Posts Tagged ‘Adult Congenital Cardiac Care’

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.

Fix the Problem!

November 4, 2008

UPDATE, 6:12 AM Eastern Time: Katie is on my mind again… Preliminary reports suggest that the surgery may not have helped her that much, if at all. Get over to her website ASAP and encourage her parents.

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Great news from the National Institutes of Health (NIH) and the Adult Congenital Heart Association (ACHA)… The NIH’s Partners in Research program will fund the ACHA’s first Adult Congenital Heart Defect research study! Titled the “Health Education and Access Research Trial in Adult Congenital Heart Disease”, (HEART-ACHD for short) the study will attempt to learn why those of us with Congenital Heart Defects often “fall through the cracks” after childhood and no longer receive good cardiac care.

This is a two year study, and ten of the largest Adult Congenital Cardiac Care centers are involved. Heart Moms and Heart Dads may not be very interested in this results of this study, but it is more important than you think. Imagine that moving from Pediatric Cardiology to Adult Congenital Cardiac Care is like crossing a river…. but the bridge has a huge hole in the middle of it. Some of us, by luck or design, are able to walk around the edge of the hole without falling in and continue with good heart care. Others stumble, and fall in the river. If we’re lucky, we catch something as we fall and are able to pull ourselves back onto the bridge, while others aren’t so fortunate.

Lifelong cardiac care is so important, especially to someone with a Congenital Heart Defect. As you age, not only do you have the problems you were born with, but also the effects of age began to set in. We’re susceptible to Cholesterol problems and clogged arteries, just as everyone else is – but with our bad hearts, the problem may manifest itself in a different form. So the transition from our “kiddie doctor” to an Adult Physician is critical, and right now there are too many ways to get lost in the shuffle… fall through the hole in the bridge, so to speak. Hopefully this study will give a “repair crew” something to work with as they repair the bridge and make the road to lifelong medical care safe to travel!

Not on MY life!!!

October 9, 2008

This is unreal.

My hospital is not going to be doing the prothrombin test anymore: That’s the test of the Warfarin level in my blood that gives me my INR number. And it isn’t really their fault — their accreditation agency told them to stop offering the test. Apparently, if your Hemocrit is above 55%, they have to hand-calculate the results to determine the correct INR. The hand calculation means they can not guarantee the accuracy of the results, and so they ordered the hospital lab not to offer that test anymore.

I’m not mad at the lab techs. They are some of the nicest people I’ve met, and always bend over backwards to help me out or to hurry up the process if I ever need a test rushed. And they can still do the CBC test for me. But I’d really like to talk to someone from the accreditation agency. if you aren’t offering this test to people with a Hemocrit over 55%, what about the patients in the hospital? And if you suddenly can’t speak for the accuracy of the results, then what about all my previous results? I’ve had that test done once a month for SIX YEARS; are those results suddenly no good?

But like I said, I’m not mad at the hospital lab. I’m not mad at the accreditation agency, though if I sat down and asked them some questions, I’d probably be steaming before we were through. You are about to meet the people I am really mad at.

Before I even knew there was a problem, my doctors and nurses in Atlanta learned about it and were trying to work out the problem. One of my Nurses Googled my area and found this group of doctors, who have an office about half a mile from the hospital. She called them, explained the situation, and asked if they would be willing to do the prothrombin test for me.

Now don’t let the fancy name fool you. They aren’t a state agency, what they are is a group of 24 cardiologists who, along with their Nurses and Nurse Practitioners, work at five offices spread throughout the middle part of the state.  So my Nurse asks if they are set up to do a prothrombin test on a patient with a Hemocrit above 55%.

Certainly! came the answer.

Can you do it for a local patient of ours, and forward the results?

Absolutely not.

Before they will do a lab test for me, I would have to transfer all of my cardiac care to them. Look down their list of doctors — there is not a Pediatric Cardiologist in the entire group, much less an Adult Congenital Heart Specialist. But they are arrogant enough to demand that I leave the doctors and nurses that I trust, and who specialize in care for my heart, before they would stick a needle in my arm.

I’ll answer them with the same answer they gave my nurse: Absolutely not.

South Carolina has the highest death rate from heart disease in the country. Heart disease – the problems you have when you age, nasty stuff builds up in your arteries, and you have heart problems because of that. If you have a heart attack followed by a bypass, these are the guys for you. Congenital Heart Defects are pretty consistent throughout the population: 1 in every 125 people have a CHD; slightly more in some areas; slightly less in others. The composition of their staff shows that they are not interested in dealing with Congenital Heart Defects; I guess it just isn’t a “growth industry.”

And that is why I am miffed. They have offices in the larger cities, but they also have some offices in smaller areas. It would be the perfect situation for them to hire a Pediatric Cardiologist and move him/her between these smaller offices, providing good health care to sick kids (and adults) in the rural parts of the state. But it seems that they are chasing the dollar bill. Maybe that heart on their sign should be green, not red.

Appointment went well!

October 8, 2008

My appointment at Emory went well! I have been feeling good and am not aware of any problems (and that is a problem itself: a heart that is getting sicker won’t always make you feel bad. A cardiac chamber that is failing won’t cause you any pain, but it will enlarge and cause you to not function as well as you once did. The loss of function happens so slowly that it can easily be passed off as the normal effects of age, and there is no way to detect a changing heart chamber without an x-ray and/or and ECG.) but for some reason I was extremely nervous before my appointment today. We’re not talking just the normal doctor’s office anxiety, but really, really nervous. If someone had slammed a door, you probably would have had to peel me off the ceiling.

And even though I was so nervous, my blood pressure was great. 102/57, which is pretty astounding. For some reason, even with a Funky Heart and blood vessels that interconnect more than the Los Angeles Freeway, my BP has always been close to perfect.

After the BP and the PulseOx test, the nurse brought in the ECG machine and hooked me up. There have really come a long way — today it takes about 20 seconds to produce the ECG sheet; it actually takes longer to place all the sticky pads on the patient than it does to run the test! When I was an infant, you couldn’t even touch the patient or the test (printed on yards of cash register receipt paper) would be invalid. The patient couldn’t move, either, which meant screamin’ young’uns like myself were very difficult. The folks finally came up with a way to get me to hold still without touching me: they’d let me starve! Whenever it was ECG time, they’d put me on the table and hold my bottle right over my mouth. I’d start sucking, being perfectly still the entire time. (Hey, eating is hard work! You have to concentrate!)

I was also able to get my flu shot! I was sitting there waiting on the doctor – you know, those few minutes that they leave you alone after the nurse finishes her examination, but before the doctor gets to you – when the nurse comes in again and asks if I want the flu shot. That was on my list of questions to ask the doctor; I had seen an ad for a drugstore that was distributing the shot a few days before and meant to ask about it. The nurse said that they were recommending them, AND had a supply reserved for the Congenital patients, so I signed the forms and got my shot!

Then my doc comes in and examines me. He always has permission to bring some of his students, so usually he enters the room with three or four young people in tow. Today is no different. I actually enjoy his teaching sessions; he switches back and forth between English and med-talk enough that I’m getting an education, too!

This has changed over the years, too. It used to be that a doctor would ask if he/she could bring a medical student into the room because “We don’t see very many cases like you.” Now he’s bringing in students because the students are choosing Adult Congenital Cardiology. And even if they don’t go that route, studying people like me will help that one day in the future when a sick kid comes into the Emergency Department and no one can make heads or tails of what’s going on. Hopefully that former student will be able to say “Wait a minute, I’ve seen something like this before…”

And although I was nervous – scared to death, actually – everything went great! I’m due back in 4 months. I will see my doctor at the Adult Congenital Heart Association’s (ACHA) Lobby Day 2009 in Washington, DC, and I hope to interview him for the Funky Heart blog. I’m sure that if I had asked today he would have sat down with me right then, but I hadn’t set anything up in advance. And to take up an extra 30 minutes of his time that I didn’t need would not be fair to his other patients, so I’ll do the interview another day.

Tonight’s musical selection is Tom Petty’s Won’t Back Down. I heard this when we stopped at a store on the way to Atlanta; I hadn’t heard it in a while and had almost forgotten how good a song it is. I hope you enjoy it too.

Why your Cardiologist is not my Cardiologist

October 1, 2008

I was at my church’s monthly Senior Citizens Fellowship today. (No, I’m not claiming to be a Senior Citizen; I was there because I’m in the group that prepares the food!) The Worship Service was over and we had moved into the Fellowship Hall for the meal.

In the course of the conversation the fact that next week I have a doctor’s appointment at Emory University Hospital in Atlanta was mentioned. Sitting at the table across from me was a distant relative of mine.

“You got a doctor’s appointment in Atlanta?!?!” he asked, in the same tone of voice you would use if I told you my doctor ran a clinic on the moon. Yes, I answered, I have local doctors but I go to Atlanta for major checkups.

“How often you go down there?”

“Usually every four months, more often if there is a problem.”

He shook his head slowly. “I don’t see why.”

“I need a specialist, and that’s the closest hospital that does what I need.”

Another head shake. “I don’t see why. When I had my heart attack, I had a doctor in Columbia. He did me right. I’ll give you his number if you want it.”

Thanks, but no thanks. Like a lot of people unfamiliar was Congenital Heart Defects, he believes that a heart is a heart is a heart. Despite what the Declaration of Independence states, all hearts are not created equal. Mine is different, and I need a whole different set of doctors.The doctors I need are Adult Congenital Heart Defect (ACHD) doctors. ACHD is not a recognized medical specialty; you can go to medical school to be a Orthopedist or a Proctologist, but not an ACHD Cardiologist.

Most of the original group of ACHD doctors (some of whom are still practicing medicine; the field is that young) started their careers as Pediatric Cardiologists. As time passed and their young patients began to see Adult Cardiologists, some of those patients started coming back to them. The adult Cardiologists seem to be lost, they complained. They didn’t understand a defective heart nearly as well as they understood clogged arteries and cholesterol, and these patients just felt more comfortable and “safer” with their childhood physicians.

Suddenly these doctors had a problem – their patients still had heart defects, but they were showing the usual signs of aging, in certain cases they needed more surgery or new medical procedures, and they were asking questions that Pediatric Cardiologists usually don’t have to answer. Hey doc, if I find the right person and we get married, should we have children? Doctor, can you call the HR department at my work? Because of my heart, they are giving me a hard time about insurance.

All of this was uncharted territory. But a trend quickly developed: this phenomena was happening more often in large urban areas than anywhere else. The reason was numbers: 1 out of every 125 people (0.008 of the population) are born with a heart defect. With the greater population of a city, the more people with a heart defect who are potentially living in the area.

So the first clinics set up to treat Adults with heart defects sprung up in major hospitals in cities. Johns Hopkins in Baltimore, UCLA in Los Angeles,  Philadelphia, and several programs in Boston are prime examples. The major exceptions to the “big city” rule are The Mayo Clinic in Rochester, Minnesota (population 100,000) and Duke Medical Center in Durham, North Carolina. (Population 220,000) – hospitals known for quality care long  before Adult Congenital Cardiac Care became an issue.

So for high quality medical care for my funky heart, I have to travel to a large medical center. I’m glad he was able to help my kin, but that heart doctor in Columbia is not the guy I need.