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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

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Jun 7

Posted by: ACHA
6/7/2011 11:01 AM  RssIcon

By Paul Cardall

There are more than a million adults living with congenital heart disease.

A little over a month ago, the Adult Congenital Heart Association gathered for a conference in L.A. that brought together a majority of physicians who specialize in caring for potential lifelong survivors in the field of congenital heart disease.

I was fortunate to attend with my wife and meet many of these doctors along with several adult survivors who like me are enjoying a good life despite its many challenges.

I walked away from the conference believing adults who have survived with CHD and the doctors who care for them are clearing a path that will enable even more children born with abnormal hearts to grow up and enjoy life. This requires, however, patients never stop seeing a congenital cardiologist just as you would not stop seeing your dentist to avoid cavities.

The average cardiologists, even if they have a little bit of experience with birth defects, usually do not understand how to treat deformed hearts.

Specialists or congenital cardiologist understand the anatomy and know how to treat symptoms and find corrective surgical procedures. Many patients with complicated heart problems often can develop long term complications associated with their particular heart problem. For example, liver failure or arrhythmias. Only adult congenital cardiologist know when to start looking for early signs as well as provide up and coming medical therapies and treatments for these adults before it becomes too late.

Above all, "if your doctor can't draw your defect on a napkin or piece of paper on the spot, and has less than 20 patients with CHD, then you need to find a new doctor," said Daniel Murphy, Jr. MD from Stanford.

I discussed the ACHA conference and adult care on the CHD Show with Jim Ferretti:

Take a listen to the podcast.

It's also available on iTunes.

Paul Cardall, who was born with essentially half a heart, is an award-winning pianist, lecturer, and author. His latest studio album, "New Life," debuted as the #1 Billboard New Age Album in February 2011. After receiving a heart transplant in September 2009, Cardall wrote a memoir chronicling his experience, "Before My Heart Stops," published by Shadow Mountain. For more about Paul, click here.

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2 comment(s) so far...


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Re: ACHA Conference Review: It's All About Lifelong Survival

Paul, I just moved back to my home town and although my home town has one of the best Pediatric Cardiology doctors (he found my defect in 1983 when I was 17), it is kind of scary being out distance of just a short drive to an ACHD clinic where I had been living. Some of my own family members still don't understand why a regular cardiologist won't suffice. It really makes a difference to see a specialist who like you said can draw my specific heart and show me how it is working and know things that will help it work better. Thanks for sharing this post.

By Steph on   6/10/2011 11:51 AM
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Re: ACHA Conference Review: It's All About Lifelong Survival

Paul,
You are so right. I was seeing a general cardiologist for years (I am now 51) and never had a thought to seek out someone with expertise in ACHD. I guess I assumed he was knowledgeable. Well it nearly killed me when my atrial valve began to go and I suffered my first arrythmia. I was directed by a friend to seek specialized help at Boston Children's Hospital. This resulted in an immediate scheduling for surgery to repair the valve and cryo ablation. In addition they repaired a hole between the right and left ventricle that had gone undetected all these years. I recall that about 10 years ago I had asked my cardiologist, "What happens to people like me who have had what I do?" His response was, "We don't know - your going to tell us that?" I should have started looking right then. But I guess I didn't really want to face the answer at the time.

By Tim Lane on   3/21/2013 11:55 AM

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