Posts Tagged ‘Adult’

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.

Heart Repair of the Future

November 11, 2009

Here are two articles you need to see – one is from August, about literally “building” a tooth from stem cells, and one from just a few days ago about The Stanford University School of Medicine and the Gladstone Institute of Cardiovascular Disease working together to use stem cells to repair damaged heart muscle.

This is where cardiac research is going, though no one can predict how long it will take to get there. A lot of trials, most of them on animals, are being done to evaluate the usefulness of Stem Cells. Just the phrase stem cells generates controversy and starts a debate about the ethical use of Embryonic Stem Cells. Personally, I am opposed to the destruction of embryos to gather stem cells – but embryos are not the only source of embryonic stem cells. Cord blood, anyone?

And there may not be any need for controversy. It looks as if Adult Stem Cells work better, at least in heart muscle. But don’t go running to your doctor just yet, we’re still years away from this being useful.

And unfortunately there are still going to be cardiac surgeons and people with zippers for years to come: I doubt that we will ever totally eliminate the need for heart surgery, especially in CHDers. But through the use of artificial heart tissue (like the tissues that are being developed at Clemson University) and Stem Cells, I think Cardiac repair will be a lot different twenty years from now!

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.

I was here as a Child…

August 17, 2008

Back when Adult CHD’ers were Cardiac Kids, doctors would often tell our parents that our operations had fixed our heart. Sure, we might have some limitations due to Cyanosis, but kids can learn to live with that. The important thing was that we were A-OK!

Time passed, and one fact become glaringly obvious: We weren’t A-OK.

No one had been lied to. Congenital Cardiac Surgery was a young field, and there were practically no older survivors to draw data from. Our doctors were sincere when they believed that our heart problems were in the past. Perhaps part of it was a feeling of relief that the immediate crisis had been dealt with. The patient was stable and should survive. Ergo, we were “fixed”.

But as someone with a Congenital Heart Defect ages, they can begin to to have some of the problems that heart-healthy people do. Granted, we probably won’t have the same problems, but age gets to all of us. And a good percentage of us may hear those dreaded words, “I think we’re going to have to operate…”

Often our first surgery was done as soon as it became apparent that we were sick. Lots of Adult CHD’ers have “We need to operate NOW!” stories from their early years. But if we are getting proper medical care, a good cardiologist can detect the subtle changes in our adult heart that are the first signs of trouble, and with luck we have a “heads up” and can prepare for surgery. When an Adult CHDer is facing a possible heart surgery, he or she needs to ask several specific questions.

“What kind of tests do we need to do before the operation?” A surgeon isn’t going to open you up just to look around and see if he can find the problem. You’ll certainly have to have some X-rays taken, and quite possibly a CAT scan or an MRI. Your Cardiologist may even order a Catherization to get a good look at the heart structure.

“What exactly do you plan to do to me?” The answer is going to be based on what the results of the various tests are, plus the Cardiologist’s report on what is going on inside of your heart. A good surgeon has the operation planned out in advance, and he has a back-up plan in case there is a problem.

“How much experience do you have doing this type of operation?” A poster on the Adult Congenital Heart Association message board once stated that he needed to have a valve replaced. His aunt had recommended the surgeon who had performed her husband’s bypass surgery, and he was going to meet with him.

He’s getting off on the wrong foot already. What he needs is a Congenital surgeon, someone who has experience cutting into the heart. A Bypass surgeon doesn’t normally do that, so he is not the right person for this operation. And even though she means well, the aunt needs to be told just to leave well enough alone. When it is her health, she can make the decisions. Until then, no dice.

And don’t be alarmed if you find that the best Congenital surgeon for you is a Pediatric surgeon with adult experience. Most of the Congenital Heart Surgeries being done today are performed when the patients are children, so the children’s surgeon could be just the person for you… even if you are in your 30’s.

“Which hospital are you planning to use? How much experience do they have with this type of operation?” You’ll probably have to contact the hospital or the state health department to learn how much experience the hospital has with your planned surgery. Having the best surgeon in the world won’t do you any good if the Recovery Room staff can’t start an IV correctly. Make sure that they know how to care for someone who has had your type of operation. And once again, Congenital surgery and Bypass surgery are not the same thing, and competence in one field doesn’t always translate into competence in the other.

“What can I do to assist in my recovery?” Moaning in your hospital bed isn’t helping, and it is probably driving your roommate batty. Do something that will help you heal faster.

“When can I go back to work?” That’s your ultimate goal: to get this behind you and get your life back on track. You’ll be released from the hospital first, with lots of limitations. You’ll also have some informal exercises or perhaps a formal Cardiac Rehab program. Follow the doctor’s instructions! You’ll be able to do more, do it quicker, and won’t hurt yourself. And soon the answer to the “go back to work” question will be “Next week should be fine, if you take it easy.”

You won’t mind the boredom of your job; you’ve had quite enough excitement for a while!

Best Care Anywhere!

August 11, 2008

In the CBS TV show M*A*S*H*, there was a banner hanging in Rosie’s Bar that read:



If you are an adult with a Congenital Heart Defect, this is what you need. No, not Hawkeye Pierce and B.J. Hunnicutt cracking jokes and curing you in 30 minutes; you need “the best care anywhere.” After all, you have an unusual heart that has probably been altered by at least one surgical procedure. You have reached adulthood and are beginning to ask questions that perhaps your pediatric cardiologist can’t answer. You are interested in starting a family, but aren’t sure if your heart is strong enough for pregnancy. You’ve got questions about your heart and you need better answers.

You very well may need an Adult Congenital Heart Defect Cardiologist. The way I look at it, my heart presents a set of unique problems that not everyone can deal with. It’s not that I want, but rather I need medical services that are hard to find.

So where does an adult CHD’er start? A good starting point is the American College of Cardiology’s 32nd Bethesda Conference Report. In 2001, a group of Cardiologists were called together to study the problems faced by adults with CHD’s and make recommendations on how to best serve this group. The ACHA provides a summary page of the meeting, but a better thing to do is to read the entire report. You can download the report as a PDF file here. Give it some time to download; it’s pretty detailed. At the same time, it’s pretty readable. And it is almost a must read for ACHD’ers.

Bethesda 32 groups heart defects into three groups: Simple, Moderate, and Complex. Simple defects — there are “simple” defects, the report cites several — can usually be monitored by the general medical community. As an example of a “simple” defect, consider the Patent ductus arteriosus I mentioned in an earlier post. The Ductus Arteriosus is designed to disconnect itself and close shortly after birth. Sometimes it doesn’t, and doctors have to disconnect it manually. Since it was supposed to disconnect anyway, once the connection is severed it shouldn’t be a problem anymore.

Those with Moderate or Complex heart defects need lifelong medical care and under ideal conditions they would be routed to regional Adult Congenital Heart Defect centers as they reached adulthood. Nothing is ideal; a Google search for “List of ACHD centers” causes Google to ask if I’m looking for ADHD (Attention-Deficit/Hyperactivity Disorder) centers!

This is one of the many benefits of joining the Adult Congenital Heart Association. Membership is free, and we maintain a list of Adult Congenital Heart Defect centers. If you feel you need a ACHD center (or you fit the profile in the Bethesda 32 Report) search the list and find one that appeals to you.

Be prepared to travel. There isn’t an ACHD center in every state, unfortunately; or perhaps the one 300 miles away seems to meet your needs better than the one 75 miles away. One of the best ways to make a quick evaluation of a center is to see how many patients they see: Experience, after all, makes you better at what you do. You wouldn’t expect to find an expert in hypothermia in Florida, and the National Weather Service isn’t going to put their best Hurricane expert in Montana.

If you are an adult with a Congenital Heart Defect, you need a more advanced level of care than most doctors/hospitals can provide. So download the Bethesda 32 report, read it, and find a good ACHD center. Make an appointment. And get ready to live… you life is not over, not by a long shot!

The Tallest Kid in the Room

July 28, 2008

They always have Highlights for Children. It’s a common staple of any Pediatrician’s office, but it never seemed that they made the magazine available for home delivery. I always wanted a subscription to Highlights, because I enjoyed all the puzzle pages. But that was then. Times have changed, and now I’d rather have a subscription to a good baseball magazine. Most children aren’t that interested in baseball, so I need to bring my own.

I walk into the doctor’s office and I can feel the eyes boring into my back. I can’t see them, but I know that everyone is looking at me. When someone my age comes into a pediatrician’s office without a child, everyone stares. What’s he doing here? If they are wondering now, just wait until the nurse checks me in and tells me to have a seat.

Usually all of the adult chairs are occupied. It’s impolite to stand in the waiting room – there’s no rule against it, but I’ve never seen it done unless every seat is taken – so I sit in one of the children’s chairs. That’s an adventure unto itself. You sit down as you normally do, but you just keep going down until your bottom hits the chair with a bone jarring THUMP and your knees are level with your eyes. Now I look stupid, so I stretch out my legs. Not only am I blocking the walkway, but now I really look stupid, so I pull my legs back in. Hopefully this won’t be as bad as the time that I had pneumonia: my doctor admitted me to the hospital, and after a 4 hour wait in the ER I learned the only available bed was on the Children’s wing. It was a loooooooooong way from my rear end to the child sized toilet, and I was too far down to stand up! I literally had to roll off the seat and then get to my feet. But there was no room in the inn, you take what you can get, and beggars can’t be choosers.

Until I was 30 years old I saw my local pediatrician for non-emergencies. It works the same way for kids with heart problems. “Adult” Cardiologists can’t deal with us – they are trained to deal with heart attacks, clogged arteries, and all the problems that your heart develops as you age. They usually don’t have experience dealing with Congenital Heart Defects (CHD). A friend of mine – also a Cardiologist – once said that if you chose to specialize in Adult Cardiology, you received about two hours of training in CHDs. Basically just enough to know that they exist. So no matter our age, Cardiac Kids are still patients of a children’s doctor.
But now there’s a new specialty, known as an Adult Congenital Heart Defect doctor. Adult Congenital Defect care is not taught at any medical school (yet); many of the ACHD docs are really Pediatric Cardiologists. Since their patients stay with them practically all their life, these “children’s doctors” found themselves dealing with questions about work, pregnancy, dating, insurance… questions that Adult Cardiologists usually have to answer. And so the field of ACHD Cardiology was born.

You won’t find one on every corner, but ACHD care can be found. Usually, you’ll need to go to a major medical center. I live in rural South Carolina; the ACHD centers in the South include Duke University, Emory University, and the University of Alabama at Birmingham (UAB). Other major centers include The Mayo Clinic, Stanford, the Philadelphia Adult Congenital Heart Center and Children’s Hospital of Boston. There are other clinics, of course, but those are the ones that spring immediately to mind. And now, the waiting rooms have people who are more in my own age range.

I miss the visits to the Pediatric Cardiologist, though. While I’m sitting there trying to get comfortable, absorbing all the stares, the kids don’t pay a bit of attention to me. Kids are kids, they are usually congregated in the play area, getting along famously and having a great time. For once, they aren’t being left behind on the playground – everyone is moving at about the same pace.

The parents are the ones sitting there with the worried look on their face, with good reason. I always hope that one of the parents will speak to me, perhaps ask if my child is sick. If they do, I’ll tell them that no, I’m the one with the heart defect. My parents were in the same boat you were. I’m 41 now, and still going strong. And hopefully someone will come to believe that with good medical care and a little good fortune, their child will do well.