Archive for the ‘ACC’ Category

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.


Five CHD Questions: When?

May 12, 2010

When are Congenital Heart Defect (CHD) survivors at their most vulnerable?

There are two schools of thinking in the CHD world. For lack of a better term, we’ll call these two philosophies “Old School” and “New School”.

The Old School is what Cardiologists used to tell CHDers and their parents: Now that the child has his/her surgical correction(s), they are “fixed”! Certainly, they may be a step slower, not be able to do as much, can’t play as hard as the other kids, but their defective heart has been repaired and they are set for life. All is well that ends well!

New School is the reality: As time passed as the early survivors began to grow into adults, they started having problems related to their deformed hearts. Finally it was realized that just maybe that original repair wasn’t permanent, and some of the old problems were coming back. So now, New School Cardiologists tell their patients that while they are repaired, a CHDer needs lifelong care by a specialized Cardiologist to make sure that those problems stay under control.

Be warned, the Old School of thought still exists, despite all the evidence to the contrary. Old School thinking exists on several levels – not only does it include the fallacy of “once repaired, totally repaired”, there is also a segment of the population who think Heart Defect = Death Sentence. Such thinking is toxic and you do not need this in your life: The best thing you can do if you should run into someone with an Old School mindset is to RUN!

The most dangerous time for a CHDer is when he/she begins to transition away from their Pediatric Cardiologist to an Adult Cardiologist. Most Adult Cardiologist deal with Acquired Heart Disease, not Adult Congenital Heart Defects (ACHD). Acquired Heart Disease are heart problems caused by diet, clogged arteries, hardening of the arteries, high cholesterol, and the natural aging of the heart. Someone with a Congenital Heart Defect will not have these problems, or they will manifest themselves differently in our bodies. So we need someone experienced with caring for Adult Congenital Cardiac patients – an ACHD doctor.

The problem is, there are currently very few ACHD doctors available. In an interview recently posted on Adventures of a Funky Heart!, Dr. Michael McConnell gave an example: There are about fifty Pediatric Cardiology practicing in the city of Atlanta, Georgia, but only two part time ACHD Doctors.

ACHD doctors can be found, though it may take some searching. The Adult Congenital Heart Association (ACHA) offers an ACHD Clinic directory for the United States and Canada on their website. (ACHA Membership is free). ACHA is also pursuing Vision 2020, a proposed blueprint for Adult Cardiological Care in the 21st Century.

Vision 2020 builds on the Bethesda 32 Report produced by the American College of Cardiology. Bethesda 32 was produced in 2000 and addresses the issue of Adult Cardiological Care. (The name is derived from the 32nd meeting of the American College of Cardiology’s yearly focus group held in Bethesda, Maryland.  The group studies a different issue each year.)

The Bethesda 32 Report divides the known heart defects into three groups – “Mild”, “Moderate”, and “Severe” and recommends the proper level of care needed for each group. While someone with a “mild” heart defect – a very small unrepaired Atrial Septal Defect (ASD), for example – can usually be cared for by the general medical community with yearly ACHD checkups, someone with a “Severe” defect (my Tricuspid Atresia, for example) needs to be seen in at an ACHD Clinic regularly. Severe CHD patients should also consult with their home clinic before undergoing most medical procedures, getting pregnant, etc.

There is a good outline of the Bethesda 32 Report HERE; you can read the report online by clicking THIS LINK. Click “Print a PDF” from that page to print out a copy of the Report. Be prepared; it is over 60 pages long.

Having a copy (or several) of Bethesda 32 can come in handy when/if your insurance company balks at providing coverage for an out-of-network doctor. The report can be used to show established medical guidelines saying that you need to be seen by a specialist.

The profile of the “average” Heart Defect Survivor is changing, as there are currently more adult survivors than there are children. Congenital Cardiac Care is slowly changing to reflect this.

Overheard at Lobby Day

April 27, 2010

This is a selection of phrases, sayings, quotes, and general conversations I overheard at the Lobby Day activities in Washington DC. “Lobby Day” is a bit of a misnomer, as events began Wednesday night and didn’t conclude until Saturday evening. (Since I wasn’t involved in the Saturday events I was not there.)

Sometimes I knew the person speaking, and sometimes I didn’t. But in either case, I have chosen to protect their privacy.

*

“I cut a photo of Jim Wong out of the newsletter and put it in my wallet. Where ever I go tomorrow, he’s going with me.”

*

“Did you ever think you’d be in a room full of people just like us?”

“No way. I didn’t even know anyone else with a heart defect until college.”

*

“The doctor told me `At my medical school, they taught us that people like you didn’t survive.’ I didn’t know what to say to that. A few moments later he asked `So, have you thought about the medical school you want to attend?’ I told him, `Not the one that you attended.'”

*

“One day people with heart defects will routinely live to be eighty, ninety, and even one hundred years old.”

*

“Don’t worry, it’s all going to fall into place tomorrow. We’ve got a good message. And if it doesn’t work, I’ll kick somebody in the knee.”

*

“Let’s win this for everyone who never had the chance to get here.”

*

(To US Capitol Police Officer:) “I have a pacemaker, I’d like a hand search rather than walk through the metal detector.”

“There seems to be an unusual number of people with pacemakers coming through today.”

*

Congressional Staffer: “Why aren’t there enough doctors trained to serve these adults with heart problems?”

Cardiologist: “Because twenty years ago, kids with heart defects usually didn’t live long enough to grow up.”

*

Cardiologist: “I told the Senator `Adults living with Congenital Heart Disease are receiving third world level care, right here in America. This law is the first step in doing something to fix that.'”

*

“Starting an Adult CHD Survellience System may sound strange, but it will help more in the end. We’ve already had the surgeries, taken the medications, and all that. If the people at CDC can gather data on us, analyze it, and figure out what works, and what doesn’t, it’ll save a lot of children from all the trial and error that we had to go through.”

*

“How far do you think you have walked today?”

“I don’t think my pedometer can count that high.”

*

“My feet are killing me. But I wouldn’t trade a moment of this for anything.”

Thank you!

April 25, 2010

Thank you for being a friend
Traveled down the road and back again
Your heart is true you’re a pal and a confidant

Thank You for Being a Friend, Andrew Gold (1978)

A very big THANK YOU to the people who helped make Lobby Day 2010 such a wonderful experience:

Amy Verstappen, President of the Adult Congenital Heart Association (ACHA), and her husband Richard; my wonderful hosts and tour guides;

Anna, Fatima, and Nicole; all members of the ACHA Office Staff who welcomed me and put me to work;

Amy Basken; who works for several Congenital Heart Defect (CHD) organizations, serves as ACHA’s Advocacy Director, and coordinated most of our Lobby Day activities;

Molly Nicholson of the American College of Cardiology; for her work in helping this bill become a law and also for her friendship;

Paula Miller, a great friend and fellow heart warrior who accompanied me on two of my legislative visits;

Dr. Mike McConnell, my Cardiologist at Emory University in Atlanta, and my partner on my third legislative visit;

And especially to all 150+ CHDers and Advocates who brought their message to Capitol Hill!

Lobby Day 2010: Let’s win this…

April 22, 2010

“Let’s win this for everyone who never had a chance to get here.”Hoosiers, 1986

(LIVE UPDATES – REFRESH THIS PAGE OFTEN!)

6:26 AM: Good Morning from Lobby Day 2010, from our home base here at the Phoenix Park Hotel! I have actually been here since 5:45, but unable to get online for some reason. Then suddenly, the internet connection worked and we are in business!

I plan to liveblog throughout the day, giving updates as events warrant. If you are getting this through Facebook or through an email subscription, it might be better for you actually head over to the Funky Heart website (https://tricuspid.wordpress.com) and follow us LIVE!

The quote above is from the movie Hoosiers, about a very small (64 Students) Indiana high school Basketball Team that makes it to the state finals. As the quote says, let’s win this for everyone who never had a chance to get here – The child in the ICU at Johns Hopkins who passed away the night I was admitted in 1967. Karen McNaulty, the driving force who formed the ACHA. and my friend Jim Wong, who was here for Lobby Day 2006, 2007, and 2009, but who passed away due to Cancer earlier this year. Jim, we’ll do our best to make you proud, my friend.

6:42 am: Pace is picking up, states are being assigned to tables in ball room. SC crew will share table with Iowa, Tennessee, and Oregon. I asked for SC to be put here because I FINALLY got an internet connection and it might be bad luck to move! (No, I’m not a bit superstitious! Not at all!)

I don’t know when my lobbying assignments will take place, so I might disappear for a stretch of time. And if the internet goes out again, I might be out of luck  but we’ll deal with problems as they occur!

6:55 AM: Time for breakfast!

7:20 AM: Training session is beginning! We’re reviewing the “ask” – an “ask” is just that – what we want our legislator to do. The Congenital Heart Futures Act is law, but only words on paper until money is allocated. So the thought for today is a familiar line from the movie Jerry McGwire: “SHOW ME THE MONEY!”

Our Ask is 7.25 million dollars. 3.75 million for the Congenital Heart Defect Surveillance System, 3.5 million for pediatric CHD research. (Surveillance system for Pediatrics already exists, but does not include CHDs.)

The National Institutes of Health (NIH) does not like for Congress to say “Spend XXXX on this type of research.” They are top notch scientific minds, everything is tested and evidence based. NIH would rather be allocated total amount of funds with recommendations on how/where to spend it. They’re very good at sorting through data and finding what needs a higher level of funding.

Taking a moment to remember the warrior who are no longer with us…. and to make this a celebration of them. In the words of Paul Cardall, “Let’s Celebrate Life!”

8:09 AM: Got my Schedule: John Spratt at 10 AM, Lindsey Graham at 2:30, Jim DeMint at 4. Liveblogging is going to be a bit of a challenge this afternoon, but we’ll work it out!

I’ll have to leave about 9 to get to my meeting, need to clear up a few things before then. May be a while before I update again.

8:31 AM: Here we go! Back in a while!

8::41 AM: Slight Delay, but all good. Almost ready to catch the shuttle to the Hill.

11:07 AM: Just back from a meeting in the offices Representative John Spratt (D-SC)! His staff are well informed and seem to be on board with CHD research funding! I think he is with us!

11:41 AM: It is quiet right now, as most of the lobby teams are out. I’ve filled out my Visit Report and written a thank you note to the young lady we spoke with. Lobbying isn’t just about walking in and saying what you want – that happens all day, every day. It’s too easy to get lost in the crowd. Lobbying is really about building relationships, and a thank you card goes a long way. After all – how many people send thank you cards there days? You gotta stay in the front of people’s minds!

1:01 PM: Off on another visit, on the Senate Side this time!

4:41 PM: Had a meeting with the staff of Senator Lindsey Graham. Excellent meeting! Mr. Colin Allen remembered me from two years ago wand was very receptive to our request! He understands where we are coming from, and why we need more survellence and research. I think we can count Senator Graham as a WIN!

I hung around in a Senate office building cafe rather than return to the hotel and then have to go back, and later had a good meeting with Senator Jim DeMint’s staffer. This young man just started – he doesn’t even have business cards yet. but he warmed to the subject and before long, he had a good understanding of what we were looking for. Of course, we left our Ask Sheet and in a few moments I’ll write the visit reports.

I was happy to have my Cardiologist, Dr. Mike McConnell, with me during the visit to DeMint’s office!

5;57 pm: I’m going to close the liveblogging now, it has been a great day, I think a lot of progress has been made! Tomorrow, ACHA is presenting the Vision 2020 forum – changing the way Adult Congenital Care is done. Read tomorrow for a look at the future of CHD care !

Make it Easy!

April 21, 2010

Sung to the tune of Take it Easy, by The Eagles:

Well, I’m a standing on a corner in Washington, DC
Such a fine sight to see!
Hundreds of people showing up to lobby
Most of us with a CHD!
Come on Congress, don’t hold up progress;
We’re gonna find out today who is with us.
We can’t lose, but if we don’t win
we’ll keep coming back again and again.
So clear your schedule we’re coming in,
let’s make this easy!

Work Together

April 21, 2010

We must all hang together or most assuredly we shall hang separately. – Benjamin Franklin

There is a sheet included in the information packet for Lobby Day 2010 that reads:

I pledge to stay focused on Lobby Day 2010 key message points:

A) Increased federal funding for NIH Research in CHD

B Increased federal funding for health surveillance in CHD

This sheet must be signed and submitted before your registration for Lobby Day is complete. Why? To maintain unity of message. There will be a couple of hundred people walking around Capitol Hill, trying to obtain funding for the Congenital Heart Futures Act. And while we each may feel that funding for our area of interest is important, the surveillance system created by the act is the building block. With it, we can come back later and request funding and needs assessment for all of the different Congenital Heart Defect issues that we focus on: Adult Congenital Care, Fetal Echocardiograms, causes, racial disparities, PulseOx, and anything else. Without the Congenital Heart Futures Act, we ain’t got nuttin’. So think of it as the foundation for everything else to build on.

Knowing that, it is imperative that all of our lobbying teams stay on message. In a way, a lobbying group is like a choir. Imagine what would happen if every member just sang whatever they wanted to? The audience would be screaming – and then they’d get up and leave! And could you blame them?

This is why you are asked to give your word, and to signify such by signing your name.


Either we win together as a team, or we will die as individuals.
Any Given Sunday (1999)

Rocky is on our side!

April 19, 2010

C.H.D. in the USA!

April 18, 2010

Sung to the tune of R.O.C.K. in the USA by John Cougar Mellencamp

They come from the cities

And they come from the smaller towns

From all walks of life

With hearts that go

Crack! Boom! Bam!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Yeah, Yeah!

Fighting for the U.S.A.!


Said goodbye to their families

Said goodbye to their friends

With pipe dreams in their heads

And very little money in their hands

Some are black and some are white

Headin’ to DC to set things right

Solid as a rock with our eyes on the prize

‘Cause we’re gonna be…

Fighting CHD in the U.S.A!

Hey!


Voices from nowhere

And voices from the larger towns

A head full of dreams

Gonna turn the world upside down

There were people with stenosis, pig valves, and Fallot

(They were fightin’!)

Bad aortas, switched vessels, ASDs,  Cardiomyopathy

(They were fightin’!)

Spotlight on the HLHS team

And don’t forget the Funky Heart!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting for the U.S.A!

HEY!

30 seconds

April 17, 2010

“…when you play at this level there’s no ordinary venue.”

One Night in Bangkok, from the musical Chess, 1986

Legislative meetings can occur in an instant. I don’t mean just not lasting very long, but quicker than you can imagine. You almost have to be talking – and making your point – as you walk in the door because there is no guarantee how much time you may have.

Is this rapid pace fair? Probably not – but it is the way things are done, so if you plan to plead your case to your legislator, you had better learn how Congress functions. Your objectives are to 1) to make sure the Legislator knows that you are a constituent – Members of the House of Representatives are especially interested in hearing the concerns of the people they represent, since they are up for election every two years; 2) make an impression by telling your story; 3) make sure the Legislator knows what he can do for you (vote on legislation, fund a project, etc.); and 4) leave some resource material behind that they can refer to later. And because you don’t really know how much time you will have, you need to be prepared to do all this in 30 seconds.

Could you do it?

My 30 second story is below. I’ve moved it further down on the page so you can think about your own story, and then compare yours to mine.

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My name is Funky Heart, and I live in Funkytown, South Carolina. I was
born with a Congenital Heart Defect back in 1966 – I survived only
because I have great doctors and parents who would turn the world
upside down to give me a chance to live.

CDC’s new National Congenital Heart Surveillance System will compile
data on heart defects for researchers to sift through. Hopefully this
will lead to longer, better lives for those of us who have a heart
defect. All it needs is for Congress to fund it.

Everyone needs a hero – here’s your chance to actually be a hero: Fund the new Congenital Heart Defect initiatives.