A Cure for Heart Defects!

“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….

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!

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

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

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

Run the Race

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.

Balance

My Congestive Heart Failure (CHF) is worse.

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

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

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

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

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

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

Hammerin’ Hank hits a homer!

“It’s gone! It’s 715! There’s a new home run champion!” – Milo Hamilton, WSB-TV, April 8, 1974

The Atlanta Heart Walk was held not in Turner Field itself, but was spread throughout the parking lot. When Fulton County Stadium was torn down in 1997, the area was leveled out and paved – the old stadium is now the new stadium’s parking area. One small section was left standing: the outfield wall that Henry Aaron’s 715th home run cleared when he broke Major League Baseball’s lifetime home run record.

Gamecock Saturday

“It’s another Gamecock Saturday…”  – WIS – AM 560

The news came Wednesday afternoon that Bob Fulton had died.

For 43 years, Bob Fulton broadcast University of South Carolina sporting events. Although he also broadcast baseball and basketball, most fans will probably remember him best for his football broadcasts. I fondly remember listening to WIS-AM on many a “Gamecock Saturday”. Gamecock Saturday wasn’t just a radio broadcast, it was an event.  Everything began with a two-hour pregame show as Gene McKay and his partner analyzed the opponent, ran down the injury list, and checked on scores from other games across the nation. The pregame show was broadcast from the stadium parking lot with thousands of fans nearby. Whenever arch-rival Clemson University was mentioned, Carolina fans would answer BOOOO! The catcalls turned to cheers if Clemson was losing their game.

The pregame ended about ten minutes before game time and then Bob Fulton’s voice brought the entire state into Williams-Brice Stadium. I was one of the far away fans – I could be raking leaves or sweeping the carport, it didn’t matter. If it was fall, my body was working but my mind was at the game.

A trip to the South Carolina State Fair when Carolina was playing at home was a double treat. Williams-Brice Stadium is directly across the street from the fairgrounds; you had to get there early if you didn’t want to sit in traffic all day. Unusually enough, you didn’t have to bring your radio. Every third person seemed to have a transistor radio pressed to their ear, and you could hear Bob Fulton broadcasting no matter where you were. Occasionally you might have to ride the Ferris Wheel and try to catch a glimpse of the scoreboard, but not often.

And then you’d hear Bob utter those magical words – “Touchdown, Carolina!” – and the stadium would erupt in cheers. State Fair strangers would raise their index fingers and shout “Go Gamecocks!” to each other. The sun seemed just a little brighter, the day a little warmer, and it was a great day to be in South Carolina.

Fulton retired in 1995; a few years later WIS-AM lost the contract to broadcast South Carolina football and the Gamecock Saturday tagline was retired. Carolina still plays football, of course, and we still have the State Fair, but it just doesn’t seem quite the same. The days of my youth have slipped by, and now Gamecock Saturday exists only in my mind.

Thanks for being such a large part of it, Bob.

2010 Atlanta Heart Walk: The big kids!

Here’s a few of the Adults with Congenital Heart Defects at the 2010 Atlanta Heart Walk! All of us are patients at Emory University Hospital’s Adult Congenital Cardiology program! (Add one to the total – I’m holding the camera!)

And these are only a few – I filmed this not long after the event officially started and things began to pick up. I think that in total, 30 to 40 Adult CHDer’s were there! An entire group came storming in together (reminded me of the US Calvary coming to the rescue!) and I quickly lost count.