Posts Tagged ‘Duke’

Spreading the word

August 2, 2009

I’ve spent all week sorting through what I want to say about last week’s Congenital Heart Defect (CHD) Symposium in Durham; it has taken me this long to try to come up with words that don’t sound so corny that my readers throw up their hands in exasperation. I’m not sure that I have been successful, but here it is.

I have never been to the hospital at Duke, they they have a very reputable Adult Congenital Heart Defect Clinic and I have always kept them in the back of my mind as an alternate in case I needed a specialized Cardiologist and my team at Emory wasn’t available. Their facilities are very impressive; if you were to pick your hospital based on appearance alone Duke would be a contender. Very clean and wee kept, and modern facilities. I smiled when I got onto the elevator and saw one floor marked as the Jim Valvano Day Hospital. Duke and N.C. State fought some wars on the basketball court; and you know that even though they won most of their contests, the Duke faithful were glad to see Valvano and his team load the bus and drive away. Now they can’t get rid of him.

The sessions were interesting and informative – even the session that I didn’t quite “get” for Funky Heart readers. Perhaps it was late in the day, or perhaps it was that I was looking for any signs of abnormal brain development in myself. I’ve always been a bit forgetful, one of those people who needs to write something down if they expect to remember it. I’ve always been that way, for as long as I can remember – and with a pulse oxygenation level of 80%, I just have to wonder.

But on to the important part: I had a strong feeling that I would be speaking mainly to Heart Parents, and used that group as my target audience as I wrote my presentation. I was correct; the attendees were mainly heart parents, and the oldest child I saw was about 7, I believe. And the parents were all young – my age and almost certainly younger. (There was one older couple, who I assumed to be Grandmother/Grandfather) It struck me that I could very well be the first adult with a heart Defect that these people had ever met – in a way, I represented what they hoped for and dreamed about for their children.

I got emotional several times as I spoke, but had promised myself not to break down completely. Not because Heart Defects can’t be an emotional subject, nor did I think some of the audience would think I was fishing for sympathy. I was supposed to be there speaking as a CHD Survivor, I could stay home and have a good cry! I wanted to use the limited time I had wisely. But I was able to get the audience to laugh, also, and humor is supposed to cure a lot of ills.

We broke for lunch after my session, and many of the parents thanked me profusely for coming. They were glad I had spoken, and I seemed to have encouraged them.

And it encouraged me, too. I felt like I was walking on air, just glad to be there and happy to contribute in some little way. I think that standing up helped me see another side of myself, and it helped me just as much as it helped those parents in attendance.

This is something we Heart Warriors need to be doing a lot more of – encouraging the parents of young Cardiac Kids. This is something I personally need to be doing a lot more of. So I am activity looking for more opportunities to speak.  I’m still here, and although I have my fair share of the little bumps and bruises that life dishes out, I’m enjoying my life. Maybe I can say something that would show you how to help your Cardiac Kid thrive, too.

Have heart, will travel;

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.