Posts Tagged ‘Funky Heart’

“Houston, we have a problem!”

June 20, 2010

We’ve run into a little problem with the Hearts Re-United event (.pdf file) in Houston. Not really a problem, but rather an inconvenience.

The meetings are not being held at the host hotel, but at two separate venues. No problem there. But one venue does not have Wi-Fi. The other one does, but it is a private system for employees only. So live blogging the event may not be possible.

I do enjoy reporting the event as it happens (and readers seem to enjoy following along) but if that is not possible, I’ll switch to Plan B. Plan B is simple – a pencil and notebook (the paper kind). I’ll take good notes and write a blog post later. A lot of information is discussed at these Congenital Heart Defect (CHD) Conferences and hopefully some of it will be useful to you.

My presentation takes place on Saturday July 24, followed by a question and answer session with adult survivors. I’ll post a copy of my presentation online after I give it.

Houston in July could be just a bit warm (YA THINK?) and I am glad to say that I have a new hat! My old hat is still in Durham, North Carolina, as far as I know. I packed my suitcase after the Saving Little Hearts/Mended Little Hearts CHD Symposium last year and completely forgot about my hat as I checked out… total bummer! It probably went to the hotel Lost and Found, but hopefully by now someone has given it a good home.

I am looking forward to the trip and to meeting a new group of Cardiac Kids and their parents! Will I meet you there?

At Your Service

May 14, 2010

I’ve been writing Adventures of a Funky Heart! since July of 2008, and during that time I have had the honor of meeting numerous Cardiac Kids, Heart Warriors and Congenital Heart Defect (CHD) Families.

It has been my honor to share some of their stories with you. Hopefully I’ve been able to show you that you are not fighting your heart defect by yourself. No matter how good or poor your heart health may be or how dark the day looks, someone is in (or has been in) the same situation.  Draw strength from that knowledge; when I was growing up we hardly knew there were other people just like us out there. And without a convenient communications system like the Internet to bring us all together we all thought we were the only ones with this  problem.

And that makes beating your CHD so much harder.You need to know there are others out there going through the same thing that you are. And if you are a young parent, meeting an adult with a similar problem as your child’s may be just the boost you need to keep going.

If your CHD Support/Advocacy group is planning a weekend event – a symposium, a conference, an extended meeting – please keep me in mind. If your group wishes, I will be happy to come and speak at your event at no cost to the organizing group.

I have my laptop computer with me when I travel, and if there is an internet connection available I will “liveblog” the event, reporting on the speakers and their presentations. This will introduce your group to a worldwide audience. (If there is no internet connection I will take notes and report on the meeting that night.)

All I ask that you check the schedule first. I’m not wealthy, so I can’t afford to travel every weekend. My health is good and I am always looking forward to the next adventure, but sometimes the budget says “No!”

Also, remember that I am not a doctor and that I speak from my own experience. What works for me may not work for you, and I can’t (and won’t) diagnose you or give you medical advice.

If you wish to contact me – for a speaking engagement or just to drop me an email –  you can find my address in the About the Author link.

Funky Heart tells the story of his first surgery

February 13, 2010

This was taped earlier today at the Regional Forum on Congenital Heart Disease.

Put your Hammer Down

November 28, 2009

“Are you going to take this on, Doctor?” – Dr. Helen Taussig (Mary Stuart Masterson) Something the Lord Made

There’s something that you want to do that is… unusual. Don’t think that there isn’t; we all have that crazy idea every now and again. So what is it? If it’s moral, legal, ethical, and won’t get anyone hurt, perhaps it is time to throw caution to the wind and actually give it a try.

I never dreamed I’d write about living with a heart defect – I mean, I live 5 miles outside of a town of about 400 people. My life is boring; what could I say that wouldn’t put you to sleep?

Then one day my phone rang. I think I scared the person on the other end, since I was really huffing and puffing when I answered it. No problem, I reassured them. I’m doing my walk inside the house today; it is raining cats and dogs out there. What can I do for you?

The Adult Congenital Heart Association (ACHA) was planning a session at the national convention where selected members would stand up and speak about living with a heart defect. Would I like to participate?

That sounded like a lot of fun, and my time limit would be seven minutes. Even I can’t trip myself up in seven minutes, so I accepted. And how in the world had they chosen me? I’m your average dues paying member (ACHA had dues back then, now the organization is FREE to join – a great CHD resource at a fair price!) I don’t rock the boat, and I don’t stand out. I guess my name was just pulled out of a hat.

So I thought about what I wanted to say and got organized, stood up and spoke. I enjoyed it, and the audience did also. Well – no one threw anything! And the hotel that was hosting the meeting was connected to the airport by a walkway. No one picked me up, rushed me down the walkway, and put me on the next plane heading out of town. I took both of those as a good sign.

“I know in every fiber of my being that this is a limb that I want to climb out on.” – Dr. Alfred Blalock (Alan Rickman) Something the Lord Made

Adventures of a Funky Heart! wasn’t my first attempt at writing about my heart problem. I started a blog on a local TV station’s website, named Adventures in Cardiology. That lasted about a week – the only ones who could see it were the people who were registered users of the TV station’s website. And judging from some of the comments that were left on the news stories… well, a few of them couldn’t read!

Adventures in Cardiology wasn’t available, so I needed a new title. And about that same time someone commented “Your heart is just funky and doesn’t follow the usual rules.”

BINGO!

I played it straight for a little while, I really did. Then I started getting comments and emails, and a lot of them were thanking me for writing – they had children with a Congenital Heart Defect, and no one had ever really told them anything about how to raise a child with a ton of energy and a bad heart. So I stopped and really thought about who was visiting the blog and what I wanted/needed to say:

  • Most of my readers were parents of children with heart defects
  • These parents may understand their child’s heart (A percentage of them don’t, not yet. You just can’t learn Cardiology overnight) but they really don’t know what might happen next

So the best thing I could do was be both a teacher and a storyteller – tell stories about growing up with a heart defect (in the middle of nowhere!); try to explain different things about the heart, both normal hearts and defective hearts; emphasize just how normal I am (and a lot of other survivors, too!); and talk about any advances in heart surgery or taking care of CHD Children that I may find.

And keep it light – “go for the funny” if the subject is appropriate. Write so that anyone can understand. eBay is full of textbooks, if parents want to study a textbook, they could find one easily. Reading Funky Heart! is a good indication that a textbook isn’t what you’re looking for.

This is not the career path I would have chosen… it’s better. Because instead of sitting behind a desk pushing paper somewhere, I feel like I am helping out in my own little way. And a lot more people hear my voice when the Funky Heart speaks than when little ol’ Steve says something, and hopefully I’m saying something that you need to hear.

“When I put my hammer and saw down forty years ago and was offered an opportunity to work with a young surgeon, I had no idea that I would be able to make a mark on an institution as prestigious as [Johns Hopkins Hospital].” – Dr. Vivien Thomas (Mos Def) Something the Lord Made

So don’t be afraid to put your hammer down, and walk a different path. Who knows where your journey will take you?

Happy Red and Blue Day;

What really happened

November 25, 2009

Back in August I blogged about faxing a HIPPA compliance form to Johns Hopkins Hospital to get some medical records from my 1967 heart surgery. I already had the records, actually, but I had managed to misplace several of them. So I filled out another compliance form and faxed it to the Medical Records office.

Hopkins responded by sending all of my medical records from that first surgery, not just the 12 sheets I already had. I returned to Hopkins several times for check ups until I was about five years old, but none of those records are included. So now instead of 12 sheets, my stack is about an inch thick. This was a lot more information than I expected, and every bit of it is interesting.

I have Catherization reports, – one of which destroys a family legend; I always thought that we arrived at Hopkins at roughly 10:30 PM, but the Cath report says that I was brought into the Cath Lab at 6:16 PM. Daddy says we arrived at Hopkins about 3:30 pm, and the surgery itself began at 10:30 PM.

There are Radiological reports but no X-rays. I wonder if they deteriorate over the years. Possibly they are filed away in a different place, since all my records are copies, most likely made from microfilm.

Quite a few pages of Nurse’s reports (I can – and probably will – make an entire post about those!) and -

Oh my goodness…

The title of the sheet is OPERATING ROOM REPORT. And this is the entire report, not just the summary and the little bits and pieces of my operation that I assume from what I already know.

After the temperature was down to 32 degrees we used inflow stasis and during a three-minute period of inflow stasis dissected a sizable portion of the Atrial Septum.

I was too small for the heart/lung machine, so the surgical team stopped my heart temporarily by hypothermia – They literally put me in ice and cooled me until my heart stopped. During a three minute period of no blood flow doctors cut into my heart and enlarge an Atrial Septal Defect (ASD). For the heart to work (and its owner to survive) blood has to be able to complete the Cardiopulmonary circuit: flow from the body into the heart, move from the heart to the lungs, then back to the heart, and once again out to the body.  Because my normal pathway is blocked my blood “escapes” through an Atrial Septal Defect (ASD), and that earlier Catherization had revealed that my ASD wasn’t quite big enough.

…at the end of this part of the operation we proceeded to prepare the vessels for a right Pulmonary Artery anastomosis after the technique of Glenn.

This is a phrase that I type often and Funky Heart readers are probably tired of seeing: I don’t have the Glenn Procedure that is currently in use. That’s known as the Bi-Directional Glenn, because blood is rerouted to both lungs. I have the original version of the operation, the “Classic Glenn” or sometimes called the Unidirectional Glenn. In my version, the right branch of the Pulmonary Artery is cut and sewn into the Superior Vena Cava, so the majority of my blood flows into my right lung. CLICK HERE to see the best drawing I have ever seen of the Classic Glenn Procedure.

Chest was closed in layers with #00 catgut and skin with Dermalon. The patient tolerated the procedure well.

(Signed)

Vincent Gott, M.D.

Wow. Just…wow.

Many Voices Speaking as One

October 22, 2009

I was in Washington, DC for Lobby Day 2009; attending as a member of the Adult Congenital Heart Association (ACHA). My original plan had been to blog the event for a little while, visit one or two of my Congressional Representatives, and then return and resume blogging. My hernia had different ideas; it flared up and I was pretty much out of the game. So I was asking some of the groups if they would be willing to call me with their results and giving my business card to those that said they would keep me up to date.

My card was accepted at that table and the lady paperclipped it to the file folder she planned to carry. A young woman – just a little younger than me – glanced at it and then her face lit up.

“You’re the Funky Heart! Way cool!”

Well… if you mean that I am the guy behind the keyboard, then yes; I am the Funky Heart. But I am not the only Funky Heart. You’ve got a Funky Heart too, young lady. I don’t know you – I had never even seen you until just a few moments ago, but you and I could sit down to talk and instantly be on the same wavelength. We’re fighting a common foe, both of us have war stories that are similar, yet different.

And we need to get out there and tell those stories. There are a little over one million adults living with a Congenital Heart Defect (CHD) and we don’t have a national spokesperson. No huge, well organized THINK PINK campaign generating awareness and donations. And even the group that you think would do these things, The Big Red Heart, focuses mainly on another issue. We’re all alone out here.

But when one million people start talking, it can generate a huge amount of sound. (This place holds 107, 500 people, that’s a tenth of the adult Funky Hearts in the United States!) And if we could all start talking about CHDs we’d make a heck of a lot of noise!

We need to start talking about how a Heart Defect is not a death sentence anymore. People seem to have that idea, but more than 90% of the children who have surgery for a Heart Defect survive to adulthood. A lot of Cardiac Kids grow up to become Heart Warriors, and we’re living full, useful lives.

We need to emphasize how important it is to get good Congenital Cardiac Care throughout our lives, to keep ourselves as healthy as possible. To do this, we’re going to need more Cardiologists trained to work with us, and it would be wonderful to have some kind of health care plan that will accept a pre-existing condition without draining our bank accounts or making us jump through hoops to get it. Wishing won’t make it so, if we want those thing we have to work for them.

We need to teach Heart Moms and Heart Dads how to care for their Cardiac Kids when they’re young; how to instill in them the need to seek out that good doctor when they grow up; and always, always, always keep up with their health. And it’s up to the Heart Warriors to teach them because we’ve Been There and Done That.

A lot of us grew up thinking we were the Only One. Now we know we aren’t, so it is time to start passing along what we’ve learned.

I do what I do to defeat the evil that lives within me;

ABC News.com interviews the Funky Heart!

April 28, 2009

I spent a few moments yesterday speaking with a young lady who works for ABC News.com about the Swine Flu, and her article appears today. Go check it out; I’m mentioned on page two!

Swine Flu: Top 5 reasons not to Panic

CHD Blog Carnival: Heroes

March 24, 2009

“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

Welcome to the first Congenital Heart Defect Blog Carnival! When the Carnival was announced, “The Gifts and Challenges of a Congenital Heart Defect” was chosen as the subject. As the entries began to arrive, it became apparent the the Challenges of a Congenital Heart Defect and the unexpected Gifts that occur because of them give all of our entries a certain… heroic quality about them. Average people overcoming the odds. The little guy who wins in the end. Follow along, and you’ll see what I mean. But don’t forget, if you enjoy a writer’s work, be sure to comment in the comment section under their post. The Author might not know of your appreciation if you post it over here! Of course, I’ll forward the comments on the essays hosted on Funky Heart.

Challenge: Something that by its nature or character serves as a call to battle, contest, or requires a special effort.

Sara Wallace of Palmetto Hearts offers a lyrical account of the battle her Cardiac Kid fought – and the battle every Heart Mom fights.

Jen Wright continues the theme as she writes not only of the heroism of her child, but as her community comes together in her darkest hour… and the greater good that may come of it.

Andrea Himmelberger and her family face challenge after challenge…and only later does she recognize the gifts that come from those who share a similar challenge.

Baby Hearts Press Author, Editor, and Heart Mom Anna Jaworski writes about her son overcoming HLHS to become a teenage robotics wiz. I think Alex has an ulterior motive – this Cardiac Kid plans to build himself a replacement heart!

Gift: A special ability or capacity; natural endowment; talent. Challenges we understand, but gifts? Who in their right mind could think living with a Heart Defect could be considered a gift?

In this September 2008 interview, Adult Congenital Heart Association President Amy Verstappen  recounts the personal challenge that was issued to her after heart surgery… and the gifts that she has given (and received) through service to other CHD Survivors. I consider Amy to be one of my CHD gifts; along with being a talented organizer and administrator, she’s a personal friend.

Awesome Mom recognizes the challenge that her son faces but also found an unexpected gift, for which she is grateful. Awesome Mom truly is awesome – she blogs during Sesame Street!

Teri, Author of the Inspiring Hearts blog, offers a ten point list of how her heart defect has made her the woman she is.

Paul Cardall has learned that life is a gift, and he takes a moment to thank the people who are special to him. When you’re fighting for your life you want someone to cover your back, and Paul’s team isn’t going to let him down. Give this link time to load; the photographer captured the Cardall family perfectly!

Heroes, one and all. Special effort? Special ability? Could it be that gifts and challenges are really just two sides of the same coin? Is one that closely related to the other? Your humble host closes with another line from the movie Spider-Man, turning the Green Goblin’s malicious threat on its head as he reminds us that “We are who we choose to be!




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