Recent Entries
Lean Forward
Be Your Own Patient Advocate
Remembering the Caregiver’s Well-Being
What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
Thanking Our CHD Doctors
Fussing Over Your Features
Health Above All
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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: ACHA Created: 5/17/2011 1:10 PM RssIcon
Our ACHA bloggers will post about many topics relevant to the CHD community.
By ACHA on 2/26/2013 10:55 AM

By Jon Ritchings, Jr.

In today’s post, I wanted to write about moving forward in a positive way and how we can do that; instead, I’m going to write about getting through tough times. I'm in the middle of one now, or at least what I think is one of the toughest things about living with CHD. You see, I'm about seven months post-op and I feel incredible. My energy is way up and I can run for more than a couple of hundred feet for the first time in years, but I can't do the things I want because I'm having pain in my sternum and ribs down the back of my left side. It happens any time I stretch my diaphragm and it is like a hot knife being stuck in me.

By ACHA on 2/22/2013 10:00 AM

By Alissa Butterfass

Unsure what to write about today, I went to my oldest son’s room and asked if we could talk. Though I promised he was not in any trouble, my almost-seven-year-old still was none too pleased to be pulled away from his Legos. When he finally came to sit with me, I asked him about my heart condition – what did he think it meant? His answers were telling: “It means you can’t run too fast cause you’re old” and “You have to take Lactaid pills to eat ice cream.”

Hmmm… not quite. I certainly wasn’t expecting M. to fully understand what my heart condition was. But since I spend so much time worrying about how my condition impacts my children’s lives, it was a relief to hear that it is not even on M.’s mind.

By ACHA on 2/20/2013 2:22 PM

By Yvonne Hall

How do I recap 50 years in a few words?

Raising a child with CHD alters your life forever and takes you places you never dreamed you would go. Lorelei Hill, fellow blogger and recent heart transplant recipient, is my daughter. Now, being able to share her experiences to benefit others is Lorie’s dream come true and witnessing this phenomenon is mine.

By ACHA on 2/18/2013 2:49 PM

By Paul Willgoss

There’s a “10 Commandments for Runners” floating around on Facebook; being me, I looked at them and wondered if they needed any adaptation for a bunch of ACHD runners.

  1. Thou shall never say “I am not a runner.” If you run, you are a runner.
  2. Thou shall not compare yourself to other runners. A mile is a mile.
  3. Thou shall not skimp on sleep.
By ACHA on 2/15/2013 1:18 PM

By Ellen Greenberg

Birthdays come but once a year. However many we have is up to us. I celebrate two birthdays each year. My actual birthday is February 15 and my other is my “Fontanniversary,” the anniversary of my Fontan revision (on May 10, 2006). I do not think it matters how many life-living achievements you celebrate; as long as you feel the need to acknowledge the day in some way, no one can say you are right or wrong.

By ACHA on 2/13/2013 9:39 AM

By Clare Almand

I don’t often associate Valentine’s Day with my heart condition. I think of it as a day that makes couples feel obligated to go out and spend money on chocolate and candy. For me, that’s just another Thursday. And normally, I wouldn’t even be paying that much more attention to my heart condition or the festivities associated with it during this month, but I feel a little differently after doing my first Congenital Heart Walk.

By ACHA on 2/11/2013 1:23 PM

By Paula Miller
ACHA Member Services Manager

Valentine’s Day is a day for relationships—most often with people you love, like your parents, your significant other, your siblings, and your friends. It’s a day of chocolates and flowers. Yet for those of us with CHD, building relationships outside of those we naturally love is an important aspect of our life.

Who else is as important as those I love, you may ask? As an adult with CHD, I think my relationship with my ACHD healthcare team and with ACHA are—but like many, these are relationships I sometimes take for granted and don’t always work to maintain.

By ACHA on 2/7/2013 12:46 PM

By Kelly Deeny

Perhaps you recall my mentioning that I hate exercise. Because I do. It’s effort. It’s work and all of my work ethic is focused on my career.

Having said that, I’ve found one form of fitness that I deem to be acceptable and even fun. I know, my family and friends probably rolled their eyes on that one but it’s possible. I…love…Zumba! Primarily because even though I’m moving for the full 45 minutes with sweat dripping off my body, I am having a good time. I am dancing, stretching and surrounded by others who are enjoying the class as much as I am.

By ACHA on 2/5/2013 1:54 PM

By Melissa Nelson

The most important thing my dad taught me to do was laugh, especially while sitting in the ER. When psychologists talk coping mechanisms, I would say the most important is laughter. My favorite thing to do whenever I go see the doctor or I’m getting ready to have a medical procedure is crack jokes and be sarcastic.

By ACHA on 2/1/2013 2:04 PM

By Jennifer Gooden

Working in the healthcare field, you would think that my job would provide excellent healthcare benefits. Wrong. Even with the “high option” my insurance is mediocre at best and once you add up all the co-pays you really are not saving as much as some of the insurance companies want you to think.

Lucky for me, last year when I married my hubby I got some pretty cool in-laws and some amazing health insurance. Insurance that was so wonderful that it even has a clause in it about congenital heart disease. Pretty cool, huh? I thought it was wonderful.