The 2010 Funky Heart (and Friends!) Tour!

September 10, 2009

The Funky Heart and his friends are fighting Congenital Heart Defects (CHDs) from sea to shining sea! Join us at any one of these events!

2nd Tuesday of Each Month, 6:15 PM: Broken Hearts of the Big Bend Family Dinner in the  St. Stephens Lutheran Church Fellowship Hall.

February 14, 2011, 6:30 PM: Paul Cardall in Concert, Cottonwood High School, Salt Lake City, Utah. Silent Auction 6:30 PM; Concert 7:30 PM. Purchase tickets HERE

Funky Heart in Columbia, SC! February 26, 2011: Congenital Heart Defect Conference at Riverbanks Zoo and Garden, Columbia, SC! Sponsored by Palmetto Hearts!

Funky Heart in Los Angeles! April 29-May 1, 2011: Adult Congenital Heart Association (ACHA) National Convention; Location TBA.

24 hours at Johns Hopkins

November 28, 2010

“Because your whole world can change in 24 hours.” – The Paper (1994)

Tuesday, November 28, 1944: Sometime during the evening of the 28th, Dr. Alfred Blalock places a telephone call to the Surgical Laboratory at Johns Hopkins Hospital. His Surgical Assistant, Vivien Thomas, has recently developed a surgical correction for the heart defect known as Tetralogy of Fallot, also known as Blue Baby Syndrome. The two men have planned for Thomas to teach Blalock the steps needed to successfully complete the surgery during an operation on a dog. Blalock has done the operation only once and many more teaching sessions are needed.

Blalock is calling with grim news: Earlier he had asked Thomas about the possibility of operating on 19 month old infant Eileen Saxon. Weighing only nine pounds and often cyanotic, the dusky blue color that gives this malady its name, she is deteriorating rapidly. At the moment she is so cyanotic that she is purple and is struggling for every breath. Dr. Blalock tells Thomas to meet with Elizabeth Sherwood, the operating room supervisor, first thing in the morning. Thomas has invented several surgical tools specifically for this operation and he is to make sure that they are available.

Thomas is stunned and reminds Blalock that he doesn’t know the operation very well. “But if you don’t get ahead of yourself, break it down into smaller and smaller steps as you work, it can be done.” It is one of the familiar sayings Thomas uses when he is teaching proper surgical procedure and for a moment, Blalock feels as if he is the assistant.

After Blalock hangs up, Dr. Helen Taussig orders him home. Blalock protests, but she reminds him that he plans to operate in the morning – an operation that could very well be emergency surgery. The hospital has his telephone number should he be needed during the night. At roughly the same time, Thomas and Blalock leave for their respective homes. Segregation is still prevalent at the time and Thomas leaves by a back entrance; neither man knows the other one has left.

Dr. Taussig spends the night on the ward; Eileen’s parents are also there. Although they don’t know it, this is an ominous sign: in the 1940′s, visiting hours rules were strictly enforced unless a patient was seriously ill.

Wednesday, November 29, 1944: Too nervous to drive, Blalock asks his wife Mary to take him to the hospital. She lets him out of the car in front of the towering Johns Hopkins dome. Dr. Blalock enters the building, walks through the rotunda (rubbing the toe of the Statue of Christ for luck, an old Hopkins tradition) and turns left. From here he exits the building through a side door, walks approximately 50 yards, and into the Harriet Lane Home for Invalid Children. Vivien Thomas enters the Hopkins complex from a side entrance and goes immediately to Elizabeth Sherwood’s office. Miss Sherwood knows nothing about Dr. Blalock’s plan to operate but immediately shows Thomas the selection of items that will be available to Dr. Blalock. Thomas adds custom-made clamps and needles to the collection. These needles are no more than 1/2 inch long. Thomas insists that the clamps and needles not become part of the general operating room supplies – they have been custom made for this operation only.

Blalock and Taussig examine the child and confer. Eileen has not improved during the night, and Taussig concedes that there is nothing else that she can do. She leaves the meeting as Thomas arrives, perhaps to return to Eileen’s bedside or for a quick trip to the Cafeteria. Blalock and Thomas discuss the upcoming operation. They go over some of the more critical steps, and also discuss “routine” points such as where the incision should be made. Thomas informs him that Miss Sherwood has promised that the large operative theatre will be available but needs to know when the operation will begin. Blalock decides that the operation will take place after the morning rounds, unless events dictate otherwise. He leaves to confer with Eileen’s parents and to conduct Rounds. Thomas did not normally participate in Rounds so he would have gone to the Surgical Lab, although he may have gone to his office. He calls Miss Sherwood and informs her of Blalock’s decision.

The operative team convenes in the Scrub Room annex connected to Room 706. Although first chosen at random, the majority of Hopkins’ early heart surgeries will take place here and the room will come to be known as “The Heart Room.” Dr. William Longmire and Dr. Denton Cooley will assist. An unknown person sets up a movie camera pointed at the operating room table; this film still exists in the Johns Hopkins Hospital Archives.

Blalock continues to discuss the upcoming operation with Thomas as he prepares for surgery. Thomas is not scrubbed in and has no intention to – he is not allowed on the Operating Room floor. He will be seated in the raised seats of the theatre, however. Helen Taussig will be in the Operating Room, even though she is not a surgeon. She’ll spend most of her time at the head of the table, monitoring the patient.

A few minutes before Eileen arrives, Blalock quietly asks his scrub nurse to find Thomas and help him get scrubbed in. As expected, Thomas is seated in the bleachers above the OR. Blalock also orders a milk crate and has it placed behind him. Thomas stands on the crate, peering over Blalock’s shoulder at the operative field.

The operation begins with a curving incision near the 4th rib on the child’s left side. With Thomas guiding him, Blalock gently works past the lung and cuts a path to the heart. The heart is small, dark, and obviously struggling. William Longmire later said “I remember watching him open the patient and just thinking it was impossible.”

Blalock works patiently, finding the Left Subclavian Artery and the left branch of the Pulmonary Artery. He places a clamp on the Subclavian to cut off blood flow – using one of the clamps designed by Vivien Thomas for this procedure – and cuts it. He then places two similar clamps on the left branch of the Pulmonary Artery. Making a small opening in the Pulmonary Artery, Blalock uses the tiny needles Thomas has prepared to sew the Subclavian Artery into the Pulmonary Artery. After double checking his work, Blalock removes the clamps. He is unable to feel blood flowing through the new connection.

Legend has it that Helen Taussig said “Al, the child’s lips are a lovely pink color!” The Johns Hopkins online exhibit about the operation states that the anesthesiologist said “The boy’s a lovely color now!” at a later date, during the third operation. Blalock’s operative notes comment that the circulation in the nail beds of Eileen’s left hand “appeared to be fairly good.”

The difficult segments are complete but the operation is far from over. Sulfanilamide (an antibiotic) is introduced into the incision and Blalock begins to close. He sews the soft tissue closed with silk sutures and is finally done. The operation has taken about ninety minutes. (CLICK HERE to perform the Blalock-Taussig Procedure yourself. Read Blalock’s operative notes here:  PAGE 1 PAGE 2)

Eileen is moved to the Recovery Room, where Dr. Henry Bahnson is responsible for her care. As one might expect, Blalock and Taussig look in on her often.  Bahnson’s opinion is that the little girl is still very blue but improves over time. Eileen’s mother comments “When I saw Eileen for the first time, it was like a miracle… I was beside myself with happiness.” Very little is known of Thomas’ movements after the operation. He is seen in Recovery and also in his Lab.

As the sun sets on the city of Baltimore, Eileen remains in critical condition but she is stable. The operation is a success, but in a few months it will fail and she will need another Blalock-Taussig Procedure, this time on her right side. She will die just before her 3rd  birthday.  The doctors determine that the surgery is more suited to an older child whose blood vessels have had a chance to grow. In early 1945 Blalock and Taussig co-authored a medical journal article about the first three procedures. Hundreds of patients would flock to Johns Hopkins Hospital to receive the life-saving surgery, even though the odds were long: an article in the February 17, 1947 issue of The American Weekly noted that 14 of the first 70 patients had died.

But parents noted that 56 of them had lived and were growing up, something that had never happened before. The era of Congenital Cardiac Surgery has begun.

A Cure for Heart Defects!

November 26, 2010

“I believe that this nation should commit itself to achieving the goal, before the decade is out, of landing a man on the moon and returning him safely to Earth.”
– President John F. Kennedy, May 25, 1961

 

On September 29, 2010, Fran Visco of the National Breast Cancer Coalition appeared in a video posted to YouTube. It contains a powerful message.

“We can’t count on hope as a strategy to end breast cancer. I’m giving up hope, because hope is not a solution. Hope will not end breast cancer; we need a plan, a goal… a deadline.”

What a statement… and what a shift in thinking! Think about what she is saying: HOPE CAN NOT CURE OUR DISEASE. Hope is a good and pure thing, a friend we hold close in our most desperate moments. Take note that she did not say “I am giving up on hope,” because she’s not. Hope is what keeps us going when the world crashes down around us. But we need to realize that hope alone can not fix defective hearts.

A popular phrase that you may have heard is “We will cure (chronic illness) in our lifetimes.” The problem is, all generations living with the chronic illness use that phrase as a rallying cry. Time moves on, the older generation passes away, but the phrase is still being used. Eventually, the urgency disappears. There is no real urgency for beating the disease… just an empty promise that it will happen “in our lifetimes.”

In the same vein, “Awareness” is not an endpoint for the Heart Defect community. What good is awareness if it does not bring people to take action? We are winning – the number of deaths caused by Heart Defects is dropping. The American Heart Association estimates that in 2005, 3,500 people died from Congenital Heart Defects. That’s the most current statistics that they have available, so the number may even be lower today. But that’s not acceptable. That’s still 3,500 of our friends, our families, our sons, and our daughters – dying each and every year.  Being “aware” of a Heart Defect isn’t enough, so perhaps it is time to redefine ourselves, and rethink everything we’re about, everything we are fighting for.

It’s time to declare war on Congenital Heart Defects. All out, bare knuckle, unrestricted mortal combat. Like Miss Visco said, there needs to be a plan, a goal, and a deadline.

THE PLAN:

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

THE GOAL: To eradicate Congenital Heart Disease.

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

So how are we going to do it?

I can’t answer that. I am not a doctor or a scientist; I have Bachelor of Science degrees in History and Political Science.  And to add to the challenge, we are going to have to do this all by ourselves. If we’ve proven one thing, it’s the fact that Congenital Heart Disease is an invisible disability and without a unified approach, we have no voice. For several years the Adult Congenital Heart Association (ACHA) traveled to Washington DC to lobby for a federal level registry of Congenital Heart Defects. Only after we united with seven other nationally recognized Heart Defect Support groups and formed the National Congenital Heart Coalition were we able to get legislation introduced in Congress and eventually inserted into the Patient Protection and Affordable Care Act.

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

In 1961, President John Kennedy challenged the nation to put a man on the moon before the end of the decade. Back then, we could barely get a rocket off the ground, much less think about going that far. Along the way we won some major battles and we lost some good people, but in July 1969 the Apollo 11 crew landed safely on the moon and came home.

We have to be willing to put everything we have on the table and draw that last card. It could all blow up in our face…but we could also hit the jackpot!

Let’s rise to the challenge. This is our Apollo program, our impossible dream.

Let’s go to the moon.

Coming up….

November 24, 2010

Thanksgiving break is starting a little early, but Adventures of a Funky Heart! will resume Friday (November 26) with perhaps the most important post I’ve ever written.

After that, I’ll take a break for the weekend, but you are invited back Sunday night, November 28. There won’t be a post until after dark (East coast USA time) but come on over. I’ve got an amazing story to tell you…

Kids are tough!

November 23, 2010

Kids are tough. They just take whatever life hands out and keep on keepin’ on. When I was at the University of Alabama at Birmingham (UAB) in 1977 for my second heart surgery, I met not one, but two perfect examples.

UAB had a playroom near my room, and it was the perfect destination. The “Adult” waiting room was right across the hall, so the folks would walk down there whenever the hospital room began to make them crazy. I’d go along too. I was 10/almost 11, and even though I was one of the older kids I could hang out and break up the boredom. Patients get a little bit crazy, too, you see. One of my first times down there I was trying to talk to one of the other kids – who wanted nothing to do with me – when this other little fellow ran up and asked “Mister – “

What’s with this “Mister? I thought.

“Mister, can you fix this for me?” I had no idea but I took a look at the toy he offered. Turned out to be nothing; someone had put the battery in backwards but he was too young to figure that out. Thirty seconds later the toy was running and I was popular! I could fix things, and that was an important skill to have.

A couple of days later I was in the playroom and in walked a Mother we had met. Her child had an unexplained illness and no one had figured out what it was yet. Billy (I can’t remember many names from that trip to UAB, I guess too much time has gone by. So we’re going to call this young man Billy) was feeling better, would we mind if he came down to the playroom?

Certainly! Everyone needs to get away from the hospital bed every now and again, bring him on down! She left, and in a few moments she was back with Billy.

Billy was up and moving around but he was connected to an IV pole. That’s an common sight, but the needle led to a tape covered area of his head. Holy Mackerel, this kid has an IV in his skull, but it didn’t seem to bother him much. The biggest problem was when he was playing and got too far away from the IV. His line would go taut and pull him back, and Billy would have remember to pull the IV pole along with him. If that had been me, I’d have thrown screaming fits whenever someone mentioned the words “IV” and “head” in the same breath. Holy Cow, kids are tough.

Another person I met was Phil (another made-up name, I hate to say). Phil was a six-year-old with a growth on his spine and was scheduled for back surgery about the time I was having my heart surgery. By the time I saw Phil again, the playroom was off-limits (possibility of too many germs) but it was still a destination. That first week of recovery I’d walk from my new room to the playroom, turn around, and head back to my room.

I was just starting back towards my room when Phil came into my view, riding a Big Wheel. He was having fun, tried to pull a wheelie… and went over, landing flat on his back. Right on his incision!

Youch! His mom came running over, yanked him to his feet, and snatched his shirt up. I expected the worst, but his incision looked just as healthy as mine. Not only was he not hurt, but Phil wasn’t paying mom any attention. He was looking to get back on his Big Wheel and try again! Unfortunately (or thankfully!) Phil’s racing career was over, per order of his mother.

Kids are tough… it’s the adults who can’t take it!

Walking shoes, Liquid Plum’r, and Cholesterol

November 22, 2010

There was a pretty big announcement at the American Heart Association’s Scientific Sessions 2010 meetings last week: the new drug Anacetrapib is very good at raising “Good” cholesterol (HDL) while at the same time lowering “Bad” cholesterol (LDL) with very little side effects!

Why is this important? (Part 1): Here’s a good way to remember the difference: HDL is Happy Cholesterol and LDL is Lousy Cholesterol. Lousy Cholesterol gunks up your blood vessels and causes blockages. Blocked arteries are official, certified BAD THINGS. Happy Cholesterol, on the other hand, eats Lousy Cholesterol and then drops it off in the liver, where it is processed out of the body.

Why is this important? (Part 2): Drugs don’t always work like you think they will. A few years ago there was a big clinical trial for a new drug that would also raise your HDL while lowering your LDL. Suddenly the trial was cancelled… a significant percentage of the trial participants suffered from high blood pressure and/or heart attacks. Some of them actually died.

Ouch.

So there was a lot of excitement when anacetrapib came through the clinical trial with acceptable results. Dr. John M. has a good post on the new drug, including how it is more like Liquid Plum’r. Or maybe Pac-Man.

We’re still a long way from this drug going to market, the next step is another clinical trial involving 30,000 people. But in a few years it will be available – and someone will promote it as “an alternative to exercise.”

In the words of the great philosopher, Mr. Bruce Hornsby, “…don’t you believe them.” A pill can not replace exercise, no matter how much LDL it gets rid of. Your heart and lungs are muscles – If you push them just a little past their optimal range of use on a regular basis, they’ll get stronger. If you don’t – if you sit on the couch and take your pill – they’ll slowly wear out. It’s a rule of life; you can’t stop it. We all age, but some of us do what we can to slow it down.

The new drug won’t be cheap. New drugs never are, there is too much Research and Development funding sunk into it. No one knows what the price will be yet, so let’s make a guess. The new anticoagulation drug Dabigatran will probably cost about $240 per month. That’s not taking into account any insurance plan you may use, but if you walked up to the pharmacy counter with your prescription and paid cash.

Using this as our estimate, a one year supply of Dabigatran would cost $2,800 per year. You can figure that Anacetrapib’s price will probably be somewhere in that range.

But one pair of good walking shoes will cost you $85. Shoot, let’s splurge a bit and get one of the more expensive brands. That will cost us $130. If we just use them for our high intensity walks, they’ll last a while. If we use them as our everyday shoes, we may need a new pair in a year. Cost of drug: $2,800 per year. Cost of shoes: possibly $260 per year, more likely to be less.

Exercise is cheaper than drugs – and a lot more fun!

Behind Those Doors

November 21, 2010

Karen Thurston Chavez is Co-Founder of the support group Broken Hearts of the Big Bend (BHBB) and a good friend. We met when I spoke at BHBB’s Congenital Heart Defect Symposium last year and we trade e-mails at least once a week, keeping up with each other and discussing the latest issues affecting the Heart Defect community.

Karen’s blog has a most unusual post you need to read – in September, she was able to shadow her son’s heart surgeon for a day at Shands Children’s Hospital in Gainesville, Florida. But then something she didn’t expect happened:

I figured I would sit in on conferences and consultations he had with families whose children were having, would be having, or just had open-heart surgery to repair their congenital heart defects.  I guessed that I would sit and watch while he handled administrative work. I was right. I did all those things.

I did not think I would step into his operating room.

So I’m sending you over to her blog for today’s post. Karen will help you get scrubbed in and then walk you into the Operating Room as Dr. Mark Bleiweis performs open heart surgery.

SHADOWING MY SON’S HEART SURGEON

Celebrate Red and Blue Day

November 19, 2010

“What sort of day was it? A day like all days, filled with those events that alter and illuminate our times…” – You Are There, 1953

November 29, 1944: Dr. Alfred Blalock took one final look into the incision. It looked right… he had been operating for years, surgery shouldn’t make him nervous anymore. But this operation did. He had completed this same surgery on a dog only once, and no one had ever tried it on a human before. Let this work…

“Watch for bleeding,” his assistant reminded him as he started to remove the clamp. Blalock nodded, ready to drop the clamp back into place if the new connection leaked. But not too hard, too much pressure and you crush the Pulmonary Artery; do that and you kill the patient.

His partner, Dr. Helen Taussig, stood near the head of the table. Heart surgery had been her idea, she had just as much riding on this operation as he did. Probably more – she had assured both him and the child’s parents that the theory behind this operation was sound. The little girl’s heart defect caused Cyanosis – she was literally suffocating from lack of oxygen. Taussig’s theory was to reroute a blood vessel to the lung and increase the amount of oxygenated blood available. Blalock’s assistant, Vivien Thomas, had designed the operation and tested it. All three of them had their reputations on the line.

And the irony of it all was if things went bad, he’d probably be the one to suffer least. Blalock was the Chief of Surgery, after all. Taussig was an almost deaf female doctor (who ever heard of such a thing?) and Thomas was a Black man who official job description wasn’t supposed to bring him anywhere near a scalpel, much less doing experimental surgery. If things went wrong, they would be the ones hung out to dry.

So let’s not allow things to go wrong, Blalock thought as he inspected his work again. “I’m removing the clamps,” he finally said.

Reaching into the open wound, he gently touched the new connection. “I can’t feel any flow,” Blalock said, disappointed. After a long pause, Taussig spoke.

“Al, the baby’s lips are a glorious pink color.” Stunned, the surgeon watched as the child’s blue lips slowly turned pink.

Before that day in 1944 heart defects were almost always fatal, usually during the first year of life. Occasionally a child was lucky enough to survive to late childhood or the early teens, but that was only under the best of circumstances. And that “lucky” child had no strength, no energy, and very little Quality of Life. Even after that first surgery (the Blalock-Taussig Shunt)  there was still only one operation, designed to relieve the effects of one heart defect. The odds weren’t good, but CHDers now had a chance. And sometimes one chance is all you need.

CHD Survivors, our families, and our friends celebrate November 29 as Red and Blue Day. Participating in Red and Blue Day is simple – just dress in red and blue clothing. You don’t have to donate any money (though if you choose to, your favorite CHD Support Group would be an excellent choice!) and you don’t have to volunteer to do anything. Simple as can be. If anyone compliments you on your good taste or your color scheme, just be prepared to explain why you chose those colors.

A Heart Defect is an Invisible Disability… many of us don’t even look like we have a health problem. Some of us are Cyanotic, but you have to look really close (and know what you are looking for) to see it. But November 29 is OUR DAY, so wear Red and Blue… and let’s stand out!

Run the Race

November 18, 2010

Wherefore seeing we also are compassed about with so great a cloud of witnesses…let us run with patience the race that is set before us. – Hebrews 12:1

Foot on the line; lean forward.

Ready…set…GO!

Out of the starting gate not with a blast, but with a whimper. Unusually enough, I can’t seem to get my feet under me, can’t find the rhythm. Instead of a smooth stride, I stumble and trip and almost fall at the 5/12th of a mile mark of the race. I’m losing – badly. I never expected to win, but I wanted to make a decent showing. Let everyone see that I gave my best.

But the crowd is really screaming, and they seem to be yelling at me. Yeah, if I were watching I’d be yelling at me, too. But no, they are cheering, and the worse my feet seem to tangle, the more they shout encouragement. Hey, I recognize some of these people… that’s Dr. Blalock! Vivien Thomas is next to him, shouting my praises as I struggle by.

I get my balance back – slowly – and soon I have a smooth motion going. Gotta pick it up, all I’m seeing is the backs of the other runners. Dr. Taussig waves at me as I pass.

My feet get tangled up again at mile 10 and I go down, coughing blood as I fall. Somehow I get back up – hard to do when your legs don’t want to do what you tell them. They’re working again – but still a little weak – by mile 11 and then I really start cooking. Steady and smooth, chasing the pack down. I’m not gaining that much, but at least I can still see them.

Then at mile 22 I fall flat on my face. I can’t even get up.

“Keep moving!” a little girl yells. “Never stop!”

So I’m dragging myself, pulling myself along with my hands, and this same little girl yelling at me to keep going, try harder, I can do it. She’s familiar, but I don’t…. Eileen Saxon. The first one of us.

Slowly I get to the point I can push as well as pull myself, then back to my feet and into my familiar half walk, half stumble. I get my stride back until mile 36, when I go down again. I can’t feel my right side at all.

“Come on, you aren’t going to let a stroke stop you?” another little girl asks. It’s Gracie. “Come on now, you cheered for me, I’ll cheer for you.”

But you lost, I think as I feel my energy start to drain away. I’m losing, too.

“I lost, ” Gracie says, reading my mind. “But I fought. That’s the important thing.” So once again I’m digging in, pulling along with one hand, keeping a forward motion and not much else. Slowly I get the feeling back in my right side, and then I am able to stand and shuffle, and eventually run.

I’m doing OK, had a bump and a bruise about half a mile back, but I just passed the 44th mile mark. I wonder who I will see next… and how I will react if it is one of the other runners I have met on this journey.

And I wonder how long this race is. The longer the better, and if I can help it, I’m not going to go down on the course.

I hope to cross the finish line standing.

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.

Backscatter Scanners and Pacemakers

November 16, 2010

As you may remember, I almost flew to Atlanta for the recent Heart Walk, but changed my mind when my parents decided to attend, too. While getting my gear organized for the trip I thought about the new “Backscatter” full body X-ray scanners being installed in airports: how do those things interact with pacemakers? The Transportation Security Administration (TSA) recommends that those of us with Pacer Power avoid the metal detectors, and since I got my pacer I’m not cool around large magnets. After all, the doctors use a magnet to set my pacemaker; it stands to reason that another magnet could scramble it! So I pull out my plastic card and tell the TSA agents that I have a pacemaker and request a hand patdown, and just avoid all that.

But what about the new scanners? Friend or foe? Not knowing, I called my pacer lab. The short answer: We don’t know.

The longer answer: There hasn’t been any testing done on pacemakers yet. It’s not really safe to get a human volunteer to test the scanner (“We don’t think anything well happen, Fred, but just in case… sign this release form.”) so the next best plan is a series of tests, usually involving calibrating a pacemaker, taping it to a mannequin, and sending him through a scanner – simulating what would happen to a traveler who happens to have a pacemaker.

If the pacer checks out, you run the test again, and again, and again, to see if going through the scanner multiple times will affect the pacer. Then you run the test yet again – with longer scans and higher radiation levels, to see if that affects the pacemaker. And you keep repeating these tests to eliminate the possibility of a fluke reading.

Wow, that’s pretty involved. It would probably be better if we could borrow a scanner for a few weeks, but I doubt that is going to happen. TSA like to keep things close to the vest, and I bet that goes double for their newest secuity tool. So I figure that the best thing to do if you have a pacemaker is not to risk it – just keep asking for a hand search.

Thankfully, my home airport is so small that they only have three gates. It will be quite a while before they get a Backscatter scanner!


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