Any one else have CHF, SVT, or a VSD Repair

• By CharlieRae76
• Reply 3441079
• October 8, 2012 at 12:05 pm
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pphockeygirl,

Hi I live in Delaware and I'm 36 years old. I wanted to make sure you had read about corrected heart defects in the 1970s. I don’t understand why your doctors aren’t worried about it but maybe they didn’t know about the article either. It’s quite possible that your chest pain, fatigue, and low blood pressure are the beginning symptoms of your heart needing special care. I would recommend that you go on the website, print out the article and give it to your doctor to see what they think. If your symptoms have gotten worse than you should defiantly bring it up to your doctor. If they don’t listen then get a 2nd opinion. At the very least they can do some tests on your heart to make sure there aren’t any problems with your heart. If you have any questions, let me know. Good luck!

Now for my story-I was born with VACTERL Syndrome which is an acronym. Each letter represents a part of the body that can be affected.

V-Vertebral anomalies (differences in the bones of the spine)
A-Anal atresia (problems with the opening of the anus or rectum)
C-Cardiac (heart) malformations
T/E-Tracheo-Esophageal fistula (connection or differences in the trachea and the esophagus)
R/R-Renal (kidney) anomalies or Radial (arm) anomalies
L-Limb (arm or leg) anomalies

I have the V, A, C, R/R and L. I was born with a VSD-Ventricular Septal Defect (dime sized hole in the ventricular wall of my heart). I had open heart surgery to correct it when I was 5 years old.

Recently, I was emailed an article from someone who knew I had open heart surgery as a child. The article was on www.msnbc.msn.com and came out in January 2006 but was updated in 2012 called “Childhood Heart Repairs May Not Last a Lifetime.”

WASHINGTON — One of medicine’s greatest triumphs is hitting a snag: Up to 1 million people born with once-lethal heart defects now have grown up, a pioneering generation largely unaware that heart repairs can wear out as they approach middle age.

Few even get cardiac checkups, apparently believing they were cured as children — although a surgical repair isn’t a cure. Worse, few cardiologists outside of children’s hospitals have any idea how to care for these special hearts.

“The disease as an adult is completely different than the other kinds of heart disease adults get,” warns Dr. Karen Kuehl, a pediatric cardiologist at Children’s National Medical Center in Washington, who recently helped open one of the nation’s few specialty clinics for adults with congenital heart disease.

“Here are people in their early young adulthood who have thought that they went through this (childhood surgery) ... and they were going to be fine. In fact, we don’t know that,” Kuehl adds. “Now we’re seeing things nobody would have predicted.”

Open-heart surgery for babies and young children didn’t become common until the 1970s. Before then, only a quarter of “blue babies” and other infants born with complex heart defects lived beyond a year. Now, more than 95 percent of these “miracle babies” will grow up, living near-normal lives for many years.

Only recently have enough of the early survivors reached adulthood for doctors to notice a disturbing trend: Starting about 20 years after childhood surgery, the risk for some serious problems — irregular heartbeats, enlarged hearts, heart failure, occasionally even sudden death — begins to rise among people who had complex defects repaired.

Caught early, many such problems are treatable or, better, preventable. Too often, patients have serious damage or even need a heart transplant by the time someone links their survived birth defect to the new illness, says Dr. Roberta Williams of the American College of Cardiology.

How big is the risk, and who most needs preventive care? Doctors don’t yet know, although pregnancy does demand extra caution. There have been no large-scale studies of survivors’ long-term health, partly because so many disappear once they outgrow the pediatric cardiologist. Less than half of adults with congenital heart disease are thought to receive any regular cardiac care.

Denial plays a role. Young adults who feel well, and no longer are on a parent’s insurance policy, desperately want to be normal and may not see a need for checkups.

Even if they want ongoing care, there are only about 100 cardiologists nationwide specially trained in adult congenital heart disease. Considering one in 150 babies is born with a heart defect, a soon-to-skyrocket new population of adult patients will compete for limited specialists.

“There’s a setup for people to fall between the cracks,” says Dr. George Ruiz of the Washington Hospital Center, who with Kuehl runs the new Washington Adult Congenital Heart Center — and is combing through boxes of dusty surgical records dating to the ’70s, hoping to track down now-grown “miracle babies” who don’t know their repairs may not last for life.

There are new moves to help:
•Williams is co-writing new guidelines, due later this year, on how to treat adult patients. The advice is aimed both at cardiologists and at other doctors, such as obstetricians, whose care decisions may be complicated by heart abnormalities.
•Cardiologists and patient advocates are pushing for funding for the National Institutes of Health to open the first registry to track long-term health. A registry could help uncover which of 35 different cardiac defects are most likely to cause late-in-life problems, determining who needs specialty care and who will do fine with a general physician’s checkups.

“I don’t mean to say we’re going to die or do poorly,” stresses Amy Verstappen of the Adult Congenital Heart Association, the advocacy group. “But we are likely to need reoperations, likely to develop things like heart arrhythmias where we’re going to need additional care. Better to get it sooner than later.”

For now, symptoms are what send many patients back for heart care, but they can be subtle, easy to dismiss.

Deepa Sinha of Herndon, Va., is a classic example. She had a complex but common defect called tetralogy of Fallot repaired at age 8, a final checkup around 21, and “went on with my life.” Then weakness hit in her mid-30s.

Tetralogy repair frequently spurs a leak in the pulmonary valve that over time damages the heart’s right ventricle, making it hard to exercise and risking a fatal irregular heartbeat. Sinha didn’t know that. For a year she attributed worsening fatigue to being out of shape and the demands of two kids and a career — until the day she couldn’t lift her 4-year-old.

“Life has totally changed,” she says after getting a new valve last year. “I should have gotten this done years ago, if I had known.”

• By pphockeygirl
• Reply 3442590
• October 8, 2012 at 10:10 pm
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Wow thank you. Most of my medical issues including cardiac have always been said it was caused by agent orange through my father.

• By CharlieRae76
• Reply 3442800 · In reply to 3442590 by pphockeygirl
• October 8, 2012 at 11:50 pm
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Do you have any other health issues besides your heart?

• By pphockeygirl
• Reply 3443340 · In reply to 3442800 by CharlieRae76
• October 9, 2012 at 8:35 am
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Yes, Charlie! I was born with a lot of birth defects of which weren't heritary. They have said, past through my father agent orange. The government knows about it but, won't help me with it. Even though I was born with a lot of medical birth defects as I have grown up I have had a lot of other medical issues arise do to my defects and other disorders. Do you have lots of medical problems besides cardiac? If so what's your story?

• By CharlieRae76
• Reply 3447968 · In reply to 3443340 by pphockeygirl
• October 10, 2012 at 6:03 pm
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I was born VATER/VACTERL Syndrome and Congenital Scoliosis. Congenital Hemi-Vertebra, Ventricular Septal Defect, Imperforate Dislocated Anus, RectoVagina, Radial Club Hand w/4 fingers and no thumb, Single Functioning Kidney, Calf Muscles missing in my right leg, Dislocated Hips, Right Leg is shorter than the other.

I’ve had 6 back surgeries (including 1 tethered spinal cord release and 2 spinal fusions)
1 open heart surgery and 1 left/right heart catheterization
4 surgeries on my ureters, bladder, and kidney
3 surgeries on my right arm
4 surgeries on my right foot/leg
1 surgery to put tubes in both ears
1 surgery to implant a Peripheral Nerve Stimulator to help with pain

Currently, I have Chronic Pain, Congenital Scoliosis, Stage 3 Kidney Failure, Tethered Spinal Cord, Degenerative Spine Syndrome (Degenerative Joint/Disk Disease) Severe Sciatica in my right buttock and leg that burns like fire, Lumbar Spinal Stenosis, Muscle spasms/twitches/’electric shocks/shooting pain in my back, right hip and legs. I also have Depression, Anxiety, Post Traumatic Stress Disorder, Panic Attacks, and Insomnia.

VATER/VACTERL Syndrome isn't hereditary. I had genetic testing done and everything came back normal.

What other birth defects do you have? Diagnoses? Surgeries?

• By pphockeygirl
• Reply 3470273
• October 18, 2012 at 10:20 pm
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My birth defects were all caused by agent orange.

• By KimFaith
• Reply 3471260
• October 19, 2012 at 9:55 am
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I suppose I should be grateful that being born 56 years ago with a VSD&never having it repaired, yet i have survived this long, I wonder if the fact that I just had it repaired surgically for the first time two weeks ago will avoid further problems down the road? Only time will tell.
Kim