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CHD is a Lifelong Disease

Aug 7

Posted by: ACHA
8/7/2014 12:43 PM  RssIcon

By Jon Ritchings, Jr.

I know this is a website for adults with congenital heart defects, but I read something over the weekend on my Facebook feed that made me angrier than I have been in a long time—a web link to a story about a baby who was barely two pounds that had recently had balloon valvuloplasty to fix pulmonary stenosis.

I know what you’re thinking, how can this guy be mad about a little girl who had lifesaving surgery? Let me tell you, when I started reading I was really psyched to hear about how well this little girl and her incredible surgeon did. Then I read that the little girl’s cardiologist told them that she was fixed and wouldn’t have any more problems with her heart the rest of her life. At first I was shocked that this cardiologist still believes that surgery of any kind is a permanent fix for a heart condition. I think this is the worst thing a doctor can tell a CHD patient.

We know that CHD is a lifelong disease. I would think that the people my age and older are living proof, that even the most minor CHD can come back to haunt you when you’re older. As a group, we are living proof that as adults, CHD still presents us with challenges.

This little girl and her parents think that she is completely healthy. I didn’t realize that CHDs required specially trained cardiologists and ended up in heart failure at the age of 30. Luckily my cardiologist at the time recognized he was over his head and got me to the people I needed to see.

What I’m asking everyone to do is exactly what you’re doing. Keep sharing your stories and educating people about CHD—even the doctors.

Jon Ritchings, Jr., is a 40-year-old father who was born with pulmonary atresia and hypoplastic right heart syndrome. Although he has made a career in retail, he prefers to be outdoors kayaking and taking photos. Jon likes to draw inspiration from quotes and one of his current favorites is from Lao Tzu: “I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.”

Copyright ©2014

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Location: Blogs Parent Separator ACHA Blog

7 comment(s) so far...


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Re: CHD is a Lifelong Disease

hi, jon. I could not agree with you more. I run a charity that raises funds for research for chd treatment, and our committee is made up almost entirely of chd parents. we are deeply committed to funding programs that study chd treatment as children grow into adulthood. it is difficult to fathom that anyone (much less a doctor) could believe that the baby in your story was "fixed". I applaud you for your story here, and on a personal level, seeing your picture is very comforting to me. my 9 year old son was born with hypoplastic right heart syndrome. Thank you. God bless you and your family.

By lynne accisano on   8/7/2014 1:56 PM
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Re: CHD is a Lifelong Disease

my daughters cardiologist dismissed her at age 16 in 1995. Only in the past 5 yrs has she started care under the proper doctor. I know of several CHD patients who receive no care since adulthood. They are not being informed.

By Betty on   8/7/2014 5:45 PM
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Re: CHD is a Lifelong Disease

Hi Jon: I still hear my mother say (she's 84 years old now): "After you had your surgery the doctor said you were 'fixed' and that you would have a normal life." (TOF with Pulmonary Atresia, Eisenmenger's and Pulmonary Hypertension). She stills says it even after all the hospitalizations, procedures, etc. I've gone through in my life. I agree with you, the doctor is completely irresponsible when he makes statements like these because the patient will have unrealistic expectations. Having said this, I find it a blessing that younger patients have more information about the disease, support and help from organizations like ACHA. I didn't have any of this in my first 45 years of life and I always felt like a guinea pig, being one of the very first survivors. I feel that patients like you and me have paved the way for younger generations to live in environments that keep them informed and provide the support they need. Somehow I find comfort in that because it means family and patients of CHD will never live in the black hole of unknowns that I did. Thanks for the opportunity of voicing my opinion and for bringing up an issue that still needs work on. - Annie

By Annie Brose on   8/7/2014 7:36 PM
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Re: CHD is a Lifelong Disease

I have a similar story. I was born with pulmonary stenosis, which was "fixed" by removing my pulmonary valve without replacement. I did everything I was told to do, receiving lifelong annual testing along with office visits with a cardiologist, who told me as an adult that I had a "slight" right sided heart enlargement, which was to be expected. He told me that the pulmonary valve was "the only valve you can live without". It wasn't until he retired that I found out that the right side of my heart had grown to three times it's normal size, and that I was entering the beginning stages of heart failure. I had no idea. Every year had become more of a struggle, yet I assumed this is what is normal for CHD patients, since this is what my doctor told me as well. Anyways, once I received a Medtronic pulmonary valve in 2009, the right side of my heart shrunk 33% within eight days, so there was a positive end to my story. The size of my heart has stayed consistent, nearly five years later, with no signs of heart failure. I should have insisted on seeing a CHD specialist, rather than a general cardiologist, so I don't resent his ignorance, but he must have known the end result would be heart failure. I will never know. Now, we are aware that this is a lifelong issue, with impending future surgeries, which I have accepted. I do wish I had been aware of this decades ago, but it is my hope that talking about stories like this will raise awareness, so that people born with CHD will receive better medical care, and a better quality of life. Thanks for your post!

By Jennifer Sofia Tatum on   8/7/2014 8:50 PM
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Re: CHD is a Lifelong Disease

So, so true !!!! But in an other hand I think sometimes it's better to lie a little bit to parents. I've seen to many kid living only through disease because their parents see them through the disease as the only thing which identify them. I'm glad that my parents learn me life as any other kid. I learn to be strong.
I also think after a big news you actually not explain all possible future issues. Let the time do that. Ignorance is sometimes a very good protection. I'm a forty CHD survivor with a very rare disease ( 150 in world ) first surgery in France in 74 I'm a dinosaurus for all kids now. The surgery was the only one of this kind. It's very hard to understand my mechanic ah ah ah. We have all the life for learn to live with our failed heart. And sorry for my English. It's sometimes weird.

By Marie on   8/11/2014 6:59 PM
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Re: CHD is a Lifelong Disease

I have TOF and remember one cardiologist saying "you've had your heart is fixed, now forget you had a heart condition". A few years later a different doctor said "when we did your operation we thought we could cure hearts like yours, now we know we can't". I now need a pulmonary valve replacement but can't have the operation due complications which make the risks outweigh the benefits.

Remission seems to be a term that should be applied to CHD, you have 'corrective' surgery, and then may have several decades of good health, only really thinking about your heart when you get breathless or when you go for your checkups. Then as things start to change CHD once again becomes more prominent in your life.

By Antony Horner on   8/25/2014 1:02 PM
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Re: CHD is a Lifelong Disease

I just want to take a moment to thank each and every one of you for posting your stories. I find comfort and encouragement in them as the mother of a now 24-year-old daughter who was born with TOF. Two years ago, she underwent a valve replacement and its been hell ever since. She had her first surgery at 11 months old. We were blessed not to have to take any drugs. She had very few restrictions and lived her life to the fullest. Hot air ballooning, karate, rock climbing, Zip Lining, school, work . . . .everything was great! Then, in a short amount of time, she went from all of the above to suddenly falling down for no explainable reason, excessive fatigue and falling to sleep at any time. Within 2 weeks, we went from seeing a special Cardiologist to her second open heart surgery. The aftermath was a successful replacement but she now has strong PVCs, PTSD, seizures, anxiety and panic attacks. She was also diagnosed as borderline agoraphobic. She is now on 5 different meds that she will take for the rest of her life. She sees two different therapists and we're battling back, determined to have her live the best life possible. You guys here keep me SANE. They don't tell you about all the other traumas that CHD can bring on. They don't tell you about the mood swings, the anger, the frustration, the hopelessness . . . . all the challenges both the patient AND the family face. I thank God that my daughter has one hell of a team that I stay on top of. As her parent, even though she is an adult, I have always been her primary care giver. I meet with the doctors and make sure that she understands everything; I insisted on the doctors holding conference calls and collaborating when her seizures first started because NO ONE could figure out what the hell they were OR what was causing them. They are non-epileptic seizures brought on by trauma and stress (PTSD). I hope that I can share something that will encourage someone else and give peace. Us supporting each other is VITAL. I haven't had much time to even breathe but at least now, I am getting used to our new "normal" and am no longer terrified that I am going to lose my baby girl. God bless all of you and keep sharing!!

By My Simpson-Phillips on   8/26/2014 1:05 PM

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