Posts Tagged ‘Adult Congenital Cardiology’

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!

Advertisements

GAMECHANGER

July 10, 2010

You won’t see many Saturday editions of Adventures of a Funky Heart! But then again, I don’t find important news like this every day:

…as the American Board of Internal Medicine voted unanimously for the Adult Congenital Heart Disease (ACHD) sub-specialty to be approved for board certification – the American Board of Pediatrics had previously signed-off on the new sub-specialty.

(Emphasis mine)

As I have mentioned before, seeing an Adult Congenital Cardiologist is critical to the care of a person with a Congenital Heart Defect. Adult Cardiologists, for the most part, aren’t very familiar with congenital defects. They are trained to deal with the problems that develop in a healthy heart as a person ages – clogged arteries, Cholesterol problems, and heart attacks. Adult CHDers won’t have those problems – or they will manifest themselves differently than would happen in a “normal” heart. So we need to be seen by an Adult Congenital Cardiologist.

But there are no Adult Congenital Cardiologists – not really. We do have a small group of people who have the experience needed to care for Heart Warriors, but there is nothing on paper. My doctor, for example, is Co-Director of the Adult Congenital Cardiology program at a major hospital…. but his license says he’s a Pediatric Cardiologist. And at one time he was; he just kept following his patients for as long as they needed him, and he’s “grown up” with the rest of us.

Since there are no “official” Adult Congenital Cardiologists, what does the approval for board certification mean? Simply put, there will be licenced, certified, diploma carrying doctors who can care for us in the future. Because now, it is going to be official.

There is going to be training for Adult Congenital Cardiology. (There already is at Mayo Clinic.)

There will be an oversight group.

And there’s going to be a test – a test you have to pass before you can legally claim to be an Adult Congenital Cardiologist. (I am not sure about what the plan is for the people already working in the field, such as my doctor. Usually there will be a way for them to be “grandfathered” in – have a certain amount of experience and pass the test, and you are board certified.)

Things won’t change overnight – Adult Congenital Cardiologists will still be few and far between, at least at first. If we’re getting good care now, it probably won’t pay for us to drop everything and go running off looking for a new doctor. But for the Cardiac Kids who are growing up, there will be more and more doctors able to take care of you after you become an adult. And hopefully along with the new certification program, doctors will work on a transition program. So Pediatric Cardiologists can help their older patients move on to adult oriented care. Because I’ve visited Pediatric Cardiologists before, even when I was in my 30’s. I’ve tried to get my adult body into those tiny chairs – the ones so low that your knees are level with your eyeballs.

It’s a great day – everybody wins. But the people who will benefit the most are the Cardiac Kids who aren’t quite here yet.


On today’s agenda: Vision 2020

April 23, 2010

I hold in my hands the future of Adult Congenital Cardiology: the Adult Congenital Heart Association’s (ACHA) Vision 2020 Phase 1 Report. The long-term goal of Vision 2020 is to make Adult Congenital Cardiology an established, recognized field that will deliver quality care to adults with Congenital Heart Defects throughout the United States.

Begun as an initiative of the ACHA in December of 2008, the goal of Vision 2020 is to ensure that every Congenital Heart Defect (CHD) Survivor be able to receive life long Adult Congenital Cardiac care after they turn eighteen. This care will be 1) High Quality; 2) Age Appropriate; 3) Research Based; 4) Coordinated and Integrated; and 5) Available in all regions of the country.

Although over one million adults in the United States live with a Congenital Heart Defect, it is estimated that 50% to 90% of them are not receiving regular care by an Adult Congenital Cardiologist. To reduce this number, four working groups have been created:

1) Program Accreditation – dedicated to creating policies and procedures that will create a legitimate credentialing systems for Adult Congenital Heart Defect (ACHD) programs.

2) Regional Care – will focus on determining the total number of Congenital Cardiology assets in a region of the country and determine the best way to transition a patient living in that region from Pediatric care to Adult care.

3) Workforce – tasked with determining and creating the educational and experience criteria needed to be certified to provide Adult Congenital care.

4) Business Model – most, if not all, Adult Congenital Heart Defect Programs will be part of a larger institution or hospital. The Business Model Working Group will help determine the best ways the ACHD program can contribute top the overall financial health of the larger institution.

It is an ambitious document, and the obvious question is – will it work? In its original form, almost certainly not. No plan is perfect from the outset, it will almost certainly be rewritten as time passes and new challenges emerge. Reality  2020 may very well be much different than what the Vision 2020 plan envisions.

But the number of adults with a CHD grows about 5% per year. There is already Adult Congenital Cardiology training going on, but almost all of it is informal. The doctors who have served us over the years are guiding younger Cardiologists who have shown an interest in Adult Congenital Cardiology. So with the patient population growing and informal training already taking place, it is only a matter of time before a medical school begins to offer specialized courses. And when you have formal medical training, you’ll soon have a specialty. And then you’ll need someone to decide what exactly makes a doctor a specialist; and how many specialists and what kind of services need to be offered to be accredited.

And in the long run, this isn’t really for adults. The story is told of the Country Music Superstar who was approached by a songwriter with a nifty little Christmas tune. At first he turned it down flat, but then his wife said “Have a heart, this song won’t make much money but just do it for the children.” So he called the songwriter back and made the recording. The singer was Gene Autry, and the song was Rudolph the Red Nosed Reindeer.

This isn’t for us –  it’s for the future generations. At Lobby Day 2010 yesterday, one of our older members (early 60’s) told a twenty-something year old CHDer “Remember what you have seen here today. One day, it will all be up to you.”