Recent Entries
Why Worry? It Will Probably Never Happen
Celebrating our Successes and Looking Ahead
Milestones
The Real Stress Test
A Forum for Emotional Health, Not Just Physical
I Am No Longer the Only Person I Know with CHD
Changing Cities, Transitioning Care
My Tips for Traveling
Taking Your Scars International
When I Finally Met People With CHD
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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 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.

By ACHA on 9/26/2014 12:33 PM

By Ken Woodhouse

Earlier this month I attended ACHA's 7th National Conference (my first!) in my hometown of Chicago. The conference brought together over 500 CHD patients, family members, and medical professionals for a weekend of learning, sharing, and collaboration. What an amazing group of people to be among! For many of us patients, who can often feel isolated and alone with our CHDs, this was a wonderful opportunity to connect with one another, learn together, and share our stories and journeys with others who truly understand and can relate to our unique situations.

By ACHA on 9/24/2014 9:31 AM

By Steve Graham

Living with a CHD is a life filled with milestones. Milestones are used to measure distance on roads, much like mile markers on highways are used today. They help us gauge how far we have traveled, and how many miles may be ahead in our journey. As a child, milestones did not have the meaning as they do today. So, it was confusing to witness my parents celebrating a day each year that was not my birthday. My parents would measure my progress each year since my heart surgery.

By ACHA on 9/19/2014 11:06 AM

By Alissa Butterfass

Many of us CHDers are familiar with the stress test. Often scheduled weeks in advance, we are told to wear comfy clothing and sneakers. We arrive at the hospital or doctor’s office and get hooked up to various machines and breathing masks, and then hop on either a bike or treadmill and start a carefully-monitored exercise session. The speed, tension and/or incline is increased in planned increments and the physicians or technicians take note of how our breathing, blood pressure, and heart rate are impacted by the stress of the exercise.

When we can no longer continue, we put a hand up, the machines are returned to starting positions and we slowly cool down and eventually stop altogether. Once we’ve caught our breath and the wires are detached, we are free to go about our business. Though I often complain about the effort required to coordinate scheduling and go into the city for the test, in truth it is hardly “stressful” for me at all.

By ACHA on 9/17/2014 2:41 PM

By Kim Edgren

It was a great pleasure to attend the 7th National ACHA Conference in Chicago earlier this month. This was my third and as in the past, it was a very fulfilling experience. From the welcome sessions to the gala, having the opportunity to be around 500+ patients, family and medical professionals in support of our CHD community was both rewarding and inspiring. Young and old, many in the company of fellow CHDers for the first time, others with lifelong friends made at past conferences, together sharing… and dancing!!

By ACHA on 9/15/2014 2:26 PM

By Jorie Malone

Well, I can now say that I’ve met tons of people with CHD. I even spoke to one person with Ebstein’s, which is my fairly rare anomaly. Just like I hoped for (and blogged about prior to the conference), I was able to connect with people who have similar experiences, learn more about my future living with CHD, and make plans to become more involved in the organization. I’m very thankful I decided to attend the conference this year in Chicago!

By ACHA on 9/2/2014 12:54 PM

By Ken Woodhouse

From my perspective as an adult with CHD, one of the most unsettling things about moving to a new city—aside from saying goodbye to family, friends, and the city that I've called home my entire life—was making sure I got connected to another quality ACHD clinic. In late June, I moved from my home in Chicago to Washington, D.C., to pursue an exciting new job opportunity. Having fallen out of CHD care once before (as a teenager)—and having just gone through my second open heart surgery six months prior—there was no way I was going to let my CHD care fall by the wayside again.

By ACHA on 8/27/2014 11:00 AM

By Jennifer Gooden

Last month my husband and I went to Paris as a last hoorah before we would see how the rest of my cardiac year played out. The day we were flying out I was feeling particularly icky with nausea and being exhausted and I was glad to have a few travel “tricks” up my sleeve. So I decided to share a few of them I’ve found to be successful to hopefully ease your end-of-the-summer travels!

By ACHA on 8/22/2014 1:25 PM

By Paul Willgoss

One of the delights of the international GUCH/ACHD community is that in this age of social media an idea can be communicated from New Zealand to Norway, with sidesteps to the U.K. and Finland, in the blink of an eye.

The New Zealand congenital heart charity Heart Kids NZ launched a campaign to highlight the facts that many of us have scars, some more than one and that it is fine to show them off.

By ACHA on 8/21/2014 8:30 AM

By Kim Russell

While recently visiting with a social worker at an ACHD clinic, I found out that there are still adult CHDers who have never met anyone else with CHD. I remember that feeling. It wasn’t one that was talked about or that I verbalized, but it was one that was forever in the back of my mind.

“Am I the only one going through this?” “Wouldn’t it be nice to have someone to talk to who understands what this is like?”