Posts Tagged ‘survivor’

Dreams of a Funky Heart

October 26, 2010

Beginning to get things together for the trip to Atlanta. The weather is predicted to be a low of 39 Friday night (Brrr!) with a high of 70. (No, I still do not like cold weather!)

And yes, I am smart enough to realize this is an American Heart Association event, and I do understand that the Heart Association does not support Heart Defect causes very well. That’s not the point. Emory University Hospital is a major sponsor and has entered a team; my Adult Congenital Cardiology group is based at Emory and they have entered a “mini-team”! We’ll have bandannas to mark us as CHD survivors, parents, and healthcare professionals. We’ll be well represented!

And I signed up for a Survivor’s cap, so I’ll have another hat to add to my collection. That may not be a good thing, I already have more hats than I have heads to wear them on. That will just thrill Momma!

It’s not about the hat, or the walk, which group I belong to, or even who is sponsoring it. It’s really about going and participating and being counted. Because when I was a little fella, I grew up thinking that there were very, very few kids around with a broken heart. The American Heart Association (back in the days when they were the only resource for any information on the heart) published a book titled When your Child has a Heart Defect. They only listed TEN different defects – I was too young then to realize that they had grouped several of them together. All of the defects of the blood vessels were grouped together, and the structural defects were grouped into Right Atrium Defects and Right Ventricle Defects. Add to that fact that there was very little known about left-sided heart defects in the early 1970’s, and as a result not many defects were covered. So the way I understood it, there were only ten different defects… there couldn’t be that many people who had one.

That “logic” made sense to me back then. So maybe by going, some Cardiac Kid can see me, and all the other adults living with broken hearts, and realize there are more out there than he/she knew about. And perhaps they will realize that they can beat that broken heart.

A Funky Heart can dream, can’t he?

‘These wounds I had on Crispin’s day.’

October 24, 2010

Monday, October 25:  Saint Crispin’s Day

This day is called the feast of Crispian:
He that outlives this day, and comes safe home,
Will stand a tip-toe when the day is named,
And rouse him at the name of Crispian.
He that shall live this day, and see old age,
Will yearly on the vigil feast his neighbours,
And say ‘To-morrow is Saint Crispian:’
Then will he strip his sleeve and show his scars.
And say ‘These wounds I had on Crispin’s day.’
Old men forget: yet all shall be forgot,
But he’ll remember with advantages
What feats he did that day.

– from Henry V by William Shakespeare, 1599

We Missed It!

November 10, 2009

Golly darn gee whiz! We missed it!

The Funky Heart missed out on all the festivities associated with World Heart Day, which was September 27, 2009! What was I doing on September 27th? Ha’ mercy, I can’t remember… were we supposed to exchange gifts?

What’s that? Sorry folks, I hate to get you all excited, but CHDers aren’t really invited to World Heart Day. It’s for those other guys – Acquired Heart Disease and Stroke. Bummer!

But that’s OK. You can have World Heart Day. We’ll stake a claim to November 29th, the anniversary of the first Blalock-Taussig shunt (which predated your bypass operations, by the way) and we’ll celebrate then.

So when you talk about rebuilding your life after heart surgery, we’ll show you child after child who have been fighting Heart Defects from the moment they were born. We’ll introduce you to their parents, who are willing to ask one more question, go one more mile, and explore one more option in an effort to give  their child the best chance to live.

We shall “strip our sleeve and show our scars” – a lot of us have more than one. And we’ll see to it that you meet some of our adults, people who may have fragile bodies but also have an iron will, who never give up and never give in.

We’re only a few, a band of brothers and sisters who fight a common enemy. And we count anyone who fights Heart Defects – Patient, Parent, Doctor, Nurse, Surgeon, Friend – as one of us.

We remember, with advantages, the battles that we  have fought and the warriors who have fallen. Because our story is a story of perseverance, of hope, of determination, and courage.

And that is a story that a good man will teach his son.


October 24, 2009

October 25, 2009: Saint Crispin’s Day

“Then will he strip his sleeve and show his scars,

And say`These wounds I had on Crispin’s Day.’ “

Henry V, William Shakespeare


Coming Sunday

October 22, 2009

Fair Warning: On Sunday, October 25, 2009, I am going to run a photograph of my bare chest. It will be NSFW – Not Safe for Work. I am hopeful that despite that, Funky Heart readers will still drop by.

I seriously doubt that female readers will be calling anytime soon; I am not a body builder. I’ve got some flab out front! (What? You expected muscles  so tight they could stop bullets? Not hardly!)

Like most survivors, I have a chest full of scars – and they make me who I am.You may hear someone say “My life changed when…”, but I don’t know any different.

Yet this journey has taken to places I never thought I would go; I have met some of the world’s best doctors – usually as a patient, I hate to say – and other survivors just like me. And best of all, I get to “speak” to you through this blog. I don’t see Tricuspid Atresia as a curse, though at times it can be a pain in the… ankle!

There will be a post every day this week, Saturday included, and then the photo on Sunday. I picked October 25 because it is St. Crispin’s Day. Why St. Crispin’s? Read  Shakespeare – specifically, Henry V. You’ll understand.

Two Friends in a Hole

February 3, 2009

It’s happening!

Using Facebook to promote Congenital Heart Defect (CHD) awareness is picking up steam. If you have a CHD, are a Heart Mom or Heart Dad, or just a friend of someone who has a Heart Defect, join us! Change your status to read “(Your Name) is a Congenital Heart Defect Survivor! Celebrate CHD Week with me, Feb. 8-14, 2009.” Of course, word it differently if you are a parent or a friend!

Heart Defect Survivors depend on our support group. Our parents are priceless; our friends are irreplaceable. But sometimes the most important people in our lives are Fellow Survivors…. someone we can sit down and talk with. No holds barred and nothing held back. Someone who has been down the same road we’ve been down. They are the only ones who truly understand what we deal with.

Promoting CHD Awareness in a large group like Facebook is a great thing. But it is not only for education – with luck, we can find other people in the same boat that we are in. Someone who can toss us a rope when we need it.

One of the best scenes from the TV show The West Wing occurred when Leo McGary (Played by the late John Spencer) told Josh Lyman (Bradley Whitford) the story about the guy who fell in the hole. His friend came along and dove in the hole with him! “What did you do that for? Now we’re both in the hole!” the first guy said.

“Yeah, but I’ve been down here before, and I know the way out,” the friend answers.

Sometimes you have to have someone who has been in the hole before.

If you’ve never seen the original scene from The West Wing, view the video below.

The face of CHD on Facebook

February 3, 2009

Do you use Facebook?

I do. On my Facebook page, I just changed my status to read

Steve is a  Congenital Heart Defect Survivor! Celebrate CHD Week with me, Feb. 8-14, 2009.

And I plan to leave it like that until February 15.

If you have a Congenital Heart Defect, I ask you to change your status to read the same as mine. Or insert “The Father of …” or “The Mother of…”, as appropriate. And let Facebook users see that we lead normal lives.

If you just know someone with a Heart Defect, you’re invited, too! Change your status to show that you are a friend of a Congenital Heart Defect Survivor!

Being a true friend can be difficult when the other person has a chronic illness. You stand with us, so celebrate with us!

The Mark of a Warrior

September 6, 2008

Here’s an article appeared today in the Cedar Rapids Gazette about Heather Magee, who will appear on How to Look Good Naked this week. I met Heather at the Adult Congenital Heart Association‘s National Conference held in Philadelphia this past May.

Heather’s not a celebrity. (Well… not yet!) Nor is she a “Compensated Spokesperson.” She doesn’t appear on behalf of the ACHA. She’s got a heart defect, just like I do. In fact, she has the same heart defect, Tricuspid Atresia. She’s had the Fontan Procedure, but I haven’t. (I was scheduled to have the Fontan and was actually on the table, but bleeding from torn scar tissue got out of control and the operation was canceled.) So her story rings true and her opinion carries a lot of weight with me.

There was a large gala at the ACHA convention on the final night, and a lot of the attendees were dressed formally. The women were beautiful and the guys were handsome! (Most of us were handsome, I was just less clumsy! I considered it a personal victory not to spill the soup in someone’s lap or wind up face first in the punchbowl!) A lot of the young ladies were wearing dresses that showed their surgical scars and, in some cases, pacer scars. I found myself wondering if this was a new experience, if perhaps this was the first time some of them had worn their beautiful clothes and not been asked “Where did that scar come from?” Physical imperfection must be so much harder on a woman; ladies’ dress clothes reveal much more skin than a man’s, and society demands that you look perfect. And because we, as a society, judge on appearance rather than on substance, someone as beautiful as Heather “hated her scars.”

Heather’s episode of How to Look Good Naked will be on Lifetime TV Tuesday, September 9, 2008 at 10 PM Eastern. Check your local listings for your area. Use Heather’s example to show your CHD children that a scar is nothing to be ashamed of, but rather a mark of victory in a lifelong battle.

It’s a Good Day in my Neighborhood!

August 23, 2008

As we say here in the South, “Ya’ll having a good day?”

It’s been a good day here. In fact, I got a head start on it Friday when I learned that the blood work I had done Thursday looked good. This is really good news, especially from the Anticoagulation Clinic. If your INR is off they will either increase or decrease your dosage of blood thinning medication, and after a change I am always worrying if I’m on the correct dosage.

Today has been a good day, even though I haven’t done that much. I’ve walked, played with my dog, cleaned house (ok, maybe it wasn’t that good of a day!), watched the Olympics, dozed off during the Olympics, and watched the Little League Baseball Championships. A really good day.

Come to think of it, the day I got airlifted to Emory University Hospital suffering from Congestive Heart Failure was a good day.

The day I had that stroke was a pretty good day, too.

Because through all that – and more – my heart just keeps on going. It was broken when I got it, and I guess I SHOULD have returned it while it was still under warranty, but I misplaced the receipt. Ive taken it in to be repaired three times, and each time the repair has helped, but hasn’t completely fixed it. But it doesn’t seem to matter, my heart is like a Timex watch: “It takes a licking and keeps on ticking!”

Yes, I have a severe heart defect. My cardiologist once told me that as far as he knew, I might be one of the oldest living Tricuspid Atresia patients around. (Thankfully, I met someone a couple of years older just a week later!) Under normal circumstances, I oughta be dead. But thanks to great doctors and nurses, great parents, and lots of wonderful friends, I’m still here! And that makes any day a good day!

So I’ll ask you again… are you having a good day?