Archive for the ‘Heart Surgery’ Category

Field Trip!

November 1, 2010

“Any of you guys up for a field trip?” my Adult Congenital Cardiologist, Dr. Mike McConnell, asked at the Atlanta Heart Walk.

Most of the patients said yes. “Where we going?” I asked.

“Oh, we’re just heading over to the Sibley tent,” McConnell said, pointing. “Just over there.”

Our “field trip” was a short one, only about 100 feet away. We walked up to a tent about an equal number of adults and children with a couple of people in STAFF shirts. The sign read

Children’s Healthcare of Atlanta/Sibley Heart Center

“Hi, guys!” Dr. McConnell said. “I brought some of our Adult CHD patients over. We want you to grow up to be just like these people.”

I met three or four of the Cardiac Kids (I didn’t have any of my Lucky Coins to give away! What a let down!) and one young man who was really shy. He wouldn’t speak to me, he held on to his mother’s neck and hid his face.

“Do you have a special heart?” I asked, trying to draw him out. Very reluctantly he nodded yes.

“I do too! You wanna see?” I unbuttoned the top two buttons of my shirt – not going any further on a 42 degree morning – and bent over to show him my scar.

“He’s got a scar just like yours!” his mom said. But my man was still close-mouthed, he wouldn’t tell me his name… and he lied about his age!!

“How old are you?” I asked. “Six.”

“You aren’t six!” His mom laughed. “Try again!”

“Two.”  Mom rolled her eyes. “Noooooo! He’s four!” During our conversation I learned that the little fellow has Dextrocardia – his heart is “flipped” in the opposite direction. As I understood it, most of his other organs are flipped, also. But it was obvious that he was shy, and I was not someone he knew. So mom and I talked doctors for a moment and then I said goodbye.

I’m sorry I never got your name!

2010 Atlanta Heart Walk: The big kids!

October 31, 2010

Here’s a few of the Adults with Congenital Heart Defects at the 2010 Atlanta Heart Walk! All of us are patients at Emory University Hospital’s Adult Congenital Cardiology program! (Add one to the total – I’m holding the camera!)

And these are only a few – I filmed this not long after the event officially started and things began to pick up. I think that in total, 30 to 40 Adult CHDer’s were there! An entire group came storming in together (reminded me of the US Calvary coming to the rescue!) and I quickly lost count.

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

…And say ‘To-morrow is Saint Crispian’

October 24, 2010

If you are a fellow heart surgery Survivor, a Heart Parent, or just want to help rid the world of Congenital Heart Defects, feel free to link to Monday’s post. It will appear very late on the night of Sunday, October 24.

Joshua

October 20, 2010

When Joshua Haskins passed away earlier this month there was a great deal of controversy. This post is not about Circumcision safety issues, but about a related and equally important topic.

Joshua’s mother is heartbroken – she’s supposed to be her child’s advocate, his defender, but now he’s gone and she blames herself. But I don’t – she had been a Heart Mom for seven weeks. There was a lot that Jill Haskins didn’t know, including one critical fact that I didn’t mention.

As regular readers of this blog know, I have a hernia. A hernia can be fixed with a simple operation;  when my dad had his hernia repaired it required an overnight hospital stay, but even that may not be required anymore. The average hernia can be repaired pretty easily, but mine can’t.

My Cardiologist has vetoed a hernia repair more than once, because my blood oxygenation level (the familiar PulseOx reading) is low. A Heart Healthy person will register a PulseOx of nearly 100%; but mine is normally 80 to 82%. “I don’t have any doubt we can put you to sleep,” my Cardiologist says. “The real challenge is waking you back up!”

Not only is anesthesia an issue, there’s more. “I could spend all day describing your cardiac anatomy to the operating team,” my heart doctor continues. “And I don’t know if they would understand it any better when I finished.” That’s quite a statement, considering my doctor has won several teaching awards in his career. I’m 44, and one of the open heart repairs I have had has changed greatly over the years. Another one just isn’t done anymore – there are only three places that I know you can find it: 1) in a musty old surgical textbook; 2) in the brain of a very old cardiac surgeon; and 3) in my chest.

If my hernia were to cause enough trouble that it had to be repaired, I couldn’t just have it done anywhere. I can’t run the risk of having a surgeon who has done this operation 12,759 times before and considers me just another patient, because I’m not. Because of my heart, the plan is to go to Emory University Hospital and have my hernia repaired with a Congenital Heart Surgeon in the room, just in case of trouble. Afterwards they would keep me in the Intensive Care Unit for at least 24 hours – again just in case.

I know this… and I never mentioned it to Joshua’s parents. I don’t recall them mentioning the circumcision to me before it occurred, but that doesn’t matter. I should have said “Look, with Joshua’s heart, there is never going to be a ‘simple’ medical procedure. More than likely he’ll even need antibiotics before and after he sees the dentist, so you really need to think about any kind of operation or procedure that can be avoided.”

But I didn’t say that.

We are each put on this Earth for a reason, to accomplish something. Perhaps Joshua’s task was to remind us all that when you have a Congenital Heart Defect, no medical procedure can be considered “routine.”

Your Choice (My Answer)

October 14, 2010

Yesterday I asked Funky Heart! readers the question Given a choice, would you devise a cure for Congenital Heart Defects, or prevent them? To make it a little bit more difficult I added a stipulation: Your choice would have no effect on the other group – developing a cure will not prevent new cases from occurring; preventing heart defects will not cure those who already have them.

The question generated a lot of debate and discussion (as I hoped it would). But what would I choose to do? The answer might surprise you: I’d choose to prevent Congenital Heart Defects.

Preventing all future heart defects would isolate those of us who already have them… the need for Pediatric Cardiologists would drop as would the need for surgeons with CHD repair skills. You can assume there would be the need for a number of surgeons as CHDers could easily need heart operations later in life, but perhaps not as many as before. The number of Cardiologists would also decline, slowly – there would be a need to serve the current number of patients but that would drop as the patients begin to age and no new cases occur.

Older Heart Warriors would have to increase their efforts to inform and educate younger patients and their families. Not being boastful, but this would be the perfect job for an organization that I am a member of, the Adult Congenital Heart Association (ACHA). We’re already working toward a similar goal: adolescents with a heart defect tend to fall away from good cardiac care as they reach adulthood. They no longer visit their Pediatric Cardiologist; nor have they found an Adult Congenital Cardiologist. A good percentage of them may not even realize that they need an Adult Congenital Cardiologist.

The ACHA is working to prevent this from happening, to makes sure CHDers get good care all of their lives. Currently the Bethesda 32  report outlines care guidelines for the Adult Congenital Heart Defect patient and the ACHA’s Vision 2020 Project is a program designed to provide a seamless transition path – from Pediatric Cardiologist to well-trained, competent Adult Congenital Care Cardiologist without a break in care.(Bethesda 32 may be a name you are not familiar with. Every year, experts from the American College of Cardiology meet in Bethesda, Maryland to devise proper care guidelines for a segment of cardiology. The 32nd time they met (the year 2000), they devised guidelines for the care of adults born with a Congenital Heart Defect. You may not be familiar with the name, but the Bethesda 32 Report is very important to the CHD Community. You can read a good summary by CLICKING HERE.)

In the fictitious world we’ve created – one in which all new CHDs can be prevented – older Heart Warriors would have to step forward. We’re the voice of experience, we’ve literally been there and done that. And in this brave new world, we’re a lot more important. Now, we’re going to have to be teachers – teaching the younger generation how to take care of themselves, what to do and what to avoid. And we’re going to have to help each other out, too… the number of Adult Congenital Cardiologists will also begin to drop. After all, in this world where CHDs can be prevented, why specialize in a field that in time, will no longer exist?

This will cause problems, but I believe they can be overcome. We’re all in this fight together, and as Benjamin Franklin said, “We must all hang together or surely we will hang separately.”

Off the page

October 10, 2010

Have you seen the newest Facebook craze? It’s a quick little game named “Find out how long you have left!” Answer a few simple questions and you get something like this:

John Doe has 42 years, 106 days, and 19 hours left. ENJOY!

*Snort* Yeah, right. There are way too many variables that have to be considered to make an accurate lifespan prediction. And what happens if you accidentally step in front of a moving bus?

John Doe has 0 years, 0 days, 0 hours, and 3 seconds left. ENJOY!

That could ruin your whole day!

My Atlanta Cardiologist was out-of-town during one of my appointments, so I was being seen by his partner. I don’t mind that a bit – she’s playing at the top of her game, too. It had been on my mind for a while, so I asked her THE QUESTION: Doc, how long do you think I’ll be around?

She rolled her eyes. “We’re pretty much off the page already! But as well as you are doing, if you keep taking care of yourself you should live a good long time.”

The key point, of course, is taking care of yourself. That can be applied to the heart healthy as well as the average CHDer. Keep your butt planted on the couch, you’ll wither away. Get up, get out, keep moving and doing things, you’ll last longer. There were two gentlemen in my community who retired about the same time. One came home, planted a garden, did some home improvement projects he had been meaning to get to, stayed active and lived for 15 years. The other one moved a comfy chair onto the porch, put his feet up on the porch rail and watched the world go by…. and was dead inside of two years. The moral of this story is obvious: If you want to live, tear down your porch rail and sell your chairs!

It’s not that hard to stay active. You really don’t even have to think about it. Take the steps instead of the elevator. Or you’re like me and you despise steps. What then? Simple… park at the far end of the parking lot. That little stroll will do you good, and it adds up, too. Have good friends – not the kind that have more drama than the local picture show. In a true friendship there are going to be hard times, of course, and you’ll be there for each other. But if your friend has so much drama in their life that they could export it to China…. you can do better. Keeping your nerves on edge is hard on your system.

Don’t take a shovel with you to the dinner table, you don’t need to eat that much. Eat good foods. I’m one to talk, I’ve been a junk food junkie all my life, but I am always working on it! Being put on a low sodium diet to prevent my heart from taking the day off is a hell of a convincer! A good rule of thumb is foods ending in with an OH! sound usually aren’t good for you. Doh-reet-OH!, Cheet-OH!… you don’t need those very often. About the only exception is the Cheer-e-OH!

Do the little things to take care of yourself. Fasten your seatbelt, and don’t drive like Mario Andretti. Even Mario keeps his speed under 200 Miles Per Hour when he’s on the public highways!

As I often say, Every heart deserves to live a lifetime. But you have to do your part, too.

Exhausted

October 9, 2010

By now you have heard or read of the unusually high number of Congenital Heart Defect (CHD) deaths during the past week. There have been at least six (some have stated that at least ten have passed, but I personally know of six. I’m not certain of the others.)

I’ve become e-mail friends with Joshua’s mom. Joshua was born August 16, 2010 and departed October 6. His mother was by his side practically the entire time, but what’s more, Joshua was never stable enough to travel. He never saw the world outside of the hospital.

52 days of hospitalization, two major heart operations…. the costs are going to be enormous. Joshua’s family is certainly physically exhausted, and before all is said and done they’re going to be fiscally exhausted.

When I was in the Intensive Care Unit after my first surgery in 1967, the cost was $66 per day. After I had a stroke in 2002, Intensive Care was $2200 per day. Note that in both cases the price quoted is basically a “rental fee”. It pays for the right to lay in the ICU bed for 24 hours. It does not include the cost of seeing a doctor, specialized nursing staff, drugs, or monitoring devices. I’ve stayed in hotels that cost $66 per night, but I have never stayed in a $2200 per night hotel. I doubt that I ever will.

The “average” Congenital Heart Surgery and hospitalization could easily cost $100,000. Where is a young family supposed to get that kind of money?

Miracles

September 27, 2010

If only you believe in miracles, baby (like I do)
We’d get by

Miracles, Jefferson Starship (1975)

I was concerned about traffic (traffic in downtown Charleston,  South Carolina can be a nightmare; almost every street is One Way) so I intentionally planned to arrive at the Palmetto Hearts Pediatric Cardiology Reunion early. A little too early, as I was the first CHDer on the scene… oops! But the wait wasn’t long, and before I knew it the entire museum was full of Cardiac Kids and Heart Parents. The oldest CHDer I met was a 16-year-old with HLHS (I never got your Facebook Friend request, Johnathan! Try it again, please!) but most of them were under 10 years old.

When you are that young, your heart is roughly the size of your fist. Imagine operating on an organ no bigger than an infant’s fist, cutting it open to find and repair a hole that isn’t supposed to be there. Imagine finding two blood vessels that are measured in millimeters – these blood vessels are connected to the tiny heart but they are in the wrong place, and it is your job to cut them, switch them, and sew them into the tiny hole where the other vessel was.

Imagine looking into the chest of an infant with part of his heart missing. It’s supposed to be the size of a walnut, but part of it is missing, so there isn’t even that much. As my grandma used to say, “There’s not enough space in there to change your mind.” No, there isn’t enough space to change your mind – but there is plenty of room to screw up, to shatter an already broken heart, to ruin a life and a family forever.

I didn’t talk to many of the children – If you were a child, which would you rather do: talk to the adult you don’t know or play with all the cool stuff in a Children’s Museum – but I did talk to a lot of their parents. I heard tales of living in the waiting room.

Staying by the bedside.

Waiting for a miracle.

That’s what I saw at the Pediatric Cardiology Reunion I attended Saturday night… miracles. A lot of them. Walking, talking, miracles.