Posts Tagged ‘Adult Congenital Heart Association’

CHD Breakfast, Conference coming soon!

January 13, 2010

Two different events are going to be happening in Columbia, South Carolina soon – one to raise money for Congenital Heart Defect (CHD) research; and the other one an informational meeting for parents of children with a Congenital Heart Defect!

On February 6, 2010, A group of CHD parents and friends will serve breakfast at the Fatz Cafe on Broad River Road in Columbia, SC. Give them $7 and they’ll serve you pancakes, sausage, fruit, and a drink; and the money raised goes to Heart Defect research at the Medical University of South Carolina (MUSC). A good meal, a worthy cause, and a fair price – what else could you want?

Later that day Palmetto Hearts, a Congenital Heart Defect (CHD) support group based in South Carolina, will sponsor a CHD Parent Conference at The Inn at USC from 1:00 PM to 5:00 PM. One of the speakers will be Kim Russell, a fellow Adult Congenital Heart Association (ACHA) member from Atlanta. You’ll also get to meet and speak with several Congenital Cardiac experts from MUSC!

As much as I would like to, I’m not going to be able to be at either event – I have a previous family commitment. I know Funky Heart! readers enjoy “looking over my shoulder” when I liveblog a CHD event, but I can’t make it to this one, so you’ll have to come yourself!

Besides, do you want to read on you computer how much I am enjoying the pancakes? Probably not – you need to get down there yourself!!!

Heather the Heroine!

January 5, 2010

When I attended the Adult Congenital Heart Association’s (ACHA) National Convention in May of 2008, I met a lot of great people – Heart Warriors from all over the country and our Cardiologists. I was especially thrilled to find myself part of a smaller, more exclusive group – Tricuspid Atresia survivors! I had never met another person with Tricuspid Atresia, and suddenly there are eight of us, posing for a photo together! And there were more than eight of us; but this is all that were around when the “group photo” was taken!

The blonde young lady in the black sleeveless dress is Heather Magee, who has become one of my best friends. Even though she lives on the other side of the country, we’ve literally walked the same path. Heather lived in the Los Angeles area at the time, and a few months later saw an advertisement: The TV show How to Look Good Naked was looking for women who have heart disease.

From the way the ad was worded, it was obvious that the producers were looking for women with acquired heart disease, with no thought of Congenital Heart Defects (CHDs) Deciding that it was time she took a stand for her brothers and sisters living with a CHD, Heather marched down to the production offices and gave them a piece of her mind!

To make a long story short, Heather blew the roof off the joint. Before she knew what was happening, she was on the set of Look Good Naked with star Carson Kressley! Kressley and the show’s production staff even organized a fashion show (in which all the models participating had a Congenital Heart Defect) and presented the ACHA with a $10,000 check!

They also filmed a Public Service Announcement (PSA) with Heather promoting CHD awareness, funding, and research. It’s taken quite a while, but I’ve been able to link to the PSA that ran on Lifetime TV. In fact, this PSA is the origin of a line I often use. Heather is a wonderful, articulate woman that I am proud to call my friend. I think you’ll see why I feel that way.

(Technical stuff: The link takes you to a Facebook video and you’ll need to have the latest Flash Player update.)

Click here to view Heather Magee’s Congenital Heart Defect PSA

Because every heart deserves to live a lifetime;

Becoming a Heart Warrior, Part I

December 21, 2009

Most Funky Heart! readers are Heart Moms and Heart Dads, and a lot of them wonder about what they are going to do about their child’s Cardiac Care as they grow older.  Most Cardiologists can’t handle CHDers – theyare trained to deal with acquired heart problems, things that are brought on by normal aging or (heaven forbid!) too many cheeseburgers. If you have a heart defect, you will need a doctor trained to deal with heart defects – and you will need to see that doctor all of your life.

But even though some of the CHDers my age and older had to, you probably won’t be stuck with a “kids doctor” all of your life. There is a growing cadre of doctors known as Adult Congenital Heart Defect Cardiologists who are trained to treat Congenital Heart Defects – but from an adult viewpoint.

Unusually, these doctors aren’t recognized as a specialty – not yet. What happened is that a lot of these doctors are really Pediatric Cardiologists, who have followed their patients over the years and “grown up” with them. As their older patients came back to them and started asking adult questions (“Doc, you have any tips on getting insurance with a heart problem?” or “Hey Doc, Beth and I want to get married… what about having kids?”) these docs didn’t pass the buck. They dug around, found the data, and worked out the best answer for their patient.

But times are changing, and now there is building momentum – led by the American College of Cardiology (ACC) and the  Adult Congenital Heart Association (ACHA) – to make Adult Congenital Cardiology a recognized specialty, with guidelines and proficiency tests.  New doctors would have to be board certified to be an Adult Congenital Cardiologist. Doctors already in the field would be “grandfathered” in, providing they can pass a proficiency exam.

And as for how adults with CHDs would be cared for, there are already guidelines. The first set of guidelines is known as the Bethesda 32 Report. Bethesda 32 splits all of the known heart defects into three groups – mild, complex, and severe. All CHDers need to be seen at a Regional Adult Congenital Heart Defect Clinic at least once; and perhaps more often depending on their defect. The first visit (which all CHD adults should get) is to establish a baseline – determine what is that individual’s “normal”. After that, someone with a mild heart defect can be cared for by a general cardiologist and only needs to be seen at the Regional Clinic if a problem arises. But someone with a severe heart defect (Tricuspid Atresia, which I have, is considered severe) needs to have regular exams at the Regional Clinic.

A second set of guidelines were recently released. Titled The ACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease, these guidelines were created by the American College of Cardiology and the American Heart Association, and most likely you will never need to read them. (If you want to see them, click HERE; and if you want to download them as a .pdf file, click THIS LINK. )

The ACC/AHA guidelines are an instruction manual: The best ways to combat a problem, based on the best available evidence. As such, the Doctors who work at the Regional Adult Congenital Heart Defect Clinic probably have several copies of this document available, but it will be in the group reference library, not in the waiting room. (And it’s best to leave the waiting room magazines alone and bring your own; germs can’t read but they can use a book to move around.) So even though you may never see a copy of these guidelines, they exist and are an important part of Congenital Cardiac Care. The ACC/AHA guidelines do not replace Bethesda 32; rather the two reports compliment each other.

So even though it may seem that you have very few options as you age, Congenital Cardiac Care for adults is improving.

DC Bound!

December 5, 2009

“I’ll be back.” – The Terminator (1984)

I thought that we had already fought this battle – CHDers have been to Washington DC to lobby for the Congenital Heart Futures Act earlier this year, 250 of us. And in early March our efforts were rewarded by introduction of the Act into BOTH the Senate and the House on March 18, 2009. The Act was given an identifing number for both versions (The Senate version is known as S. 621 and the House bill is marked H.R. 1570.) We’ve even got some good sponsorship, the most prominent being Senator Richard Durbin, the Democrat from Illinois.

So I thought we had fought this battle.

“Just when I thought I was out, they pull me back in!” – The Godfather Part III (1990)

Looks like I was wrong – the Congenital Heart Futures Act is stuck in Committee. It has happened to a lot of bills; National Healthcare Reform has dominated this session of Congress and it seems that everything else has to wait its turn.

So we’re going back to DC, to lobby for the Congenital Heart Futures Act again. And hopefully this time we can get it moving. Lobby Day 2010 is set for April 22, and I’m hopeful that you will make plans to join us in DC.

We need every voice to speak out – not only for the current generation of Congenital Heart Defect Survivors, but for the generations yet to come. And if you can’t come yourself, please consider writing a letter of support for the Act. Every little bit helps!

The Funky Heart plans to be there, once again liveblogging the event and keeping you informed of what’s going on. You can’t just say that you are working against CHDs, you have to get in the fight, put your feet on the ground and be willing to do the grunt work.

We’ll be right there in the middle of it!

“I’m on my way!” – Dick Tracy (1990)

Old Friends

November 6, 2009

Old friend, here we are; after all the years and tears and all that we’ve been through… Bette Midler, Every Road Leads Back to You

Every person in this video is an adult living with a Congenital Heart Defect.

Many Voices Speaking as One

October 22, 2009

I was in Washington, DC for Lobby Day 2009; attending as a member of the Adult Congenital Heart Association (ACHA). My original plan had been to blog the event for a little while, visit one or two of my Congressional Representatives, and then return and resume blogging. My hernia had different ideas; it flared up and I was pretty much out of the game. So I was asking some of the groups if they would be willing to call me with their results and giving my business card to those that said they would keep me up to date.

My card was accepted at that table and the lady paperclipped it to the file folder she planned to carry. A young woman – just a little younger than me – glanced at it and then her face lit up.

“You’re the Funky Heart! Way cool!”

Well… if you mean that I am the guy behind the keyboard, then yes; I am the Funky Heart. But I am not the only Funky Heart. You’ve got a Funky Heart too, young lady. I don’t know you – I had never even seen you until just a few moments ago, but you and I could sit down to talk and instantly be on the same wavelength. We’re fighting a common foe, both of us have war stories that are similar, yet different.

And we need to get out there and tell those stories. There are a little over one million adults living with a Congenital Heart Defect (CHD) and we don’t have a national spokesperson. No huge, well organized THINK PINK campaign generating awareness and donations. And even the group that you think would do these things, The Big Red Heart, focuses mainly on another issue. We’re all alone out here.

But when one million people start talking, it can generate a huge amount of sound. (This place holds 107, 500 people, that’s a tenth of the adult Funky Hearts in the United States!) And if we could all start talking about CHDs we’d make a heck of a lot of noise!

We need to start talking about how a Heart Defect is not a death sentence anymore. People seem to have that idea, but more than 90% of the children who have surgery for a Heart Defect survive to adulthood. A lot of Cardiac Kids grow up to become Heart Warriors, and we’re living full, useful lives.

We need to emphasize how important it is to get good Congenital Cardiac Care throughout our lives, to keep ourselves as healthy as possible. To do this, we’re going to need more Cardiologists trained to work with us, and it would be wonderful to have some kind of health care plan that will accept a pre-existing condition without draining our bank accounts or making us jump through hoops to get it. Wishing won’t make it so, if we want those thing we have to work for them.

We need to teach Heart Moms and Heart Dads how to care for their Cardiac Kids when they’re young; how to instill in them the need to seek out that good doctor when they grow up; and always, always, always keep up with their health. And it’s up to the Heart Warriors to teach them because we’ve Been There and Done That.

A lot of us grew up thinking we were the Only One. Now we know we aren’t, so it is time to start passing along what we’ve learned.

I do what I do to defeat the evil that lives within me;

REPAIRED, not fixed

August 7, 2009

“We are home from the hospital! Our daughter’s heart is fixed,” the blog post says.

While I am glad that the child has been released from the hospital and is on the way to recovery, you need to understand something: A heart defect is never completely “fixed.” It requires lifelong care – even if you have a “minor” defect, such as an Atrial Septal Defect (ASD).

Even if a defective heart can function correctly through surgery, it is still defective – it is not the same as a normal cardiac organ. It’s not as strong, blood flows in strange directions, and there are probably structural problems. Even with a heart transplant, the patient still has to take anti-rejection medication.

As the person grows and ages, so does their heart. Repairs done at an early age can wear out and need to be done again. Here’s an article about a Ventricular Septal Defect (VSD) repair done by catheter rather than traditional surgery, but that isn’t what I want you to see. Read the fourth paragraph:

After many years, the patch that was used to correct the defect began to tear and needed to be repaired.

Ut-oh. So if you have a heart defect, you need to take care of yourself – forever. The first thing you should do is read the Bethesda 32 Report. Every year, the American College of Cardiology (ACC) holds a meeting in Bethesda, Maryland, to focus on one important issue. The discussion of the 32nd meeting was centered on the care of adults with heart defects. The Adult Congenital Heart Association (ACHA) has an information page here; the full text can be found here. The full text link has an option to print the report as a .pdf file (It’s long!) or page down a little for a phone number to order a copy from the American College of Cardiology. I don’t know if there is a cost; I downloaded and printed the .pdf.

The ACC has classed all heart defects into one of three groups: Simple, Moderate, and Complex. Those of us with Simple defects can usually be cared for in the general medical community; Moderate and Complex defects need to be seen at an Adult Congenital Heart Defect clinic periodically. (My defect, Tricuspid Atresia, is considered Complex.) We could also need to take special precautions during non-cardiac surgery and dental appointments, and make various other adjustments to our lives.

90%+ of all children having Congenital Heart Surgery will live to adulthood, and there is no reason they can’t have full lives. But we need to realize that we have to take extra steps to take care of ourselves.

Then we can go conquer the world!

Are you lost?

July 14, 2009

There’s a new report just published in the journal Circulation that confirms something that’s been known for a while: Congenital Heart Defect (CHD) Survivors are often lost to follow-up care. This report specifically studied CHD patients born in Quebec in 1983, a total of 643 people. The findings state that CHDers begin to fall away from Cardiac Care as early as the age of 6, and by the time they reach adulthood, 61% of all Heart Warriors aren’t seeing a Cardiologist. Those of us classified as having a severe CHD do better; by the age of eighteen 21% of us had stopped seeing a heart doctor.

While these patients had not followed through on their Cardiac Care, 93% of them continued to see a doctor for other needs. It is not known if they had been told that their heart problems had been “fixed” (a common misconception) or they were just avoiding the issue.

The Adult Congenital Heart Association‘s (ACHA) “Don’t Get Lost” program is our effort to make sure that Adults with heart defects get the care they need. Even though for many years our doctors told us we were “fixed” and sent us on our merry way, research is proving that is not true. All hearts undergo changes as they grow older, but because of our defects, some of the changes are unique to CHD Survivors. We’ll need to stay in contact with Congenital Cardiologists all of our lives.

What’s the goal?

June 29, 2009

Duncan Cross is at it again; this time he’s got a huge bone to pick with the Crohn’s and Colitis Foundation of America (CCFA).  The nation’s health care system is being renovated, everything is on the table, and practically everyone in Washington DC is putting their two cents in. The only group not fighting to get into the debate is the International Association of Airship Navigators.

So what’s Duncan upset about? The CCFA wants their members to support a Senate bill that will promote research and establish awareness programs.  So while everyone else is redefining health care as we know it, the CCFA apparently wants taxpayers to pay for those little  purple rubber “awareness bracelets”!

No wonder Duncan is upset. He’s got another post worth mentioning about advocacy organizations that funnel all their time and effort (and fund raising) into finding a cure.

For a lot of Chronic Illnesses, a cure may be a long time off. I don’t think there will ever be a “cure” for Congenital Heart Defects (CHD’s); Wikipedia lists 23 separate defects and also states that the list is incomplete. (When I count them up I usually get 35 CHDs, not counting any “blends” – one defect superimposed on top of another.)

So while all these advocacy groups are running around shouting “Donate to us! Help us find a cure! We need your help to find a cure!” at the top of their lungs, a lot of them are forgetting one of the most important things they could do:

Helping those who suffer from that illness to live their lives to the fullest.

That’s one thing I like so much about my group, the Adult Congenital heart Association (ACHA). Yes, we’re all about the technology and the research, but our mission statement makes it clear that one of our goals is “to improve the quality of life and extend the lives of congenital heart defect survivors.” And that’s right there on our website’s front page for everyone to see. Eliza’s doing her part to keep us all going by organizing the ACHA Bolder Boulder team. The national office is promoting our “Don’t Get Lost” program to return CHDers to care who were told that they were “fixed” (a common occurrence). They have also recently developed Vision 2020, our initiative to make sure that everyone with a CHD has good health care – from their Pediatric Cardiologists through the transition to an Adult CHD doctor. We’re not just looking for a cure – we recognize that part of the “cure” is 1) better medical care and 2) doing your part to take care of yourself.

So take a good close look at your support group. What are their goals? What are they doing? Trying to find a cure is great, and hopefully one day someone will figure it out. But until then, is your group trying to help you make it day to day?

If not… it might be time to look somewhere else.

In the Middle of the Night…

June 25, 2009

The River of Dreams, written and performed by Billy Joel

In the middle of the night
I go walking in my sleep
Through the valley of fear
To a river so deep

You’ll never get to be an old man. That heart is going to let you down one day. If you’re lucky it will just stop. More than likely Heart Failure will get you. Your heart will just wind down like an old clock, and you’ll spend months lying in a bed somewhere gasping for air like a fish out of water.

Valley of Fear? Yeah, I’ve been there.

I’ve been searching for something
Taken out of my soul
Something I’d never lose
Something somebody stole

A piece of me is missing. Seriously, a good chunk of my Right Ventricle never developed, but it is far more than that. Most of the little piece of me that keeps my shyness in check is missing. I stumble and I stutter and I look like a fool. I’ve got Hypoplastic Humphrey Bogart Syndrome combined with Hyperplastic Don Knotts Syndrome. I think I’m lacking that part of me that connects with everyone else, because often I feel like I just don’t fit in.

I want my missing parts back.

In the middle of the night
I go walking in my sleep
Through the jungle of doubt
To the river so deep

The reason you feel out of place and can’t get comfortable in your own clothes is you are out of place.  You don’t belong here. Nobody is interested in what you have to say, and this “Funky Heart” routine is silly. They are laughing at you, not with you. Go back to that little hick town you came from.

The Jungle of Doubt runs through my back yard.

In the middle of the night
I go walking in my sleep
Through the desert of truth
To the river so deep

Forty two years ago a doctor told my parents that I had to have surgery right now if I were to have any chance to live. I’m still here. I know some of the finest Doctors and Nurses in the world. I’ve found a group of people just like me, who know what it’s like to have these moments in the middle of the night when you are so scared of what will happen next. When you live in fear of yourself.

Walk down to the river with us, they say. We’ve all been there before.