her family at her bedside.  For more on mitral regurgitation, see this NIH site.

Heart failure has many other causes.  High blood pressure can damage the lining of blood vessels leading to deposits of cholesterol.  Coronary artery disease causes heart attacks.  A heart attack kills part of the heart muscle, forcing the rest of the heart to work harder and in doing so, get large and weak. Only about half the people who develop heart failure have a weak heart.  In another cause of heart failure, the left ventricle becomes stiff and the heart does not fill properly.  And in some heart failure, the heart itself is normal but connecting blood vessels are not or a valve may be too narrow.  In all of these cases, a person is said to have heart failure because the heart and vascular system are not able to provide the body with the blood and oxygen it needs. 

The HeartSense Helpathon: Second in a series

Helping Each Other to Good Health:  Preventing Heart Disease

Brian Mossop trained to be a neuroscientist but then decided that writing about science was more fun and quickly became a well-known science writer.  If there is a genetic predisposition to athletic pursuits, Brian must have one because he started competing in sports as a preschooler and is a self-described “exercise fanatic”.  Whether or not he has a genetic drive to pursue athletics, he also has days when that motivation to exercise is just not there.  But with a family history of heart disease and experiencing what can happen to your body when you don’t exercise and eat right, he pushed forward with an intense exercise program, choosing running and Crossfit to keep his heart healthy. 

Running, biking and walking are all forms of aerobic exercise that increase your heart rate, build your heart’s endurance, and help muscle function in your legs and arms.  Crossfit is a program that includes resistance exercises and strength training that target muscles, building muscle endurance and the ability to respond quickly and more powerfully.  People with controlled heart failure can benefit from both aerobic and resistance exercise, but please avoid straining with heavyweight lifts and learn correct breathing patterns when doing resistance exercises. We will discuss in more detail strength training for people with heart problems in a future article in this series.

I am delighted to bring you this adventurous, disciplined commitment to healthy living in Brian Mossop’s guest blog post below. 

Why I Run

I’ve been a competitive athlete for as long as I can remember.  Um, wait, scratch that.  See, there was this period during the end of grad school and the start of my first postdoc, when I was completely burned out, and fell into some bad habits.  But let’s start at the beginning.

I started participating in organized sports at an early age, around age 4 or 5, according to my very proud mother, who beams with excitement when I ask her to recall sports stories from my childhood.  Personally, I think my parents just got tired of my incessantly asking them if I could play tee-ball, so they signed me up thinking my interest wouldn’t last very long.  But the trend continued, all the way through college, where I was a short distance sprinter – 50m, 100m, 4×100 relay – at Lafayette College.   

I stayed fairly active for my first years of grad school, but soon the humdrum of lab life caught up with me.  It started innocently enough, bailing out on a workout or two during the week when I just couldn’t muster the energy to change into exercise clothes.  Next thing I knew I was about 30 pounds overweight and none of my clothes fit.  I forgot where the gym was located.  My LDL cholesterol and blood pressure were in bad shape, both on the verge of requiring pharmaceutical intervention.

But the depressing blood work results, not to mention my expanding mid-section, lit the fire under me.  Several of my maternal uncles had multiple heart attacks – one of them was at the tender age of 35 when the first one hit – and this was one family tradition I didn’t care to follow.  

Instead of drowning my sorrows in pints of Ben & Jerry’s – an all-too-familiar trend during those times – I decided to start doing something crazy: road racing.

Being a sprinter, I had never done much long-distance work.  In the past, making it around the 400m track just once was an accomplishment for me.  Plus, my closest friends from college are hard-core distance runners.  And by that, I mean they are really, really fast.  Like a 2:30ish marathon fast.  Top 50 in the Boston Marathon fast.  Fast fast.  You get the point.  So getting into this road racing business was a bit intimidating.  I didn’t even tell my best friends what I was doing until shortly before my first race.  

I started out slow, running just twice per week, a sluggish mile or two at a time.  Week by week runs became easier, and I found myself starting to push myself to go further, and faster.  I started watching what I ate, making smarter choices on trips to the refrigerator.  As the months passed, I began feeling better than ever and had wrangled my waistline back to its proper diameter.  My annual physical revealed more good news, as my cholesterol and blood pressure were now held in check.

As I got into better shape, I once again started feeling the familiar, competitive itch.  I was then running about 25+ miles per week, and I thought signing up for an organized event would be a great way to feed my enduring desire to race.  Several half-marathons later, I still was unable to quell my inner adrenaline junkie.  No matter what kind of running workouts I did – 800m repeats, tempo runs, fartlek, you name it – I still couldn’t feel that rush of blood and emotion that is a sprinter’s life force.  

A co-worker told me about a new workout program she had gotten hooked on, called Crossfit.  Though I was reluctant to shelve the free-weight routines I’d been relying on since high school for what seemed to be just another fad, I decided to give it a fair chance.  

The Crossfit idea was simple enough: go to the website to find out the Workout of the Day, and do it.  The exercises were a mix of things like plyometrics, Olympic lifts, and bodyweight exercises (pushups, pullups, etc).  The amount of weight to use and the number of repetitions to perform were prescribed on the website for each exercise.  Contrary to most weight training methodologies, you got “better” by completing the workout faster, instead of boosting the amount of weight used, which gave a nice cardio burn throughout the session.  

At the time, Crossfit gyms were springing up all over San Francisco.  A new breed of trainers had turned old, converted warehouses into places where people could meet and work out together, making weight training into a team sport.  

For me, exercise has been a way to actively battle my family history of heart disease, while simultaneously holding my stress levels, and possibly even my cognitive ability, in check, as studies have shown the immense value of voluntary exercise on the brain.

It took quite a bit of trial and error for me to find the exercise routine that worked for me.  In the months before I got hooked on road racing and Crossfit, I tried it all: racquetball, swimming, the list goes on.  And so when I hear people become quickly discouraged with their New Year’s resolutions to get in shape, I try to help them discover the many, many ways to get the heart rate up.  

Getting back into a regular exercise routine was not easy.  I struggled quite often.  And I still have days where I don’t feel like going for a run.  But one thing to remember on the dark and dreary days: you’re not alone.  Every athlete, from newbies all the way up the chain to the elites, struggles with motivation from time to time.  

When my motivation tank is running on fumes, I usually do one of two things.  First, I’ll call up a friend and schedule some time for a nice, slow run with a running buddy.  Whether it’s a quick lunchtime trot, or a long weekend run, the small talk with your running buddy will make the time, and distance goes by much faster.  Second, I’ll start tracking my runs online using an exercise log like Running AHEAD, now in beta testing, or a cool gadget like Nike+.  These are relatively inexpensive, and provide a great way to keep tabs on my progress, and see how I’m improving each week.

Finding the exercise that’s right for you trigger those dopamine reward circuits in your brain, and will, eventually (I promise you!) turn exercise from a measly chore into your favorite hobby.