Posts Tagged ‘Adult Congenital Heart Defect’

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.

Road Warriors

February 22, 2010

NEWS: Zeb has to have surgery (the Ross Procedure) on Friday, February 26. His Mom, Rhonda, is a friend of mine and reader of the Funky Heart!, so I would appreciate it if my readers could help me keep an eye on Zeb!

I am packed for the trip to Atlanta – it can be a pain traveling to Atlanta for my Cardiology appointments, but it’s all a part of having an unusual Chronic Illness. You need expert medical care, and I feel that the team at Emory are some of the best.  As I’ve said before, the expert you need will not be found in a town of 5,000 people. These folks get to be experts by using their skills, and there just isn’t enough medical traffic in smaller cities. So you have to find a big hospital that sees lots of patients, and has a lot of experience to draw on. (There are exceptions to every rule, and two of the best known exceptions in Medicine are The Mayo Clinic in Rochester, Minnesota and Duke University Hospital in Durham, North Carolina.)

A recent study reports that there are only 72 Adult Congenital Heart Defect programs in the United States. So it looks like Heart Warriors will be Road Warriors for some time to come.

We do what we must do to defeat the evil that lives within us.

The 50,000 mile tune up!

August 27, 2009

Things went great at my Adult Congenital Heart Defect examination at Emory University Hospital in Atlanta – they were very through. Pacemaker check, Echocardiogram, bloodwork, finger stick to check my anticoagulation (bloodthinner) level, and the Cardiology exam. Five different doctors were in the room with me, discussing my health at one point!

I’m doing well, my Cardiovascular system is “balanced.” The Echocardiogram shows no major changes from my last one – nothing different or alarming. My Mitral Valve has a small leak and my liver is slightly swollen; but I’ve had both of those problems for years. That’s pretty much my version of normal; the Cardiologist I’ve seen for 21 years didn’t even raise an eyebrow. The only “bad news” I got was that my pacemaker battery would probably need to be replaced in 16 to 21 months.

So I guess you’re just going to have to get used to having me around – I’m not going anywhere!

Fight for your rights

July 21, 2009

An article abstract I found this morning seems to fit in with our previous post. This report notes that from 1998 to 2005, the number of adults with a Congenital Heart Defect (CHD) being hospitalized rose 67%. Thankfully, the inpatient mortality is going down, but the cost of care is going up – to an estimated total of 3.1 Billion dollars in 2005.

$3,100,000,000… I think it might be time to take up a collection!

Obviously, medical technology is working – heart defects are not the death sentence that they once were. We can almost be considered a Chronic Illness: with proper management, we can live full lives.

In a way, it’s a good problem to have: Even though we’re still fragile, more of us are leaving the hospital and going back to our lives. But Heart Defects have never been recognized as a Chronic Illness. Even though CHDs are the number one birth defect in the United States, it’s still seen as “one of those sad things that happen every now and then.”

If you want something done right, you need to do it yourself. That’s why it’s up to those of us with Heart Defects to get the Congenital Heart Futures Act out of committee and passed. It has been laid aside as the Health Care Reform debate rages; so it’s up to us to get it back to the forefront. We may have to wait until the Reform debate plays out, which means that the bill could die in committee. If that happens, we have to reset, reload, and try again. Make your plans – we could be heading back to Washington. But if that is what it takes, we’ve got to be willing to get back in there and fight for it.

Don’t mess with a good thing

January 30, 2009

I was in my local cardiologist’s office, having problems. I was having dizzy spells and nausea, and each time I had those symptoms, I also had a heart flutter. This day was not shaping up to be one of the best.

Important Safety Tip: If you have a Congenital Heart Defect, you need the services of a very good cardiologist. Since my Adult Congenital Heart Defect Cardiologist is in Atlanta, I also have a local cardiologist that I see. He’s not an Adult Congenital specialist – I know, I’m breaking my own rule – but he’s a smart guy. If he’s faced with a situation he can’t resolve, he’ll call my Doc in Atlanta rather than insisting that he can figure it out himself.

The day had started pretty good. I was up early because it was a day that I was scheduled to work at the museum, and during breakfast my face got hot and I got dizzy. At the same moment I felt as if I was going to throw up, and I felt my heart skip a few beats. That’s unusual, especially considering that I have a pacemaker. But it passed in just a second, so I just mentally marked it as “One of those things”.

But then it happened again while I was getting a shower. Ok, once is a glitch, twice… twice is a problem. So now I was sitting in my local cardiologist’s office.

After an examination and X-Rays, the doctor’s next step was to interrogate the pacemaker. The word interrogate brings to mind memories of the TV show Homicide: Life of the Street. But that is almost the way it works: An electronic device communicates with the pacemaker and asks “Hey, what’s going on in there?”

Thankfully the cure was a simple one. A week earlier in I had stopped by the Pacemaker Clinic in Atlanta for my  yearly check. Your pacemaker clinic will check the pacer via telephone every few months, but at least once a year they want to see you in the home office. Not only do they get a better reading with you being monitored in person and not over a telephone line, but the best diagnostic tool ever invented is still the eyeball.

“I think we can turn your pacemaker down a little bit,” the pacemaker tech in Atlanta had told me. I was all in favor of that: Pacemaker batteries normally last 10 years or more, but because of my unusual heart, mine had worn out in less than three. So if they could do anything that would save the battery, I was all for it.

It turned out that my heart needed to be fully paced… tech-speak meaning my pacemaker needs to be running at full power all of the time. Turning the power down had set me up for the missed beats, the nausea, and the dizziness. Bummer!

But having a good local cardiologist kept me from making an emergency trip to Atlanta, so having a good local doctor is something you may want to think about.