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My Split ACHD Personality
Living Past the Expiration Date
Testing, Testing
I Am Not Immune To Cancer
Authorizations, Appeals, and Insurance Claims… Oh My!
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How I Melt Stress Away
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It’s Not Always About the Cure
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Disclaimer

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.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

Author: Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 11/24/2014 8:22 AM

By Jennifer Gooden

In September I was able to attend the ACHA 7th National Conference. I got lucky that my work wife and fellow Fontan, Tracey, was able to attend as well. There were three different “tracks” at the conference. One track was geared more towards patients, while the other two were more for professionals: nurses, doctors, surgeons, medical students… you get the idea. So what were two pediatric cardiac ICU nurses/single ventricle patients to do? We were struck with a very important question: patient or professional?

By ACHA on 11/18/2014 10:47 AM

By Kim Edgren

As we approach another holiday season, it is hard to believe yet another year has passed—another year older as a CHD patient!

I recently read an article in Cardiology Today posted by ACHA, “Adults with congenital heart disease present challenges, rewards for cardiologists.” It is an excellent article and worth the read.

By ACHA on 11/12/2014 9:39 AM

By Paul Willgoss

"You’re looking forward to that test..."

An immortal line from my manager, as I sent her the dates of the 24-hour ECG and the cardiac MRI, and bemoaned the lack of a date for my exercise test.

My cardiologist is doing what they all should do and is checking a marginal difference in my pulmonary valve and ventricles from last year. The changes are being set against the fact that I’ve run my two fastest marathons this year, and knocked a chunk of my course time for my favourite ultra.

By ACHA on 11/10/2014 1:34 PM

By Alissa Butterfass

Back in 2011 I wrote a post for the ACHA Blog around Thanksgiving time. You can read it here, but the gist was that everyone has something; no one’s life is perfect. Sometimes it is easy to know what problem or issue someone is dealing with. Other times on the surface it might look like someone is living the perfect life—but the truth is that person is dealing with something too, you just might not know it. And my lot in life, my issue to deal with, was that I was born with a congenital heart defect.

By ACHA on 11/6/2014 12:06 PM

By Christy Sillman

It was such an honor to present at the 7th National ACHA Conference, and although I am happy to share the slides from my presentation on getting insurance to work with you, I want to summarize my presentation here.

The main message I want everyone to know is that insurance companies, like many people, do not understand congenital heart disease. Luckily, we have guidelines and will soon have medical board certification to help the insurance companies navigate our care – but they need a lot of education.

By ACHA on 11/4/2014 9:32 AM

By Lynda Tobin

You have more experience with congenital heart disease than I have.

This is a humbling thought to have as I write my first (ever) blog post. But it is likely a reality, as many of you have been living with CHD since birth, and I just transitioned to this field two years ago. It has been a happy transition and I find that my 24 years of prior experience in (regular) adult cardiology and cardiothoracic surgery have prepared me well to care for your unique needs. I am so in awe of the strength, determination, resilience and attitude of my adult CHD patients and I look forward every day to going to work to see the patients that I have come to think of as true heroes.

By ACHA on 10/31/2014 1:44 PM

By Lorelei Hill

Venturing out into the chilly October weather has been more difficult this year than in the past. The hustle and bustle of the world outside seems simply unnecessary, and I find myself feeling really content to stay inside, remain quiet, spend time with my family, and just be happy with life. Yes, I still have “bad” days, yet they seem to fall into a stride of sorts, becoming part and parcel of my life journey.

On the topic of bad days, I would like to introduce to you a children’s book by Judith Viorst. Many of you may have heard of it, particularly since the recent release of a motion picture by the same name—Alexander and the Terrible, Horrible, No Good, Very Bad Day. Throughout my children’s childhood, I often found myself reaching for this book.

By ACHA on 10/28/2014 3:36 PM

By Jon Ritchings, Jr.

Stress. Stress! STRESS! It’s the bane of my existence these days.

I’m taking 15 credits at school this semester and am the president of a student club, plus am organizing a bake sale, playing in two ukulele groups, and teaching a ukulele class in two weeks to one of those groups. To say I’m busy is an understatement. I wake up every morning and start going over my list of things to do that day before I’m even out of bed.

By ACHA on 10/22/2014 1:44 PM

By Meghann Ackerman

I’m a big believer in listening to the experts. Based on what I know I don’t know, I can only imagine that the amount of things I don’t know I don’t know is even longer, and that’s why I rely on experts. When it comes to matters of the heart, though, sometimes I forget my policy on listening to the experts.

By ACHA on 10/20/2014 12:58 PM

By Beth Adams

Every now and then, the most amazing people walk into my office. Nina* is one such person. I first learned about her from a friend and colleague from a nearby community hospital who diagnosed her congenital heart defect and asked her to see me for an opinion about treatment options.

You see, Nina was born with an unusual problem that we cardiologists call ALCAPA (because the real name is too long to write every time) and had never had surgery to repair the problem. In this heart defect, the left coronary artery that supplies blood to the heart muscle is in the wrong place; instead of arising from the aorta and carrying oxygenated blood to the heart muscle, it comes from the pulmonary artery and steals blood away from the heart muscle.

Most children with this problem die in the first year of life; Nina was 61 years old when I met her.