Archive for the ‘Heart Warrior’ 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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Heart Defects and the 2010 Midterms

November 8, 2010

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

On the cutting edge

November 5, 2010

Do you think my child needs one of those medical information bracelets? He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Yes, I would certainly get a Medical Information bracelet. I personally use MedicAlert, because you aren’t limited by whatever you can squeeze onto the bracelet. MedicAlert is a little more expensive – you have to pay for both the service and the jewelry – but you can have so much more information. I don’t just have a heart defect, I’m also in Heart Failure, you can’t read my pulse, my blood pressure, or give me an injection in my left arm because of my Blalock-Taussig shunt, and I take a small bucketful of medication every day. A “bracelet” that listed all that would be as long as my arm! (just try getting it through airport security!) With the MedicAlert bracelet, you discuss your detailed health information with a nurse over the phone and your bracelet comes with a telephone number and a numerical code. If something happens and you can’t speak, emergency personnel can call the number and enter the code, and they will have instant access to all of your information. Most of their bracelets are waterproof, so you can wear them in the shower – after all, it can’t do you much good if you have passed out in the bathroom and your bracelet is lying on your bedside table.

The Medical ID bracelet is important and could save your child’s life… but that isn’t the reason for today’s post. The second part of that statement made my hair stand up: He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Holy cow! Read this carefully, it is very important that it be understood: A heart defect can not be fixed. The word “fixed” implies that it is good as new. It isn’t. A heart can be repaired through surgery, which means that it can be made to function – perhaps not in the normal manner, but it is functional.

It is hard to believe that there are still doctors who tell Heart Parents that their kids are “good as new!” They used to tell them that, back when I was growing up – because they didn’t know any better. There weren’t that many Cardiac Kids around, so no one really had any idea what the future held for these children. But this child had been born with a critical health problem, had survived a delicate surgery, and would get better. He or she might not have as long or as full a life as the other kids, but we had won this battle. Now go, get out there and enjoy your life! And for years that was the common practice, because kids with heart problems didn’t live as long as other children. As an example, Cardiologists at Johns Hopkins Hospital told my parents that if I needed a second operation, it would probably have to happen ten years in the future. My parents asked what kind of surgery I would need, and after a long, uncomfortable pause the doctors admitted that they didn’t know. “That operation probably hasn’t been invented yet.”

But then something totally unexpected happened: Cardiac Kids grew up! As we grew, we had more heart problems – some of them related to our original defect, and some of them new. Doctors had new tools they could use to help us out, either a new drug or a better surgery. They could do a lot more with Catheterizations, too. And while we were proving that we could grow up, doctors were discovering that those heart problems were still popping up, sometimes years after we had been “fixed.” And their thinking started to change.

Today, most Cardiologists will tell you that your child’s heart has been repaired – and he or she will always need specialized cardiac care. Their heart is misshapen, blood vessels run the wrong way, it has holes where there shouldn’t be any, and has been altered by surgery. Even after they grow up, Heart Children will always have to make allowances, take medication, go see their Cardiologist, and stay on top of their health. And they will have to do this forever – because even though their heart is functional, it isn’t normal. No it isn’t fair, but this is the way it is.

And if your Cardiologist is telling you your child is “fixed”, you seriously need to consider finding another Cardiologist. Because this one is living in the past.

And Cardiac Kids live their lives right on the cutting edge of medical science. We always have, and we always will.

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.

Your Choice (My Answer)

October 14, 2010

Yesterday I asked Funky Heart! readers the question Given a choice, would you devise a cure for Congenital Heart Defects, or prevent them? To make it a little bit more difficult I added a stipulation: Your choice would have no effect on the other group – developing a cure will not prevent new cases from occurring; preventing heart defects will not cure those who already have them.

The question generated a lot of debate and discussion (as I hoped it would). But what would I choose to do? The answer might surprise you: I’d choose to prevent Congenital Heart Defects.

Preventing all future heart defects would isolate those of us who already have them… the need for Pediatric Cardiologists would drop as would the need for surgeons with CHD repair skills. You can assume there would be the need for a number of surgeons as CHDers could easily need heart operations later in life, but perhaps not as many as before. The number of Cardiologists would also decline, slowly – there would be a need to serve the current number of patients but that would drop as the patients begin to age and no new cases occur.

Older Heart Warriors would have to increase their efforts to inform and educate younger patients and their families. Not being boastful, but this would be the perfect job for an organization that I am a member of, the Adult Congenital Heart Association (ACHA). We’re already working toward a similar goal: adolescents with a heart defect tend to fall away from good cardiac care as they reach adulthood. They no longer visit their Pediatric Cardiologist; nor have they found an Adult Congenital Cardiologist. A good percentage of them may not even realize that they need an Adult Congenital Cardiologist.

The ACHA is working to prevent this from happening, to makes sure CHDers get good care all of their lives. Currently the Bethesda 32  report outlines care guidelines for the Adult Congenital Heart Defect patient and the ACHA’s Vision 2020 Project is a program designed to provide a seamless transition path – from Pediatric Cardiologist to well-trained, competent Adult Congenital Care Cardiologist without a break in care.(Bethesda 32 may be a name you are not familiar with. Every year, experts from the American College of Cardiology meet in Bethesda, Maryland to devise proper care guidelines for a segment of cardiology. The 32nd time they met (the year 2000), they devised guidelines for the care of adults born with a Congenital Heart Defect. You may not be familiar with the name, but the Bethesda 32 Report is very important to the CHD Community. You can read a good summary by CLICKING HERE.)

In the fictitious world we’ve created – one in which all new CHDs can be prevented – older Heart Warriors would have to step forward. We’re the voice of experience, we’ve literally been there and done that. And in this brave new world, we’re a lot more important. Now, we’re going to have to be teachers – teaching the younger generation how to take care of themselves, what to do and what to avoid. And we’re going to have to help each other out, too… the number of Adult Congenital Cardiologists will also begin to drop. After all, in this world where CHDs can be prevented, why specialize in a field that in time, will no longer exist?

This will cause problems, but I believe they can be overcome. We’re all in this fight together, and as Benjamin Franklin said, “We must all hang together or surely we will hang separately.”

Your choice

October 13, 2010

It’s going to be a very busy day for me – I’ve got a therapy session and several other errands to run. I’m leaving early, and could be out late. So today’s post is a question:

Given a choice, would you devise a cure for Congenital Heart Defects, or prevent them? Your choice would have no effect on the other group – developing a cure will not prevent new cases from occurring; preventing heart defects will not cure those who already have them.

Give your choice and your reasoning in the comment section.

Second Hand Heroes

September 24, 2010

We’re not your classic heroes. We’re the other guys. – Mystery Men (1999)

The other day I discovered a Facebook based Heart Defect group engaged in a pointless mental exercise: They were listing celebrities that are connected to the CHD Community in some way that they feel should become a “Congenital Heart Defect representative”. Once that happened, “awareness” would be raised, money for research would come pouring in, and we’d all be saved.

Oh good grief.

I’ve seen this happen before; the group concentrates its efforts on recruiting that one big megastar and ignores the people who are actually doing the job. Because true advocacy for an issue is difficult work. You don’t just stage a few events, look good for the camera, and recite the proper sound bites. It takes time, and the job is detail oriented grunt work. The i has to be dotted and the t crossed correctly and that is your job. Long hours, very little sleep, and the “pay” is a pittance, if anything. You do this because you believe.

And by the way – if all you are doing is “raising awareness”, then you are not helping. That young mother doesn’t know Heart Defects is the most common birth defect… and she doesn’t care. What she does know is that her child is very sick and the doctors are throwing words at her she doesn’t understand.  She wants someone who can explain this to her in simple English and give her some hint of the future. And even if the future is dire, she wants to talk to someone who will tell her the truth, and gently let her know that sometimes its OK to say goodbye.

I’m honored to know people like this and count them as friends; I’ve also shared some of their stories on Funky Heart! over the past two years. You probably haven’t heard of these people anywhere else. They don’t mind; because they aren’t seeking personal glory.

The most “famous”  Heart Warrior I know might be Heather, a CHDer who saw an ad in a magazine for a TV show seeking women with heart disease. From the wording of the ad Heather realized they were looking for people with Acquired Heart Disease and ignoring CHDers. Heather got in contact with the show producers and gave them a piece of her mind – and as a result, appeared on the TV show How to Look Good Naked!

Then there is George, a retired doctor with Tetralogy of Fallot who spoke at Lobby Day 2010. I always thought George was kind of reserved, but I found out he just waits until the proper moment. When he got through speaking we were ready to tear the walls down! “One day, Congenital Heart Defect survivors are going to live to be eighty, ninety, and even one hundred years old,” he said. George is also doing his part to keep Heart Warriors going – During Lobby Day he took a young adult/older teenager under his wing. Near the end of the day George told him “Remember what we’ve done here. One day this will be your job.”

Karen T. Chavez and Kim Rooks serve as Co-Directors of the Broken Hearts of the Big Bend. Heart Defect Awareness isn’t always the answer, there are times when what is needed is Education and Support. If you have a Cardiac Kid in the Tallahassee (Florida) area, Broken Hearts members can walk you through what may come next – and be right there with you, lending a helping hand when you need it. Why? Because we’ve all been there.

Colorado’s Amanda Adams has a Cardiac Kid; when he was born she could find very little information about his defect and almost no support. Frustrated, she decided that no mother should ever be in such a situation… and began the support group Hypoplastic Right Hearts.

Amy Basken is into everything – right now, she’s on the Advocacy Staff of both the Adult Congenital Heart Association and the Children’s Heart Foundation; serving as the National Advocacy Coordinator for Mended Little Hearts; and serves as Chairperson of the National Congenital Heart Coalition. She does all this “because I am a mom of a kid with a heart defect.”

A former teacher, Amy Verstappen‘s health deteriorated after the birth of her daughter. Unfortunately she had some doctors we were not familiar with Congenital Heart Defects in Adults and they almost sent Amy for a heart transplant! Thankfully Amy found Cardiologist Dr. Carol Warnes. Dr. Warnes saw the X-ray, knew what she was looking at, and got Amy what she really needed – a valve replacement. After the surgery this same Cardiologist challenged Amy to do something about the adults with CHD who were not getting good care. Her journey has taken Amy out of the classroom to serve as President of the Adult Congenital Heart Association.

And not to be forgotten is the late Jim Wong, a PhD who lived and worked on the West Coast. Jim’s training was in Chemistry, but when it came to learning about heart defects he just wanted to know as much as possible… and he never hesitated to share what he had learned.  He often traveled to Washington to serve on a patient advisory committee for the National Institutes of Health, and was at every ACHA event I attended until he was too ill to attend.

Fifty-four years old, Jim was one of the older CHD survivors, and grew up in the days when CHDers were X-rayed, scanned, and fluoroscoped as much as possible. A lot of older survivors pass away after a bout with cancer, not because of their heart. There is currently no medical evidence to prove this, but one theory contends that absorbing all that radiation while they were young leaves older Heart Warriors more susceptible to cancer.

Jim Wong died of cancer earlier this year, perhaps as a result of all those x-rays. I like to think he died the way he lived – helping others learn about defective hearts.

What is a Health Registry?

September 19, 2010

Before Adventures of a Funky Heart! began I took part in Lobby Day 2007, sponsored by the Adult Congenital Heart Association (ACHA). This was my very first Congenital Heart Defect (CHD) Advocacy effort, traveling to Washington DC to meet with other adult CHD Survivors and to lobby Congress for the passage of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on paper.

So ACHA members (along with a few other CHD Advocacy groups who have joined the fight) keep pounding the pavement in Washington, doing the grunt work needed to obtain funding for the Congenital Heart Futures Act and the registry it contains. But even though we’ve been doing this for nearly four years, the question is often asked: What exactly is a registry? And I’ve even gotten some strange comments, such as the person who insisted that they were not going to turn over their personal information, no matter what. So let’s try to clear up some misconceptions.

A Health Registry can best be described as an Excel spreadsheet: a database of facts and numbers. Fill the sheet with data, apply the correct sorting formulas, and you can learn a lot of information. Obviously, the more data you have, the bigger the pool of information you have to make the calculations and the more accurate they are. (My favorite college football team, for example, has won two games this year and lost none. That limited information points to a undefeated season and a National Championship. Even though I am pretty certain that won’t happen, that’s what the statistics predict.)

No one has to give any identifying information to be part of the registry. That would make it nearly impossible to keep track of anyone, especially women; ladies tend to take the last name of their husband when they marry. I’m not who I say I am either – most of you know me as Steve, but that’s not my legal name. I don’t sign an official document with Steve and it is not the name on my ID or my credit card. You could overreact and have a separate entry for every variation of a name, but that would give you too much information and dilute the results. It would be much easier to give everyone who is eligible to enter information into the registry a code number that will follow them for their lifetime.

The registry would be limited to adults at first. Why? it doesn’t sound fair, but we’ve been there and done that – what better group to use to get results right away. We’ve been through the childhood surgeries, the medications (some of which don’t exist anymore, because we proved they don’t work) and we’ve made it. Get the data from a couple of hundred adult CHD survivors into the registry, and you can begin to see some preliminary trends. And each addition makes the data more accurate.

So once we have this registry up and running, what can we learn? All kinds of useful information! The Centers for Disease Control (CDC) currently produces a work known as the Atlas of Heart Disease Hospitalizations Among Medicare Beneficiaries. This is a good example of a Health Registry, and the data is overwhelming. You can order a printed copy, download it as a .pdf file, and even view a series of interactive maps. (If you look up the South Carolina map, you’ll find that White men aged 65 or older with Heart Failure were hospitalized most often in the Northeastern part of the state – the border counties from Chesterfield County to Horry County. Data that detailed is priceless.)

What else could it tell us? Dr. Wes recently published results gleaned from an ICD Registry. Click the link and read what the registry revealed – the amount of information is staggering. Even though the plan is to gather information from adults with a heart defect at first, the registry is not exclusive and will benefit the entire CHD Community.