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The Unique Adult Congenital Heart Patient

Nov 12

Posted by: ACHA
11/12/2013 1:44 PM  RssIcon

By Steve Graham

Most people do not understand what I mean when I tell them I’m an adult congenital. I am part of a growing population of more than one million adults who live with a congenital heart defect (CHD). Thanks to the advances made in congenital cardiac surgery, many children are growing into adulthood.

Like most, after surgery, I thought I was “fixed” and would never have to worry about with my heart. No one told me or my parents about issues that could arise later in life. There wasn’t enough knowledge about long-term outcomes at the time of my heart repair to know with certainty what issues could arise.

I was born with a CHD known as complete atrioventricular (AV) canal defect. My repair in 1972 was successful, but I will always live with a CHD. For most of life, the only reminder of my CHD was the railroad-like scar on my chest. In the winter of 1999, I started to notice sudden episodes of rapid heartbeats and a very uncomfortable feeling in my neck and chest. Needless to say, these episodes concerned me. A friend of mine, a pediatric cardiologist, recommended that I go see an electrophysiologist—a cardiologist who specializes in the heart’s electrical system.

When I walked into the waiting room, it could have been the casting call for the sequel to the movie Cocoon. I was the youngest person in the room by about 30 years. The doctor did not conduct any diagnostic tests. He talked a lot about his education and seemed to be more interested in impressing me with his credentials. Once he listened to my heart, he asked, “What side of the heart is that AV canal located?”

I was shocked at this question. Even I knew the answer had nothing to do with either side of my heart. This was the second clue that I was at the wrong place for this condition. He encouraged me to allow him to do an EP (electrophysiology) study. I refused, and remember leaving the clinic as soon as possible.

Under the advice of my childhood pediatric cardiologist, I got a second opinion. Once I met with my new adult congenital cardiologist and his team, they ordered a cardiac event monitor, so they could help diagnose the arrhythmia. The results indicated I was experiencing an arrhythmia known as supraventricular tachycardia (SVT).

The good news is that my SVT can be managed by medication and, if needed, cardiac ablation. More importantly, the ACHD specialist knew exactly what to do for me. SVTs are common with patients with AV canal defect, since the physiology of the heart’s electrical system is close to the area of repair. Even with the best surgical repair, SVTs often occur and can be managed. Even though they are not lethal, they are serious and need specialized attention. The first doctor may have been familiar with SVTs, but not in the adult congenital patient. The congenital heart is unique, and even though repaired, is not a normal heart.

Without the specialized care of an adult congenital heart program, the first doctor could have caused me more harm. Today my SVTs are being managed with medication. There is comfort in knowing that more options are available, with specialists who understand the complexities of the congenital heart in the adult patient. My advice to anyone living with a CHD is to seek a specialized adult congenital program, even if there are no issues. Adults need regular heart checks to make sure their repairs are sustaining as they grow.

Steve Graham was born with a complete AV canal defect, repaired in 1972. He has spent most of his life working in broadcasting. Currently, Steve is the VP of Marketing for a radio network. In the early 2000s, he served as president of The Children’s Heart Foundation-Florida Chapter. He holds an MBA in Management and a MEd in Higher Education. Steve loves writing and sharing his passion for healthcare communication and congenital cardiology.

Copyright ©2013 ACHA

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5 comment(s) so far...


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Re: The Unique Adult Congenital Heart Patient

Hi Steve:
Thank you for sharing your story. It is true that Adult Congenital Hearts are so different (and each one is unique) and cannot be compared to adult onset heart diseases.
My 23 year old son has CCHD, has had open heart surgery for Fontan (2 years old) and then Extra-cardiac Fontan at 22 years (2012) He just had an epicardial pacemaker implanted in Toronto October 2013.
The strangest thing was being on the cardiac ward with all the adult-onset heart patients and I can't imagine how Ben must have felt being one of the youngest on the ward. Was he thinking "is this what my future holds?" (It certainly wasn't inspiring!)
It would be great (although not feasible) if there was a ward for ACHD patients separate from the adult onset cardiac patients.
Thank you for sharing your story :)

By Brenda Lucas on   11/13/2013 9:18 AM
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Re: The Unique Adult Congenital Heart Patient

Right there with you, Steve. Surgery for Tetrology of Fallot in 1972 and pretty much throughout childhood, adolecense, and adulthood it was never an issue. I saw my cardiologist typically when I needed a physical for sports. I went on to play baseball, football, basketball, etc. in high school and eventually went to college to play baseball. No issues until age 41. Like you, I developed a rapid heartbeart (260 bpm) but really didn't feel that bad. Went to my local fire dept to get my bp and pulse. One ambulance trip later and I've had open heart surgery to replace my pulmonary valve, two atrial ablations (very hard to ablate in the ventricle), and subsequently an ICD. I've been shocked 4 times since then (all appropriate). A couple times were for vfib which obviously saved my life. Of course I take a nice cocktail of meds but I'm grateful for everything.

All of that being said, I completely concur with you concerning choosing an appropriate physician or group of physicians to monitor your condition. I'm very fortunate to be part of the Adult Congenital Program here in Atlanta at Emory University. My cardiologist, electrophysiologist, and their team are at the top of their profession in my estimation. It's our lives, we deserve to get the best information. I'd make sure they are part of the ACHA as well. Thanks for your efforts to bring awareness. Take care.

By Russ Garman on   11/14/2013 4:13 PM
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Re: The Unique Adult Congenital Heart Patient

Thanks for your story Steve, I'm sure their are many unique stories out there & is often very therapeutic for the CHD patient to "tell his story".
I was a "blue baby" in 1947 and didn't have my first TOF surgery until I was 7. At that time not much could be done because medical technology wasn't advanced enough for the Heart/lung machine. The doctor just poked his finger in my pulmonary valve to open it up. Then again in 1966 I had my second TOF surgery and this time the were able to fix my VSD with a patch. I'm still going strong after 66 years with just a murmur and a very insufficient pulmonary valve.
Hope to live another 25 years.

By John Hegeman on   11/20/2013 9:39 AM
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Re: The Unique Adult Congenital Heart Patient

Hi, I am Sharron. I had open heart surgery for TAPVR type 2 w/ASD in 1977. I was 16 at the time and I am currently not on medications of any sort. I have been diagnosed with Atrial Fib as well. I am very physically active and I try to eat as clean as possible. I am I would say a bit unique myself. I have at different times episodes of A-fib and always revert back on my own.Never have I been shocked. I have in the past been on a variety of medications that always seemed to cause too many side affects. The last cardiologists I saw advised me to take aspirin daily. I have been clear of meds for about 6 years now. I only minor flutters each day. I know I go against what is recommended for my situation but I believe and feel that I am healthier today than I was 25-30 years ago. I have lost weight (though I still have some to lose) I exercise regularly and as I stated before I eat as clean as I can. I do strength exercises too. I have had blood work/cholesterol/blood pressure done and all is in the healthy range.
I have had some really bad experiences with doctors and I don't have a regular routine. Like I said I am going against all recommendations but I just have been burned too much.
Thank you. Just my story in a condensed version anyway. Sharron Taylor

By Sharron Taylor on   11/20/2013 9:40 AM
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Re: The Unique Adult Congenital Heart Patient

Sharron, Thank you for sharing your story. As Member Services Manager at ACHA I talk to members every day. Part of what I do is give them the tools to help them to live a long and productive live with whatever CHD they have. One of those is making sure they are in the care of an Adult Congenital Heart Disease (ACHD) Specialist. This is based on the recommendation of the Guidelines from the American College of Cardiology and the American Heart Association. Exercise, normal Blood Pressure, cholesterol etc is important for general cardiovascular health and I commend you for taking care of that but taking care of your congenital heart health is also important. If you haven't seen an ACHD doctor, I hope you will consider doing so. Not getting care or going against recommendations is putting yourself at risk. I would love to talk to you more about this. You can email me at h2h@achaheart.org.

By Paula Miller on   11/22/2013 9:14 AM

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