Archive for the ‘American Heart Association’ Category

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.

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Hammerin’ Hank hits a homer!

November 11, 2010

“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.

Got what you need?

November 2, 2010

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

“Do you feel up to it?” he asked.

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

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

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

Got your water bottle? Check!

Wearing comfortable shoes? Check!

Got your Cardiologist? CHECK!

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

Field Trip!

November 1, 2010

“Any of you guys up for a field trip?” my Adult Congenital Cardiologist, Dr. Mike McConnell, asked at the Atlanta Heart Walk.

Most of the patients said yes. “Where we going?” I asked.

“Oh, we’re just heading over to the Sibley tent,” McConnell said, pointing. “Just over there.”

Our “field trip” was a short one, only about 100 feet away. We walked up to a tent about an equal number of adults and children with a couple of people in STAFF shirts. The sign read

Children’s Healthcare of Atlanta/Sibley Heart Center

“Hi, guys!” Dr. McConnell said. “I brought some of our Adult CHD patients over. We want you to grow up to be just like these people.”

I met three or four of the Cardiac Kids (I didn’t have any of my Lucky Coins to give away! What a let down!) and one young man who was really shy. He wouldn’t speak to me, he held on to his mother’s neck and hid his face.

“Do you have a special heart?” I asked, trying to draw him out. Very reluctantly he nodded yes.

“I do too! You wanna see?” I unbuttoned the top two buttons of my shirt – not going any further on a 42 degree morning – and bent over to show him my scar.

“He’s got a scar just like yours!” his mom said. But my man was still close-mouthed, he wouldn’t tell me his name… and he lied about his age!!

“How old are you?” I asked. “Six.”

“You aren’t six!” His mom laughed. “Try again!”

“Two.”  Mom rolled her eyes. “Noooooo! He’s four!” During our conversation I learned that the little fellow has Dextrocardia – his heart is “flipped” in the opposite direction. As I understood it, most of his other organs are flipped, also. But it was obvious that he was shy, and I was not someone he knew. So mom and I talked doctors for a moment and then I said goodbye.

I’m sorry I never got your name!

2010 Atlanta Heart Walk: The big kids!

October 31, 2010

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.

15,000 people

October 29, 2010

“Glad to be here, happy to be alive.” – End of the Line, The Traveling Wilburys

15,000 people have registered for the Atlanta Heart Walk! Wow!

And my original plan was to just take a quick flight down to Atlanta. I’m glad I didn’t – not with supicious packages being found on various aircraft today. For those of you who may not know, Atlanta is home of the busiest airport in the world. I can’t imagine how crazy it is out at the airport right now.

Dreams of a Funky Heart

October 26, 2010

Beginning to get things together for the trip to Atlanta. The weather is predicted to be a low of 39 Friday night (Brrr!) with a high of 70. (No, I still do not like cold weather!)

And yes, I am smart enough to realize this is an American Heart Association event, and I do understand that the Heart Association does not support Heart Defect causes very well. That’s not the point. Emory University Hospital is a major sponsor and has entered a team; my Adult Congenital Cardiology group is based at Emory and they have entered a “mini-team”! We’ll have bandannas to mark us as CHD survivors, parents, and healthcare professionals. We’ll be well represented!

And I signed up for a Survivor’s cap, so I’ll have another hat to add to my collection. That may not be a good thing, I already have more hats than I have heads to wear them on. That will just thrill Momma!

It’s not about the hat, or the walk, which group I belong to, or even who is sponsoring it. It’s really about going and participating and being counted. Because when I was a little fella, I grew up thinking that there were very, very few kids around with a broken heart. The American Heart Association (back in the days when they were the only resource for any information on the heart) published a book titled When your Child has a Heart Defect. They only listed TEN different defects – I was too young then to realize that they had grouped several of them together. All of the defects of the blood vessels were grouped together, and the structural defects were grouped into Right Atrium Defects and Right Ventricle Defects. Add to that fact that there was very little known about left-sided heart defects in the early 1970’s, and as a result not many defects were covered. So the way I understood it, there were only ten different defects… there couldn’t be that many people who had one.

That “logic” made sense to me back then. So maybe by going, some Cardiac Kid can see me, and all the other adults living with broken hearts, and realize there are more out there than he/she knew about. And perhaps they will realize that they can beat that broken heart.

A Funky Heart can dream, can’t he?

Don’t you let my chest be hurtin’!

September 28, 2010

Another gem from the files of Dr. Wes:

The doctors and staff of Vanderbilt Heart and Vascular Institute in Nashville, Tennessee are a crazy bunch!

The Nashville Heart Walk (sponsored nationally by the American Heart Association) is coming up on October 2nd, and Vanderbilt Heart is the local sponsor. They could have put an ad in the paper, a few radio ads, and even a TV commercial or two. All that has been done before, and it works. Years of advertising have proven that.

But Nooooooo…. the Vanderbilt team created a MUSIC VIDEO!

Parading down Peachtree!

July 11, 2010

I’m heading back to Atlanta!

And no, this is not for my usual check-up – though I will have one of those in August. This time I’ll be heading down on Halloween Weekend for the American Heart Association’s annual Heart Walk! Emory University Hospital is putting a team together for the walk and my docs in the Adult Congenital Heart Defect Clinic are gathering a “Mini-Team” of their patients. So I was asked if I could attend and unless something comes up, I AM IN!

Good medical care by Adult Congenital Cardiologists is so very important to someone with a Congenital Heart Defect (CHD).” Regular” Adult Cardiologists can’t handle us: they are trained to take care of patients with clogged arteries, too much Cholesterol, or recovering from heart attacks. We need a Cardiologist who is trained to take care of an adult with a CHD, and Emory is one of the few places in the United States that offer this service.

So if you are an Adult CHDer in the Atlanta area (or about to become one!) register for the heart walk and join us at Turner Field on Saturday, October 30, at 8:00 AM!

GAMECHANGER

July 10, 2010

You won’t see many Saturday editions of Adventures of a Funky Heart! But then again, I don’t find important news like this every day:

…as the American Board of Internal Medicine voted unanimously for the Adult Congenital Heart Disease (ACHD) sub-specialty to be approved for board certification – the American Board of Pediatrics had previously signed-off on the new sub-specialty.

(Emphasis mine)

As I have mentioned before, seeing an Adult Congenital Cardiologist is critical to the care of a person with a Congenital Heart Defect. Adult Cardiologists, for the most part, aren’t very familiar with congenital defects. They are trained to deal with the problems that develop in a healthy heart as a person ages – clogged arteries, Cholesterol problems, and heart attacks. Adult CHDers won’t have those problems – or they will manifest themselves differently than would happen in a “normal” heart. So we need to be seen by an Adult Congenital Cardiologist.

But there are no Adult Congenital Cardiologists – not really. We do have a small group of people who have the experience needed to care for Heart Warriors, but there is nothing on paper. My doctor, for example, is Co-Director of the Adult Congenital Cardiology program at a major hospital…. but his license says he’s a Pediatric Cardiologist. And at one time he was; he just kept following his patients for as long as they needed him, and he’s “grown up” with the rest of us.

Since there are no “official” Adult Congenital Cardiologists, what does the approval for board certification mean? Simply put, there will be licenced, certified, diploma carrying doctors who can care for us in the future. Because now, it is going to be official.

There is going to be training for Adult Congenital Cardiology. (There already is at Mayo Clinic.)

There will be an oversight group.

And there’s going to be a test – a test you have to pass before you can legally claim to be an Adult Congenital Cardiologist. (I am not sure about what the plan is for the people already working in the field, such as my doctor. Usually there will be a way for them to be “grandfathered” in – have a certain amount of experience and pass the test, and you are board certified.)

Things won’t change overnight – Adult Congenital Cardiologists will still be few and far between, at least at first. If we’re getting good care now, it probably won’t pay for us to drop everything and go running off looking for a new doctor. But for the Cardiac Kids who are growing up, there will be more and more doctors able to take care of you after you become an adult. And hopefully along with the new certification program, doctors will work on a transition program. So Pediatric Cardiologists can help their older patients move on to adult oriented care. Because I’ve visited Pediatric Cardiologists before, even when I was in my 30’s. I’ve tried to get my adult body into those tiny chairs – the ones so low that your knees are level with your eyeballs.

It’s a great day – everybody wins. But the people who will benefit the most are the Cardiac Kids who aren’t quite here yet.