Recent Entries
Fast Recovery
It’s Not Always About the Cure
But I Drink Kale.
CHD and the Law: Hospital Mergers, Part 2
CHD and the Law: Hospital Mergers, Part 1
Trusting Heart
Heart to Heart in Atlanta
Becoming Part of a Crucial Mission
The Reality of the “Red Band Society”
Why Worry? It Will Probably Never Happen
Search

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 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.

By ACHA on 10/17/2014 10:31 AM

By Brenna Isaacson

My 68-year-old father was recently put on a low-sodium diet by his cardiologist. The very next day, my cardiologist put me on a low-sodium diet. I'm not 68. I still pass for 28.

At first it was funny. Me? Me—the girl who eats mostly fruits, veggies, and no red meat. Me—the girl who only eats fried food once a month and only if it's off of somebody else's plate. Me—the girl with a sweet tooth but who can turn a half-inch square of chocolate into five bites. Me? But...I drink kale.

By ACHA on 10/15/2014 12:47 PM

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate directly or indirectly to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

This is the second part in a two-part series about hospital mergers; the first part can be read here.

Adults with congenital heart defects are big users of our nation’s healthcare system. We have more surgeries and procedures, go for more check-ups, and require more frequent and complex testing. And if the healthcare market lacks healthy competition, healthcare costs skyrocket—as do insurance premiums, deductibles, and copayments. As I saw firsthand with my hospital, the antitrust laws don’t only regulate theoretical pants megastores but also regulate hospitals and the entire healthcare industry.

By ACHA on 10/14/2014 1:56 PM

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate directly or indirectly to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

In the late 80s, I had my first two open heart surgeries at North Shore Hospital on Long Island. About 20 years later, I went back to the same hospital for my pulmonary valve replacement, but for some reason, the hospital had a new name: North Shore-LIJ. In fact, “North Shore-LIJ” wasn’t just one hospital, but was a conglomerate of 16 hospitals located all over Long Island and parts of New York City.

By ACHA on 10/13/2014 2:56 PM

By Kelly Deeny

A recent violation of my trust (minor, yet impactful) brought to the surface issues I long thought had been dealt with. Instead, I came to realize that my battles with depression and anxiety could very well be linked to my open heart surgery.

I wrote an earlier post about how my broken heart needed mending and became a reason for me to keep my emotional heart closed, even though the damage was repaired. What I hadn’t thought much about was the psychological ramifications that stemmed from the surgery itself.

By ACHA on 10/9/2014 2:17 PM

By Kim Russell

"I wanted to go to the ACHA National Conference, but wasn't able to. This Heart to Heart Where You Live event in Atlanta was a great opportunity to experience it in part on a local level," was a common comment heard after our event this past Saturday. People came from as far away as Arkansas to enjoy time together with fellow CHDers and hear informative speakers who talked about topics such as lifelong care, low-carb diet, and the electricity of the heart.

By ACHA on 10/7/2014 12:46 PM

By Daniel Spandau

I am glad to say that I am one of the more senior members of the CHD clan—born in 1954, Blalok-Thomas-Taussig Shunt in 1956 and “full repair” of tetralogy of Fallot in 1960. I had some follow-up care for the next 10 years and then nothing for 30 years. As I was turning 50, I applied for some life insurance and needed a cardiac review. As you may have guessed, I did not get approved for additional life insurance, but was put on a path to meet some of the most incredible people.

By ACHA on 10/2/2014 1:38 PM

By Becca Atherton

I have seen the internet abuzz over a new television show called Red Band Society. I've read a few reviews of the show that were written by chronically or terminally ill teens who had watched the pilot, and their reviews made me worried they wouldn't be portrayed properly. While there were a few things that I disliked about how they portrayed life in the hospital, there were some wonderful teaching moments and this show will hopefully raise awareness about children with terminal or chronic illnesses.

By ACHA on 9/30/2014 11:52 AM

By Yvonne Hall

Last week I lost a dear friend, three short weeks after she received a frightening diagnosis. This beautiful, caring lady always showed concern about my daughter Lorie’s condition, offering a reassuring word. Her state of health was never a worry, so how could we know she would be the one taken so suddenly? Her untimely death reminded me of the uncertainty of the future and the futility of wasting our present moments worrying about what may or may not happen.

This unexpected loss drove home to me once again the truth of the affirmation I keep posted on my computer screen, “Why worry? It will probably never happen.” This can be tough to embrace but so very true.