Posts Tagged ‘Heather Magee’

Heather the Heroine!

January 5, 2010

When I attended the Adult Congenital Heart Association’s (ACHA) National Convention in May of 2008, I met a lot of great people – Heart Warriors from all over the country and our Cardiologists. I was especially thrilled to find myself part of a smaller, more exclusive group – Tricuspid Atresia survivors! I had never met another person with Tricuspid Atresia, and suddenly there are eight of us, posing for a photo together! And there were more than eight of us; but this is all that were around when the “group photo” was taken!

The blonde young lady in the black sleeveless dress is Heather Magee, who has become one of my best friends. Even though she lives on the other side of the country, we’ve literally walked the same path. Heather lived in the Los Angeles area at the time, and a few months later saw an advertisement: The TV show How to Look Good Naked was looking for women who have heart disease.

From the way the ad was worded, it was obvious that the producers were looking for women with acquired heart disease, with no thought of Congenital Heart Defects (CHDs) Deciding that it was time she took a stand for her brothers and sisters living with a CHD, Heather marched down to the production offices and gave them a piece of her mind!

To make a long story short, Heather blew the roof off the joint. Before she knew what was happening, she was on the set of Look Good Naked with star Carson Kressley! Kressley and the show’s production staff even organized a fashion show (in which all the models participating had a Congenital Heart Defect) and presented the ACHA with a $10,000 check!

They also filmed a Public Service Announcement (PSA) with Heather promoting CHD awareness, funding, and research. It’s taken quite a while, but I’ve been able to link to the PSA that ran on Lifetime TV. In fact, this PSA is the origin of a line I often use. Heather is a wonderful, articulate woman that I am proud to call my friend. I think you’ll see why I feel that way.

(Technical stuff: The link takes you to a Facebook video and you’ll need to have the latest Flash Player update.)

Click here to view Heather Magee’s Congenital Heart Defect PSA

Because every heart deserves to live a lifetime;

Heather Magee: Share your story!

December 2, 2008

What follows is written by my friend Heather Magee. Like me, Heather has a heart defect; in fact, we have the same heart defect, Tricuspid Atresia. I met Heather at the Adult Congenital Heart Association (ACHA) convention in Philadelphia this past May. When I asked if she would write a “guest post” for Funky Heart, the only limitation I gave her was that it had to have something to do with living with a Heart Defect.

And now, from the keyboard of Miss Heather Magee:

As a storyteller I love writing tales about all kinds people and their adventures but when it comes to myself the brakes hit the floor.  It’s hard to be objective and honest, it’s such a vulnerable experience for me.

A year ago this week I lay in a cozy, queen size bed at my friend’s house recovering from my third open-heart surgery, a surgery I never thought I would have to experience. I thought I was fixed. So as I lay there I review all I been through in my 38 years of life, the many years of my denial had gotten me into trouble and I felt so alone. The depression was unbearable, I knew I was a healthier soul after my operation but my spirit was congested and confused.  I wanted to write a story, get it out of my system but heaven forbid I share my story. I needed a subject . . .  .  So I turned to the amazing Internet.  Within an hour of searching I came upon the ACHA website, I felt as though I found gold.  I read for hours, there were so many amazing people who I could relate to. I was absolutely overjoyed and truly indulged in all that the website had to offer.  Soon ACHA became a friend that I had to visit with many times a day.  My writing project had fallen off the to do list and I just enjoyed connecting with people who had literally felt my pain.  The months passed and I got stronger and stronger, before you knew it, it was late April and I was preparing to go to Philadelphia to meet all these people that had been such a huge part of my recovery.  Being able to attend the ACHA National conference was like being invited to the hottest party in town, I was so excited. Once I arrived I was completely overwhelmed and brought to tears, how had I gone so long without this community? Why did I always feel so alone when there were many, many people JUST LIKE ME? I spent the weekend learning as much as I could about the latest research and resources. I connected with as many people as I could and it was wonderful.  Shortly after I returned home I felt a bit sad and disconnected, I couldn’t quite pinpoint what it was that was that was making me blue, so I did my best to function.

Two weeks after the ACHA conference my friend told me about a show that was looking for heart patients, he thought I could be a great help to them considering the conference I had just attended. Within days I met with a casting producer and shared my knowledge on ACHA and all the people I had met. I threw CHD statistics at him as if we were on a trivia show. After about an hour of chatting, the producer asked me my story. My first instinct was to pump the brakes, but before I could even debate myself on the subject I was talking, sharing, spilling my guts.  It was as if my heart took over and was telling the story, my brain just sat frozen as all the raw, honest tales of my life hit the fresh air. Several days later I got a call from the executive producers of HOW TO LOOK GOOD NAKED, they wanted me to share my story on national TV.  That’s when I realized it was time to be a storyteller who shares the story of myself.   That is why I had been so blue, I didn’t release the one story I knew best, the story of me. That’s how you help those like yourself, you share your story, get it out there, let others know they are not alone.  There are so many people that need/crave a connection and how are they to find us if we don’t share and help build a community that will be there to comfort anyone who is in your very own shoes.

My name is Heather Magee and I shared my story on HOW TO LOOK GOOD NAKED on Lifetime Television.  I advise all with congenital heart disease to share, share, and share.  It’s the only way to heal yourself and others.

*******

Steve again.

As I mentioned in yesterday’s post, the statistics say that there should be 2.4 million Americans living with a heart defect. We know there are 1.8 million – 1 million adults, and 800,000 children. Yet two things are happening: 1) Survivors like Heather and I often think they are all alone until they get involved in a CHD support group, usually by chance; and 2) As far as research funding goes, we’re getting the crumbs from the table. The March of Dimes supports preventing birth defects, not living with them, and “our” organization, the American Heart Association, concentrates on stroke prevention. Only a fraction of a penny of all medical research funds goes to Congenital Heart Defects. (.pdf file)

So it’s up to us. We have to step into the spotlight for a few moments and tell our own story. To find those of us who aren’t being helped by a support group, those who are “lost” to good medical care, and to educate the average person about Heart Defects.

Do you think that you can you do that?

I do, on this blog and whenever I get the chance.

Heather did… on national TV, at that!

You can do it, and I’ll help you… starting tomorrow!

SPEAK UP!

December 1, 2008

“Who am I? You sure you want to know? The story of my life is not for the faint of heart.” — Peter Parker, Spider-Man

Here’s what I need you to do:

Call or e-mail everyone you know who is involved in the Congenital Heart Defect community. Heart Moms, Heart Dads, older Cardiac Kids…and ask them to read Adventures of a Funky Heart!, beginning tomorrow. By hook or by crook, get them here. If your friend doesn’t have computer access, offer to print out the page and give it to them to read.

Because tomorrow, Heather Magee is going to be my “guest host”, and she’s going to tell you about sharing her story with the viewers of How to Look Good Naked. And for the next few days, I’m going to help you prepare to share YOUR story… and help every one of us with a Congenital Heart Defect.

Because a Congenital Heart Defect is an “invisible disability.” In, fact, if you type the letters CHD into a search engine, most of the results will involved that other CHD – Coronary Heart Disease. The average guy on the street will never know we have one… and neither will our lawmakers. We’re an unseen group. If the population of the United States is roughly three hundred million, (305,787,407 estimated as of this writing) then there should be two and a half million people with a heart defect living in the US right now. That’s a pretty large group of people! But since we’re “invisible”, we’re often overlooked.

If we want better funding for research or insurance that is easier to obtain, we’ve got to get out there and let people know about life with a heart defect. Quell some rumors and disprove some misunderstandings. We aren’t just sitting around, waiting to die. We’re out living our lives, contributing to society, and all we want is a fair chance to keep on keepin’ on.

To get that chance, we’ve got to speak up. If you are interested in telling your story, I’ll be glad to help you tell it.

Heather’s story will be posted about 7:00 PM Eastern Standard Time Tuesday, December 2, 2008. Be here!

“I do what I do to defeat the evil that is inside of me.” — Lamont Cranston, The Shadow… and often borrowed by Steve, The Funky Heart

Let’s give them something to talk about…

November 27, 2008

Happy Thanksgiving! Things are quiet around the Heart household; the family meal was delicious and the Christmas Tree has been raised. I’m just being good, because Santa Claus is watching!

Actually, I’m thinking about being bad at Christmas. The lump of coal that Santa will drop in my stocking could be very useful if the price of oil goes back up!

For your reading pleasure tonight is a study done in Western Canada. Heart Parents are true heroes! But we knew that already… Just in case you haven’t figured it out just yet, i think that my Heart Mom and Heart Dad are true champs! I’m thankful for them on this special day (and every day).

Here’s an eight page .pdf file on cardiac catherization, written in simple English. It’s aimed at children, so if your Cardiac Kid has to have a cath, it would be good to go over this with him/her.

And here’s an eight page booklet (also a .pdf file) explaining some of the specialized “heart words” we use from time to time.

An Adventures of a Funky Heart post has been selected by “Surgexperiences”! Surgexperiences is a weekly roundup of posts from surgical blogs. It’s hosted on a different blog each week, and this time it appears at The Scalpel is Mightier than the Sword…

You may remember Adult Congenital Heart Association (ACHA) member Heather Magee from her appearance on the TV show How to Look Good Naked. Next week, Heather is going to step in for me one day and tell you the story about telling her story. Hopefully Heather can help you tell the story you know best: “the story of you”.

And remember, Saturday is the 64th anniversary of the Blalock-Taussig Shunt! CHD surviviors are going to mark the occasion by wearing Red and Blue!