Showing posts with label HRHS. Show all posts
Showing posts with label HRHS. Show all posts

Tuesday, June 23, 2009

Physical Restriction after Fontan: How do You Know?

A recent article in the American Heart Journal from researchers at the Hospital for Sick Children in Toronto questions the use of physical activity restrictions for children after undergoing the Fontan operation. In the abstract online, the researchers studied how the information regarding restrictions are conveyed from the cardiologist, parent and in the medical charts - often these three sources disagree. Regardless of the cardiologist reported restrictions, 70% of parents reported that their child's activity was restricted. Parents and cardiologists report the same body contact restrictions, but differ for exertion and competition restrictions. Medical charts reflect competitive sport, but not body contact or exertion restrictions. So, what to do if you're a parent?

This study suggests that parents are left with uncertainty about physical activity, and rightly so, given the significant variance in the sources of information they receive.Primary care doctors are often not included in the loop (medical records don't reflect the restrictions for exertion and body contact).

Cardiologists need to work to ensure that activity restrictions are accurately conveyed, which will enable parents and primary care providers to confidently encourage the active lifestyles. And parents, talk to your cardiologists - don't take the advice of the primary doctor (though he or she may be correct). While your primary care physician is likely a wonderful, well rounded person, the specialist is better able to answer the questions specific to your child's condition.

Tuesday, February 10, 2009

Inspiration

There's a great new blog out there by Teri Martin, an adult CHD survivor... Inspiring Hearts. Teri's personal blog, Finding Inspiration Every Day has often been a source of solace for me during stressful work days - she lists simple things she loves, reasons to be happy, tidbits of her life. And her art work is amazing. She says her art is a direct result of her CHD - while other children played sports that were not an option for her, she pursued art - and is thankful for her gift. (Some of her art is featured in this post - more can be found on her Etsy site!)

Here's Teri's story, and an introduction to the wonderful things she's doing to spread awareness, create cohesion in the CHD community between the generations of survivors and to infuse others with hope, creativity and a passion for life.

Inspiring Hearts
by Teri Martin

If I had to pick a word that summed up my life's motivation, it would be inspiration. I was born with Hypoplastic Right Heart Syndrome PA/IVS with moderate TA. Being one of the oldest survivors of this complex disease, I never really knew many people with CHD growing up. So I focused on what inspired me to get through a lot of the hard times as a child and teenager. I could not go play on the playground when it was too cold or too hot, let alone try a sport. So I spent hours creating art and writing. Even as a kid, every time I was depressed I would bury myself into things that inspired me to be something more. My mother would probably say I had a very active imagination.

It wasn't until college where I really met people like me who had CHD. Still, back in college information was scarce, what I could find on the internet didn't make much sense unless you went to medical school. It wasn't until years after I graduated, that I learned about CHD associations like the ACHA. I was a bit hesitant to join, but I eventually I did, when I thought it was best to seek advice from those who could understand me and know what I have been through. So this past May, I went to my first conference, mostly to learn the information that was to be presented to us, but I walked away from the conference with much different objective. I wanted to learn my new friend's stories. The best times I had at the conference where the times we just sat down and shared our lives with each other.

I left the conference inspired to help others. When I returned home I kept thinking that there wasn't any place where we could really share what we have been through. The ACHA message board is great, but was more geared to talking about medical issues which is a great thing, when you want advice, need to vent your frustrations, or just want a friend to listen to you.

While I was at the conference some mothers were there who had young children and they asked us so many questions. When I got home I would have daily emails from parents, and teenagers asking me a lot of the same questions I was asked at the conference. So, as 2009 approached, I drew from something I already loved to do and had been doing for a few years already; I started another blog.

I started off by asking different parents CHD groups to send me questions, I also asked my fellow survivors what questions they think are important to answer. After I had gathered my question I went to my fellow ACHA'ers and asked them to volunteer to answer these questions and tell their stories. The response was overwhelming! Some of these questions are really hard to answer so it takes time, but each week I have gotten back at least one person responses, and I hope to have more in the months to come.

So in January I took my favorite word inspiration and named my blog "Inspiring Hearts," Living with Congenital Heart Disease: These are Our Stories. I want this blog to be a place where adults with Congenital Heart Disease are able to give hope to future generation of survivors, but also inspire each other to live life even in the face of such challenges.

Thank you, Teri, for all you are doing for the CHD community, your peers and the generations of survivors to come. You are, truly, an inspiration!

Thursday, February 5, 2009

CHD Survivor Video!

This is Mark O'Shea's video for the song "Look at You Now!", filmed at the Vanderbilt Children's Hospital Pediatric Cardiology Unit. As you'll see at the end of the video, Mark's one of us!

Enjoy!

Tuesday, June 24, 2008

First Hearts United Conference held for HLHS families

PRLog (Press Release) Bloomington, MN, USA. Jun 23, 2008 -- The non-profit organization Hypoplastic Right Hearts held its first-ever medical and educational conference, Hearts United 2008, in Bloomington, MN June 18-21, 2008. Families with children born with hypoplastic right heart syndrome (HRHS) from around the US and Australia gathered to meet in person for the first time, and some families had never met another child in person with the same diagnosis.

The members of Hypoplastic Right Hearts planned and fundraised for almost 3 years to make this special event happen.

Five years ago when Amanda Adams of Colorado had a baby boy born with a complex, life-threatening congenital heart disease (CHD) where the right ventricle of the heart does not develop properly, she felt all alone as her newborn son faced multiple open heart surgeries to have a chance at survival. Consequently, Adams founded and became president of the online non-profit group, Hypoplastic Right Hearts (www.hypoplasticrighthearts.org). Hypoplastic Right Hearts provides emotional support for parents, primary caregivers, survivors and their spouses, and bereaved parents of children with CHDs that result in a hypoplastic right ventricle. What started with a handful of “heart moms” as a Yahoo! Group in 2003 has now grown into a worldwide membership of over 450 families.

For more information about Hypoplastic Right Hearts group and Hypoplastic Right Heart Syndrome: http://www.hypoplasticrighthearts.org