Archive for the ‘Adult Congenital 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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Grunt Work

November 7, 2010

I was in Philadelphia last April, helping out at the offices of the Adult Congenital Heart Association (ACHA) as they prepared for Lobby Day 2010.  On Lobby Day ACHA members – joined by members of the Children’s Heart Foundation and Mended Little Hearts – gathered in Washington, DC to visit the US Capitol. Our goal was not a sight-seeing trip, but to visit our legislators and convince them to fund Congenital Heart Defect provisions of the new healthcare law.

Knowing the ACHA office would be swamped with work (we had a total of four people in the office at that time) I volunteered to come to Philadelphia a few days early and help out any way I could. Unusually enough, “any way I could” turned out to be…

…. copying, sorting, and stapling.

Wow – that was a classy assignment there, Steve. They must not have needed that much help, after all!

Hardly. The ACHA staff was still setting up appointments with the legislators or their staff when I arrived. 48 hours until we left for DC; 72 hours to Lobby Day, and things hadn’t fallen into place yet. When we weren’t making appointments we were on the phone with our Advocacy Director working out final details. There was also a small crisis with the host hotel that wasn’t resolved until the last moment.

Making legislative appointments for 100+ attendees, smoothing things out with the hotel, working with the Advocacy Director to make sure things were just right… I don’t know how to do any of those things. So I was copying, and folding, and sorting, and stapling – so that the people who do know how to do those things didn’t have to worry about it. Or stop what they are doing to do it.

It’s “grunt work” – the repetitious, mindless type of job that no one wants to do. Everyone there could have done it, but they had skills that I don’t have, so I did the job. My best guess is that I handled 500+ separate sheets of paper. If you attended Lobby Day 2010, your informational sheets were assembled by me. (Don’t worry, I washed my hands!)

This is what advocacy for any worthwhile cause is – the willingness to do the little tasks, the grunt work, the behind the scenes activities that makes everything flow smoothly.

Cheer Up!

October 7, 2010

It’s been a rough week for those of us with a Congenital Heart Defect, and things have been pretty gloomy here at Funky Heart Central. But a few days ago a friend took a photo and added some text. After it was printed, she and her husband signed it, slipped it into an envelope, and mailed it to me. It arrived today and things are beginning to look brighter! (Click Photo to Enlarge!)

Thank you, Amanda and Jim!!

 

Denver Congenital Heart Walk 2010

 

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.

Road Trip!

August 24, 2010

GREETINGS FROM ATLANTA!

I’m in town for a scheduled checkup with my Cardiologist – tomorrow morning at the Adult Congenital Cardiology Clinic at Emory University Hospital. I’ve got to get on the right page – they’ve recently started calling the Clinic the EACH Center (Emory Adult Congenital Heart). That’s ok with me… they could call it the Greater Atlanta Earthworm Racing League if they wanted, they’re still number one in my book.

This is a routine appointment, scheduled months ago, but I have a feeling it could be a bit more detailed than usual…. it was planned before my fall. So I’m betting that I’ll be scrutinized a little closer than I normally would. That’s fine, and will really set my mind at ease.

I really can’t say enough about the Emory team – they keep me going. Not long after I was released from the Emergency Department in Houston and returned to my hotel room, I sent an e-mail to my Cardiologist and the unit Nurse Practitioner telling them what had happened. Within a few hours I received an e-mail back from both of them. My doctor was pleased at the level of care I had described, and told me to keep him informed. The NP had a question: Had I really tripped? Was it possible that I had blacked out? That could signal a larger problem.

Nope…. I tripped. I didn’t just hit the bag and go down, I lost balance and did a stutter-step or two before falling, so there was no question about that. I had fallen flat on my chest, too – right on my pacemaker. My cell phone was broken in the fall, could the pacer have been damaged, also? It’s certainly a lot more important to me than a cell phone! I called the pacer lab and they checked my pacemaker over the telephone right then…. and called with the results two hours later. It was fine, and my leads were functional, too.

So not only are they good, they can be fast when you need them!

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.


It’s not in my chart

June 8, 2010
REMEMBER: Grand Rounds hosted here on June 15! Entry guidelines are HERE
This post is not mine – I found it over at Life in the Fast Lane, a medical blog based in Australia. Also, in the original, the patient suffers from Crohn’s Disease. I’ve changed parts of it to reflect the thinking of someone living with a Congenital Heart Defect.
When you come into my hospital room, you need to know the facts of my life
that there is information not contained in my hospital chart
that I am a historian and a writer
that I wanted to teach when I graduated college
that I love life, beauty, travel, eating, Horatio Hornblower, Sherlock Holmes, the theater, movies, walking, my dog, and my parents
that I have been a member of a chronic illness group for four years
that I once thought I was the only one with a heart defect, or one of a very small number
that my girlfriend is someone just like me, because we automatically understand each other
When You come into my room, you need to know the losses of my life
that I was born with a defective heart and no one thought I would live this long
that I have been hospitalized more than a dozen times
that I am chronically ill, and am seeking healing, not cure
that I have to limit my sodium and keep track of how much I drink
that I can “fake it ’till I make it” but sometimes have no energy left at the end of the day
that I have a certain item of clothing I wear to every doctor’s appointment because I think it brings good luck
that I look up area hospitals before I travel… just in case
When You come into my room, you need to know my body
that I am afraid of medical procedures done at night …
I can’t sleep in a hospital, I often wake up crying
that I know when something just isn’t right, even if it isn’t recorded in my chart …
that I am on more than 10 pills each day
that I hate doctors who confer outside of my room; I worry that they are talking about me and the news is grim
that sometimes this body seems battered, old, vulnerable, tired … but still me
that I live by medication
that I live by technology
When You come into my room, you need to know my fears
that I am emotional … a fully functioning feeling person
that I am scared of the word “surgery”
that I once felt I could not breathe in recovery
that I have occasionally lost confidence in my body
that any new symptom scares me
that I am occasionally angry at life’s unfairness
that I worry about the future
that I am anxious about aging and how I will cope
that I long for one perfect day, only one symptom-free 24 hours
that there are times I want to give up
When You come into my room, you need to know my mind and my spirit
that I sometimes wonder “Why me?”
that I sometimes wonder what my life would be like if I were “normal”
That I sometimes wonder if I would be who I am if not for my bad heart
that I have faith, lose it, and regain it – all in a few moments
When You come into my room, you need to sustain my hope
You need to know that I believe love wins over hate; hope over despair; life over death
that I hope against hope
that I pray and believe prayer heals
that some days I am able to make meaning of suffering
that I am more gentle, more compassionate, better with dying, more loving, more sensitive, deeper in grief and in joy
When you come into my hospital room, promise me presence
Sit at my ‘mourning bench” if you are my physician
listen to me, talk truthfully to me
you need to know all this if you want to heal me
And always tell me the truth – unvarnished
because I know that I will never be cured
and support my hope
that tomorrow there may be new medicines and new surgeries
and that today you care deeply
that you will do your best
promise me a healing partnership
keep hope alive
it is all I have to fight with.
Amen, and Amen;

Perspective

May 19, 2010

I’ve worn my Kryptonian at Heart T-Shirt several times, but I have noticed that it has gotten different reactions from different people. In case you forgot, fellow CHDer Jason saw this shirt at a comic convention and just had to have one. When I saw it, I had to get one too.

The interesting thing about this shirt is the reaction you get. I wore it one day while hanging out with a group of heart-healthy friends.

Kryptonian at Heart

There were a couple of smirks and a little laughter, and one friend asked me “Superman fan, huh?” ( I prefer Batman. With no superpowers, Batman’s primary weapon is his brain. I have one of those, too!)

But I also wore it to an informal reception held just after Lobby Day. This reception took place the night after our Lobby Day effort and was a both a celebration of the day’s events and a preview of Vision 2020. A lot of the attendees were leaving in the morning, so it was also an unofficial good-bye party.

The reaction of my fellow CHDers was amazing. “I need a shirt like that!” More than one person said. Several people asked me where I got it – no problem remembering that; the name of the company is printed on the sleeve. I even got a couple of “threats” to literally peel my shirt off of my body! (At least, I think that they were joking!)

They took a look at Superman’s S shield hiding behind the human ribs and saw what I saw. Although all our stories are slightly different, we’ve all been cut on, knocked down, knocked out, too sick to move, poked, prodded, and connected to just about every monitor that there is, yet somehow we managed to fight back. They saw not a comic book hero, but themselves.

My buddies back home still think I’m a Superman fan. That’s fine, they are great people and I couldn’t make it without their friendship. But the Cardiac Kids and the Heart Warriors that I know see that shirt and they see their own heart – the heart of a true hero.

George

May 16, 2010

My friend George spoke at the recent Lobby Day event in Washington DC. I wish all of you had been there to hear him.

Like many of us there, George has a Congenital Heart Defect (CHD). His defect is Tetralogy of Fallot (ToF) and he is a retired Pathologist from out West. That’s right – a retired Pathologist. I’m not going to insult him by listing his true age, but George worked a full career with a major heart defect.

He’s quiet and unassuming, probably the result of his years in the medical field. Pathology is a very scientific branch of Medicine; attention to detail is a must and you do not jump to conclusions. So when George stood up to speak, I wasn’t expecting what came next.

Long story short: George tore the house down! He stated that he had recently celebrated a birthday and then he said;

“I firmly believe that one day those of us with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

That did it for me right there. I’m 43 years old, but I’m 42 years, 7 months past my “expected” life expectancy. And here’s a respected member of the CHD community, a retired scientist, saying that he thinks that one day we’ll live a good long time? And might even hit the century mark? And all we have to do to start down this path is obtain funding for the Congenital Heart Futures Act? Right then, I was ready to walk down to the Capitol (Three blocks away), climb the dome, and rip that statue right off the roof!

George also has a very dry wit; he can tell a joke with such a deadpan expression that you don’t even realize he’s joking. But his humor can bite, as he proved when he recalled an exchange from his younger days.

“`When I attended medical school they taught me that people like you didn’t make it,’ a doctor told me. I didn’t know what to make of that so I didn’t say anything.”

People like you? Wait a minute… that includes me!

“A few moments later the doctor asked me `Have you thought about which medical school you would like to attend?’ I answered, `Not the one that you attended.'”

You tell ’em, George!

Five CHD Questions: Why?

May 13, 2010

Why are Congenital Heart Defects (CHDs) the least understood and the least funded of all the birth defects?

Despite being the birth defect with the highest rate of incidence, Congenital Heart Defects receive the least funding for research. One would think that this would be the target of massive funding, intense awareness campaigns, and major research allocations, but that is not so. In fact, it is one of the lowest.

CHDs is an “invisible disability” – we hide in plain sight. Other disabilities and illnesses have obvious signs, but the average CHDer can usually blend into a crowd with little trouble. Most of the time this is a good thing; I personally don’t prefer to stand out. One thing I write about on this blog and occasionally mention in a presentation is look at me – see how normal I am! But that also works against us as we can become lost in the shuffle.

When I was born there was no such thing as pre-natal testing; I was born on a Tuesday but it was Friday before my mother realized that there was probably something seriously wrong with me. Even today, a Fetal Echocardiogram is not standard procedure: an expectant mother normally receives this test only if her family has a history of heart defects or other factors come into play.

Despite what you may hear or read on the internet, CHDs are more survivable today than at any time in the past. A minimum of 90% of all children in the United States who undergo heart surgery survive to adulthood. And every year, the odds tilt more and more in our favor. There are currently about one million adults living with a Heart Defect and about 800,000 children.

With almost two million people living with a CHD, we’ve become our own little world. Survivors represent every gender, every race, and every age group. This diversity has led to advocacy groups of all types, such as the Adult Congenital Heart Association (ACHA), Hypoplastic Right Hearts (HRH), and Broken Hearts of the Big Bend. Every Survivor/Advocacy group serves a segment of our community and each one fills a need.

The members of the Congenital Heart Defect community are many and varied. But the one thing all segments of the CHD family needs is more awareness and better research. Because the goal of every Survivor/Advocacy group is to cease operations  because there is no need for their services anymore.

We’ll get there one day;