The Funky Heart’s Rules

Fans of the TV show NCIS are familiar with “Gibbs’ Rules“, a series of life lessons condensed into short phrases by Team Leader Jethro Gibbs. The Funky Heart also has a basic set of principles.

1) Never take from the Congenital Heart Defect (CHD) community; only give. This one should be a no-brainer. Unless they are lucky enough to be well off, Heart Families have to burn through a lot of their resources in order to help their Cardiac Kid. Medical staff, ICU, drugs, equipment, hotel for mom and dad… all this costs a lot of money. And a CHDer who doesn’t take prescription drugs is a rare thing. In case you haven’t noticed, drugs can be expensive.

CHD Support Groups are also financially strapped.  Most have razor-thin budgets and are barely making it themselves – especially in this economy. If they are lucky enough to generate any revenue, the odds are that money is reinvested in the organization. So I can’t in good conscience take money from these people or organizations – they need every bit of it. When I am invited to attend a CHD conference, I personally pay for my own airfare and my hotel room. My family has been just where these families have been: stretching that dollar until it breaks.

2) It’s not about Awareness. Think about it – most of the readers of this blog are already painfully aware of Congenital Heart Defects. Rather than being about awareness, Adventures of a Funky Heart! tries to focus on CHD Education: Can my child live a productive life? My child has an oxygen saturation of 87%, is this normal? Is Hypoplastic Right Heart Syndrome a defect? I answer these questions by writing about the latest research, new Congenital Cardiac Technology, and stories from my life and the lives of other CHDers I know.

3) NEVER lie. Don’t believe me? If I’m giving you a report or other information, the statements I make are backed up by a link, like this one: The sun rises in the East. You don’t have to believe me, but you can read for yourself and see why I think the way I do. Not that long ago I was accused of using “scare tactics” after I wrote a post listing the side effects of Amiodarone. But I had links to other articles and to a blog written by an Electrophysiologist (a doctor who would normally prescribe Amiodarone) and I stand behind every word of that post.

4) Always be positive. Despite the high survival rate for some heart defects and the declining mortality of CHDs, deaths due to a heart defect still occur. Each one is tragic, a life cut much too short. I do my best to project a positive attitude – you can do it, you’re strong, just hang on. You’re going to get through this. And while I do discuss death when necessary (Jim Wong, Eliza Huff, and Gracie)  I don’t dwell on bad outcomes. Especially in a crisis, that’s not what a mother needs to hear all the time.

5) Be there. Sometimes all you can do is spend time in a waiting room, or just sit and listen (or read an email) as someone pours their heart out to you.

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3 Responses to “The Funky Heart’s Rules”

  1. Anne Gammon Says:

    As always, love what you have to say and your rules, Steve.

  2. Laura todd Says:

    Steve

    I never comment, but I read your blog daily. I love what you have given me and my family, which is hope. Thank you so very much. My son Nathan has tricuspid atresia and will have the fontan on July 28th. He is 2 1/2. I have been following you since he was a week old!

    Again, thank you!!

    Laura

  3. Gina Dyke Says:

    The fact that you are healthy and energetic enough to write, maintain, and inform us on a blog is more than I could’ve hoped for when we were given Casey’s TA diagnosis at 18 weeks pregnancy! I hope people are not giving you a hard time, because they can just choose to not read it! Our heartfriend Lauren C has been dealing with pressure recently, and I am so upset for her. How could ANY adult that is living CHD free understand what you all are dealing with on a day to day basis??

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