Posts Tagged ‘ACC’

Five CHD Questions: When?

May 12, 2010

When are Congenital Heart Defect (CHD) survivors at their most vulnerable?

There are two schools of thinking in the CHD world. For lack of a better term, we’ll call these two philosophies “Old School” and “New School”.

The Old School is what Cardiologists used to tell CHDers and their parents: Now that the child has his/her surgical correction(s), they are “fixed”! Certainly, they may be a step slower, not be able to do as much, can’t play as hard as the other kids, but their defective heart has been repaired and they are set for life. All is well that ends well!

New School is the reality: As time passed as the early survivors began to grow into adults, they started having problems related to their deformed hearts. Finally it was realized that just maybe that original repair wasn’t permanent, and some of the old problems were coming back. So now, New School Cardiologists tell their patients that while they are repaired, a CHDer needs lifelong care by a specialized Cardiologist to make sure that those problems stay under control.

Be warned, the Old School of thought still exists, despite all the evidence to the contrary. Old School thinking exists on several levels – not only does it include the fallacy of “once repaired, totally repaired”, there is also a segment of the population who think Heart Defect = Death Sentence. Such thinking is toxic and you do not need this in your life: The best thing you can do if you should run into someone with an Old School mindset is to RUN!

The most dangerous time for a CHDer is when he/she begins to transition away from their Pediatric Cardiologist to an Adult Cardiologist. Most Adult Cardiologist deal with Acquired Heart Disease, not Adult Congenital Heart Defects (ACHD). Acquired Heart Disease are heart problems caused by diet, clogged arteries, hardening of the arteries, high cholesterol, and the natural aging of the heart. Someone with a Congenital Heart Defect will not have these problems, or they will manifest themselves differently in our bodies. So we need someone experienced with caring for Adult Congenital Cardiac patients – an ACHD doctor.

The problem is, there are currently very few ACHD doctors available. In an interview recently posted on Adventures of a Funky Heart!, Dr. Michael McConnell gave an example: There are about fifty Pediatric Cardiology practicing in the city of Atlanta, Georgia, but only two part time ACHD Doctors.

ACHD doctors can be found, though it may take some searching. The Adult Congenital Heart Association (ACHA) offers an ACHD Clinic directory for the United States and Canada on their website. (ACHA Membership is free). ACHA is also pursuing Vision 2020, a proposed blueprint for Adult Cardiological Care in the 21st Century.

Vision 2020 builds on the Bethesda 32 Report produced by the American College of Cardiology. Bethesda 32 was produced in 2000 and addresses the issue of Adult Cardiological Care. (The name is derived from the 32nd meeting of the American College of Cardiology’s yearly focus group held in Bethesda, Maryland.  The group studies a different issue each year.)

The Bethesda 32 Report divides the known heart defects into three groups – “Mild”, “Moderate”, and “Severe” and recommends the proper level of care needed for each group. While someone with a “mild” heart defect – a very small unrepaired Atrial Septal Defect (ASD), for example – can usually be cared for by the general medical community with yearly ACHD checkups, someone with a “Severe” defect (my Tricuspid Atresia, for example) needs to be seen in at an ACHD Clinic regularly. Severe CHD patients should also consult with their home clinic before undergoing most medical procedures, getting pregnant, etc.

There is a good outline of the Bethesda 32 Report HERE; you can read the report online by clicking THIS LINK. Click “Print a PDF” from that page to print out a copy of the Report. Be prepared; it is over 60 pages long.

Having a copy (or several) of Bethesda 32 can come in handy when/if your insurance company balks at providing coverage for an out-of-network doctor. The report can be used to show established medical guidelines saying that you need to be seen by a specialist.

The profile of the “average” Heart Defect Survivor is changing, as there are currently more adult survivors than there are children. Congenital Cardiac Care is slowly changing to reflect this.

The ACC… and Philadelphia!

March 14, 2010

No, not the Atlantic Coast Conference! (In that ACC’s Men’s Basketball Tournament, today’s championship game will feature Duke vs. Georgia Tech – a pretty good matchup!) I’m talking about ACC10, the American College of Cardiology’s annual scientific session being held in Atlanta, Georgia.  Atlanta’s not far away and I hoped to be able to actually attend it myself, but neither time nor money are on my side. But I have a couple of friends down there, and I’m keeping an eye on the Congenital Cardiology presentations. If there is anything that looks interesting I’ll pass it along. You can follow along yourself by searching for the #ACC10 hashtag on Twitter!

Also everything has fallen into place and I am off to Philadelphia in April! There aren’t any public appearances scheduled – I’m going the main office of the Adult Congenital Heart Association to help prepare for Lobby Day 2010; then take the train down to DC to actually be a part of Lobby Day myself!

My plan is to liveblog Lobby Day, just like I did last year. There is still time for you to be involved – click the Lobby Day 2010 link for information on registration and the host hotel!

Maximum IMPACT!

September 9, 2009

It’s starting to happen, folks!

An article in the Wall Street Journal last month noted that a lot of advances in pediatric medicine came about because adult treatments had been adapted for use in children. “We adopt things known to work in adult patients in pediatrics because we’re sort of desperate,” the article quotes a Pediatric Cardiologist. That’s pretty depressing – the research and the technology doesn’t exist yet, so new strategies have to be developed “on the fly.” Dr. Jack Lewin, the Chief Executive Officer of the American College of Cardiology (ACC), wrote a few days ago about the lack of Congenital Heart Defect knowledge/experience in some countries. The only realistic chance those children have is to travel to another country for Congenital Cardiac Care.

Dr. Lewin and the ACC are drawing a line in the sand with the new IMPACT (Improving Pediatric and Adult Congenital Treatment) registry. In the pilot stages right now, IMPACT begins for real in 2010 and will gather data on outcomes on CHD interventions done by Catherizations. It will also incorporate data from surgical procedures to give a better look at what works… and what doesn’t.

This looks like what we’ve all been waiting for… the beginnings of a nationwide Congenital Heart Defect registry that will improve Congenital Cardiac Care for everyone who has a Funky Heart!

REPAIRED, not fixed

August 7, 2009

“We are home from the hospital! Our daughter’s heart is fixed,” the blog post says.

While I am glad that the child has been released from the hospital and is on the way to recovery, you need to understand something: A heart defect is never completely “fixed.” It requires lifelong care – even if you have a “minor” defect, such as an Atrial Septal Defect (ASD).

Even if a defective heart can function correctly through surgery, it is still defective – it is not the same as a normal cardiac organ. It’s not as strong, blood flows in strange directions, and there are probably structural problems. Even with a heart transplant, the patient still has to take anti-rejection medication.

As the person grows and ages, so does their heart. Repairs done at an early age can wear out and need to be done again. Here’s an article about a Ventricular Septal Defect (VSD) repair done by catheter rather than traditional surgery, but that isn’t what I want you to see. Read the fourth paragraph:

After many years, the patch that was used to correct the defect began to tear and needed to be repaired.

Ut-oh. So if you have a heart defect, you need to take care of yourself – forever. The first thing you should do is read the Bethesda 32 Report. Every year, the American College of Cardiology (ACC) holds a meeting in Bethesda, Maryland, to focus on one important issue. The discussion of the 32nd meeting was centered on the care of adults with heart defects. The Adult Congenital Heart Association (ACHA) has an information page here; the full text can be found here. The full text link has an option to print the report as a .pdf file (It’s long!) or page down a little for a phone number to order a copy from the American College of Cardiology. I don’t know if there is a cost; I downloaded and printed the .pdf.

The ACC has classed all heart defects into one of three groups: Simple, Moderate, and Complex. Those of us with Simple defects can usually be cared for in the general medical community; Moderate and Complex defects need to be seen at an Adult Congenital Heart Defect clinic periodically. (My defect, Tricuspid Atresia, is considered Complex.) We could also need to take special precautions during non-cardiac surgery and dental appointments, and make various other adjustments to our lives.

90%+ of all children having Congenital Heart Surgery will live to adulthood, and there is no reason they can’t have full lives. But we need to realize that we have to take extra steps to take care of ourselves.

Then we can go conquer the world!

More and more friends!

December 12, 2008

Funky Heart has another friend! Meet Jillian!

There’s getting to be a lot of us here, and I would be remiss if I didn’t mention Lobby Day to our newcomers. I’ve already signed up, and I have my hotel reservation. There’s still time to sign up if you want to attend!

Lobby Day is sponsored by my CHD support group, the Adult Congenital Heart Association (ACHA). A lot of other CHD support groups are involved, and you do not have to be an ACHA member to participate. We’re lobbying for a National Congenital Heart Defect Registry – if we can create a database of as many CHD survivors as possible, we can study the resulting statistics and determine what treatments work, which ones don’t, and perhaps come up with better treatments. And maybe reduce some medication needs.

I understand that not everyone can just put their lives on hold long enough to travel to Washington. So as Lobby Day gets closer, I plan to show you how you can help support Congenital Heart Defect research from the comfort of your own home.

One thing you can do to help yourself (or your child) is to read the Bethesda 32 report. What is the Bethesda 32 Report? Every year, the American College of Cardiology meets in Betheda, Maryland. At their 32nd annual meeting (which is where the term “Bethesda 32” comes from), they presented a paper entitled “Care of the Adult with Congenital Heart Disease”.

As the title implies, the report is geared toward adults. But there are important points that apply to all people with Congenital Heart Defects. All thirty five defects are divided in to categories, with moderate and severe defects needing more advanced health care options.

Bethesda 32 is almost required reading for anyone associated with a CHD, either as a survivor or as the parent of a cardiac kid. You can read the highlights at the ACHA webpage, or download a two page .pdf  fact sheet here.  Read the entire report online at the American College of Cardiology’s website, or print out the entire report here. (Be prepared, it’s 38 printed pages!)