Archive for the ‘Emory University Hospital’ Category

Got what you need?

November 2, 2010

They had two walking routes at the Atlanta Heart Walk: a 6 Kilometer (3.7 mile) route and a 1 mile “Survivor’s Walk”. Several times, one of the other Adult CHDers stated that she was going on the Survivor’s Walk. Then suddenly she was looking for Dr. McConnell. “What would you think if I tried the long walk?”

“Do you feel up to it?” he asked.

She nodded. “I’ll do the three and a half mile walk if you’ll walk it with me.”

“I’m game,” Dr. McConnell said, and they moved off to the area where people were gathering for the longer walk.

I left not long after the walkers started – it was cold, and I am Cyanotic. A couple of my friends had the telltale blue tinge, and I am sure I resembled a grape! With me changing colors and shivering in my shoes, and 60% of the attendees out on the Walk, it seemed the perfect time to take off. But I had to laugh at the “preparations” we make before going on a 3.5 mile hike:

Got your water bottle? Check!

Wearing comfortable shoes? Check!

Got your Cardiologist? CHECK!

Epilogue: The walk went really well, and no one – Heart Warrior or doctor – suffered any ill effects!

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.

15,000 people

October 29, 2010

“Glad to be here, happy to be alive.” – End of the Line, The Traveling Wilburys

15,000 people have registered for the Atlanta Heart Walk! Wow!

And my original plan was to just take a quick flight down to Atlanta. I’m glad I didn’t – not with supicious packages being found on various aircraft today. For those of you who may not know, Atlanta is home of the busiest airport in the world. I can’t imagine how crazy it is out at the airport right now.

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?

South Bound and Down!

October 25, 2010

To the tune of East Bound and Down by Jerry Reed:

 

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

Now keep your foot hard on the pedal, son never mind them brakes
Let it all hang out ’cause we’ve got a walk to make
We were summoned to Atlanta, where Heart Warriors will gather
And we’ll be there no matter what it takes!

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

Heart defects have too much power, it affects five kids an hour
And it ain’t gonna rest until we fail
So we gotta dodge it, we gotta duck it
We gotta do our part to stop it
So put those walking shoes on and give it hell!

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

 

THE ATLANTA HEART WALK

8:00 AM October 30, 2010

Turner Field

Atlanta, Georgia

…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.”

What you need in a hospital

September 16, 2010

In an earlier post I discussed what we need in a Congenital Heart Surgeon. Reader Heather let the cat out of the bag by mentioning that wasn’t all you needed… you need a good hospital, too.

How true, how true. As I have said many times before, the doctor you need does not practice in a town of 5,000 people. There aren’t enough patients in the community to allow him or her to sharpen their skills. Skill partially depends on volume – you do something often, you do it right, and you evaluate your results (and you keep evaluating them, constantly). That’s the only way to improve. You learn from someone who is experienced, then you do it yourself, knowing that anything less than 100% is unacceptable. As you gain skill, you learn how to do it better and faster.

That same fact applies to the hospital. You can have the best surgeon that ever put on a mask; but if the hospital you are in has very little experience with caring for post surgical patients, there could be problems. That applies to the type of surgery you are having, not to all surgeries. Caring for someone who just had heart bypass surgery and someone who just had congenital heart surgery is a lot different. Studies prove that the more experience a facility has, the better the outcome.

I love my community hospital. We have about 150 beds and I’m on a first name basis with a lot of the people there. I know the doctors and the nurses not only from the hospital, but I see them in the community. I saw one of my favorite nurses in the grocery store just last week. But that doesn’t mean I’m going to let them do heart surgery on me – they don’t have the skills. They are well-meaning people and I am sure they would do their best, but if I had surgery there, I’d probably come home in a box. We can’t have that, I’m claustrophobic!

A few months ago there was a plan being considered by England’s National Health Service to consolidate the number of Pediatric Heart Hospitals. A good number of people were understandably upset but the reasoning is logical: some of the units performed a relatively small number of surgeries. Consolidating the number of centers may make it inconvenient for some, but it will make the overall results better.

For us here in the States, that probably means a trip to a large city hospital. There are exceptions – Durham, North Carolina  (the home of Duke University Hospitals) is fairly small and Rochester, Minnesota (Home of the Mayo Clinic) is also a small city. But in most cases, we’re heading to The Big City – New York, Los Angeles, Nashville, Boston, Birmingham, Kansas City, Denver, Atlanta. These are only some of the destinations whenever the Heart Warriors I know head to the doctor. “Medical Tourism” is all the rage right now, but to us its old news. The average Heart Warrior is also a Road Warrior; we’ll go to where the best hospitals and doctors are.

And in the words of that great philosopher, Bruce Hornsby – That’s just the way it is.

TELL HIM WHAT HE’S WON!

August 30, 2010

During my appointment in Atlanta I mentioned a problem to my doc – my legs have been hurting. I didn’t think it really amounted to anything…. I fell on July 22, and had not been on my walking program for fifteen days. I couldn’t: my knees were so badly bruised that I didn’t walk, I waddled. Imagine a penguin, that is what I looked like.

So when the bruises began to heal and my legs felt better, I started walking again. Short distances at first, because after a big layoff my body tend to “reset” and I have to build it back up. So I walked a short distance and I felt good. The same for the next day.

The third day I felt really good and just kept going. I walked over a mile! But the day after that my legs were killing me! Well that wasn’t smart, I thought. Too much too soon.

But my legs hurt every day – didn’t seem to be getting better at all. I had the fleeting thought that maybe hitting the floor had damaged something worse than bruises, but my main concern was that perhaps my Congestive Heart Failure was worse. Did my ankles look swelled? Yes they do!… no they don’t….. maybe. (I’m not really paranoid but my mind can run away with me occasionally…. can you tell?) So yes, if my legs weren’t feeling better, we’d certainly be talking to the Cardiologist about this!

So the day came and I discussed it with him. He seemed to think as I did – walked too much – but was concerned that they had hurt for so long. “After you are through here go by the lab. We’ll draw a blood sample to make sure nothing else is going on.”

So I went by the lab before I left and we came home. Friday afternoon I got a telephone call from the doctor’s office…. I have high levels of Uric Acid in my blood, which means a possible case of the Gout!

So tell him what he’s won!

You, sir, have won a prescription of Allopurinol!

*Sigh* Another drug…. and a few more dietary restrictions. No seafood, for example, but that’s not a big deal because seafood isn’t on the Heart Failure diet either. So I have to give up something I gave up eight years ago! Also, no cooked liver. That’s not a problem, I am not a liver lover! Gotta watch the fried foods, that might be a bit of a problem but I will figure it out.

And most importantly, we’ve figured out why my legs have been hurting!