Posts Tagged ‘Atlanta’

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!

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.

Parading down Peachtree!

July 11, 2010

I’m heading back to Atlanta!

And no, this is not for my usual check-up – though I will have one of those in August. This time I’ll be heading down on Halloween Weekend for the American Heart Association’s annual Heart Walk! Emory University Hospital is putting a team together for the walk and my docs in the Adult Congenital Heart Defect Clinic are gathering a “Mini-Team” of their patients. So I was asked if I could attend and unless something comes up, I AM IN!

Good medical care by Adult Congenital Cardiologists is so very important to someone with a Congenital Heart Defect (CHD).” Regular” Adult Cardiologists can’t handle us: they are trained to take care of patients with clogged arteries, too much Cholesterol, or recovering from heart attacks. We need a Cardiologist who is trained to take care of an adult with a CHD, and Emory is one of the few places in the United States that offer this service.

So if you are an Adult CHDer in the Atlanta area (or about to become one!) register for the heart walk and join us at Turner Field on Saturday, October 30, at 8:00 AM!

Georgia on my mind

August 26, 2009

Just an old sweet song, keeps Georgia on my mind.Ray Charles

I’m in Atlanta for a checkup with my Adult Congenital Cardiologist. I’m scheduled to get an electrocardogram, bloodwork, a pacemaker check, AND the doctor’s appointment… the Four Star Service Special! I wouldn’t be surprised if they checked my points and plugs and rotated my tires! Seriously, if you are visiting the hospital or one of the clinics from out of town, Emory is good about getting everything scheduled for the same day.

You find friends in the most unusual places. Whenever we’re driving to Atlanta, we’ll stop at the Georgia Welcome Center to make reservations for the night. We have a couple of favorite hotels in the area, and if they are booked, it’s easier to find out before you get there and need a place to stay.

When I walked into the Welcome Center one of the employees was restocking a brochure counter. “May I help you?” she said before she looked up. When she saw me she smiled in recognition.

“Hi!” Before I knew it she was hugging me. “Good to see you! Heading back to the doctor?”

It was just like running into an old friend. We talked for a few moments before I made my hotel reservation; by then another worker had come out of the back. He greeted me too! “How are you doing? You look good!”

It was really quite amazing – working at the Welcome Center, these two probably see a couple of hundred different tourists every day, but they remembered me, and even remembered which hotels I usually stayed at. So if you’re in South Carolina traveling on Interstate 20 West, stop by the Georgia Welcome Center and say hello to George and Maggie. They will be glad to see you!

Hey, I know that guy!

February 26, 2009

Dr. Jennifer Shu, who appears on XM Radio‘s Reach MD, has an interview with Dr. Mike McConnell. Dr. McConnell is co-director of the Adult Congenital Heart Disease clinic at Sibley Heart Center in Atlanta and Associate Professor of Pediatrics and Medicine at Emory University School of Medicine. He’s also on the Adult Congenital Heart Association‘s (ACHA) Medical Advisory Board. AND…he’s the Funky Heart’s cardiologist!

I’ve been his patient forever, it seems, and always seek him out when I’m in the middle of a health crisis. (I keep my regular “Nothing unusual is going on” appointments, too! That’s one of the most important parts of good medical care: routine monitoring and examinations.)

Dr. McConnell and Dr. Shu discuss transitioning a Pediatric cardiac patient to Adult care. The broadcast schedule (and a link to the podcast) can be found here.

Heart Force One

February 17, 2009

Received an e-mail just before I left for Atlanta, one of the larger airlines has changed my flight schedule. According to them, the next flight I plan to be on will now leave before before the chickens wake up. And the flight that brings me home arrives at the crack of dawn. And they let me know this so I wouldn’t be inconvenienced! Grrrr!

Flying commerical is getting ridiculous. I swear, if I could find a leftover New York Air jet, I’d buy the thing. It’s already red… I’d repaint the apple symbol on the tail to look like a heart, hire a crew, and rename it Heart Force One! President Obama would be jealous, but he’s got a better car than I do.

Air Travel is difficult enough for anyone with a chronic illness. You need to make sure you have all your required medication – plus extra, just in case. Always take extra, you never know what might happen. When I was in DC in 2007, the airport was closed when I arrived for my flight home. It reopened an hour later; as you can imagine, all of the flight schedules were scrambled. The airport book store loved me – I read two magazines and a book on the Lincoln Assination before I got out of there!

Never, ever pack your medicine in your checked baggage: You may be heading for Dallas but your bag may get on a flight for London. If you have liquid medication, you have an exemtion to the Transportation Security Administration’s (TSA) 3-1-1 rule: your liquid medication can be in a container larger than three ounces. You still have to declare it and it has to be inspected, and the smart traveler will have a copy of his/her prescriptions. I always assume that Mr Murphy is traveling with me! Plan for the worst and it won’t happen. If it does, you’ll be ready. The TSA makes things a little bit simpler for us by having a page dedicated to travelers with disabilities. Still, flying can be a pain in the… ankle!

But if my plans involve advocating for Congenital Heart Defect survivors, I’ll put up with the hassles of flying. I enjoy that part of travel, and it is important to me.

So keep your eyes open for a candy apple red jet!

Don’t mess with a good thing

January 30, 2009

I was in my local cardiologist’s office, having problems. I was having dizzy spells and nausea, and each time I had those symptoms, I also had a heart flutter. This day was not shaping up to be one of the best.

Important Safety Tip: If you have a Congenital Heart Defect, you need the services of a very good cardiologist. Since my Adult Congenital Heart Defect Cardiologist is in Atlanta, I also have a local cardiologist that I see. He’s not an Adult Congenital specialist – I know, I’m breaking my own rule – but he’s a smart guy. If he’s faced with a situation he can’t resolve, he’ll call my Doc in Atlanta rather than insisting that he can figure it out himself.

The day had started pretty good. I was up early because it was a day that I was scheduled to work at the museum, and during breakfast my face got hot and I got dizzy. At the same moment I felt as if I was going to throw up, and I felt my heart skip a few beats. That’s unusual, especially considering that I have a pacemaker. But it passed in just a second, so I just mentally marked it as “One of those things”.

But then it happened again while I was getting a shower. Ok, once is a glitch, twice… twice is a problem. So now I was sitting in my local cardiologist’s office.

After an examination and X-Rays, the doctor’s next step was to interrogate the pacemaker. The word interrogate brings to mind memories of the TV show Homicide: Life of the Street. But that is almost the way it works: An electronic device communicates with the pacemaker and asks “Hey, what’s going on in there?”

Thankfully the cure was a simple one. A week earlier in I had stopped by the Pacemaker Clinic in Atlanta for my  yearly check. Your pacemaker clinic will check the pacer via telephone every few months, but at least once a year they want to see you in the home office. Not only do they get a better reading with you being monitored in person and not over a telephone line, but the best diagnostic tool ever invented is still the eyeball.

“I think we can turn your pacemaker down a little bit,” the pacemaker tech in Atlanta had told me. I was all in favor of that: Pacemaker batteries normally last 10 years or more, but because of my unusual heart, mine had worn out in less than three. So if they could do anything that would save the battery, I was all for it.

It turned out that my heart needed to be fully paced… tech-speak meaning my pacemaker needs to be running at full power all of the time. Turning the power down had set me up for the missed beats, the nausea, and the dizziness. Bummer!

But having a good local cardiologist kept me from making an emergency trip to Atlanta, so having a good local doctor is something you may want to think about.

Anna saved us all

October 6, 2008

I’m leavin’ in a minivan,

should be back Wednesday night…

Wait a minute, that doesn’t rhyme. I guess my career as a songwriter isn’t going anywhere.

I’m packed for the trip to Atlanta, the laptop is also packed and the batteries are charged, so I should be able to post tomorrow night. Of course, you’ll get a full report once I return home. I’m feeling good and not expecting any problems, though my weight is up a little bit. So the doc may wave his finger in my face. He won’t have to crack the whip too hard; I don’t like for it to be up either. When you have heart failure, your weight creeping up might mean there is a problem brewing. And even if it doesn’t, your heart has to work harder. That’s not good.

First, here are a couple of links that you need to read: Researchers have discovered that a new type of drug can trigger a heart defect in unborn mice. The chemical in question is fairly common, so if you are planning to have children (or more children), clicking these links would be beneficial!

But let’s not get ahead of ourselves; the sky isn’t falling (yet). Taking the results of a research study using unborn mice and saying that we’ve found a way to prevent heart defects is a giant leap, but it is certainly worth continued study.

Is animal research necessary? I have to answer with a resounding “YES!” When he was designing the first congenital heart surgery, Vivien Thomas first had to study the effects of Tetralogy of Fallot (ToF) in a test subject, then figure out a way to correct the defect. Conducting experimental surgery on children with ToF was completely out of the question, so Thomas first had to surgically re-create the defect, then devise a corrective procedure to counter it.

His test subjects were dogs, most of them supplied by the Baltimore City Pound. Thomas is said to have performed heart surgery 200 times or more before Alfred Blalock attempted it on a child, so we must assume that most of those operations were failures. The dogs almost certainly perished.

Finally Thomas figured it out, and not only did the dog (a “mutt” named Anna) survive the procedure that “gave” her a defective heart, she made it through the operation that corrected it. Thomas then taught Blalock the operation (again, on a canine test subject) and on November 29, 1944, with Thomas standing behind him giving him guidence and advice, Blalock performed the first operation designed to relieve a Congenital Heart Defect. (Click this link for a “Who’s Who” in the operating room!) The operation eventually became known as the Blalock-Taussig Shunt. Anna became the mascot of the Johns Hopkins Surgical Lab and lived there until her death in 1957. She even had her portrait hung in the Hospital.

While animal research may be necessary; animal cruelty is not. My personal rule of thumb is “Would I do this to my family pet?” If the answer is no, then that test is not done. (And this standard can be subjective; my dog is not my pet, she is a member of the family. A neighbor who owns hunting dogs does not think of them as his pets, rather they are “tools”. Their main purpose is to do a job: Tracking deer.) So even going by my own rule, Thomas would have never invented cardiac surgery. Because I couldn’t do that to my dog.

So now, all I’ve done is muddied the water! While you are contemplating the fine line between animal research and animal cruelety, carry a couple of doggie biscuts in your pocket and be sure to toss one to a stray. Because if it wasn’t for a mutt named Anna, none of us with a heart defect would be here.