Posts Tagged ‘Medical Care’

Adult CHDer in the News!

August 21, 2008

There is a great article about my friend Jim Wong on the Forbes.com website today. Jim also has a Congenital Heart Defect, is a member of the Adult Congenital Heart Association, (ACHA) and he and I moderate the ACHA message boards together. (He’s been moderating for a while, I’m just a rookie!)

Like a lot of Adults with CHD, Jim thought that the operation he had as a child “cured” him. But he later found out that wasn’t so. Luckily Jim came through another operation with flying colors, and now he’s getting the high level of health care that an Adult CHD’er needs.

One of the goals of the ACHA is to “Find the Lost“. No, not those who drive in circles and refuse to ask directions, but the Adults with a CHD who are no longer getting good Cardiological care. How could such a thing happen? There are several ways. The Cardiac Kid grows up, moves out, life gets busy, and one of the first things that gets put off is that trip to the doctor. Perhaps, like Jim, he assumed that he was cured. Or like a lot of young people, maybe they assume that nothing bad could happen to them. For whatever reason, medical care becomes a low priority item.

An Adult CHDer needs more (and better) medical care, not less. When something begins to go wrong, your heart will send subtle signals: a chamber will begin to enlarge, a leaky valve will cause a distinctive “whoosh” sound that can be detected with a stethoscope, or there could be a slight rhythm change detectable by electrocardiogram. Often by the time these changes can be felt, valuable time has been lost. CHDer’s are also open to Endocarditis, which could lead to surgery to replace a damaged valve. If you don’t see the need to be concerned, just ask your family. Don’t be surprised if they throw you in the car and drive you to the nearest Adult Congenital Heart Defect Center.

So if you are one of the “Lost”, you’re wanted back home. A lot of us are looking for you.

UPDATE: Lifetime TV recently announced that the How to Look Good Naked episode featuring Heather will be aired on September 9, 2008! Check your local listings and be sure to watch!

OUCH!

August 3, 2008

In the words of Weird Al Yankovic:

Livin’ with a hernia, all the time, such aggravation;

Livin’ with a hernia, gonna be my ruination!

Right now I am not living the good life. I’ve had this hernia for years, but it only bothered me once a month, if that often. And it didn’t hurt very much. My doctor uses a 0 to 10 pain scale, with 0 being “I’m not hurting at all!” and 10 being “I’m dying here, Doc!” In the good old days when this thing flared up, it rarely got to a 4 on the pain scale. Now we’re up to 7+.

I discussed this with my Cardiologist when I first felt the symptoms. “Let’s delay any surgical repair,” was the advice I received, “If you think you can live with it.” Surgery usually isn’t the best option for me because of my low blood oxygenation level. The average heart healthy person on the street is going to have an oxygenation rate of 95% or better. Because of my defective heart, mine is about 80%. An Anesthesiologist is not going to view me as a walk in the park. I want to talk to him before any operation, to make sure he knows I’m not so easy to deal with. The problem is, you meet some Anesthesiologists in the operating room, when he walks in and says “Hi, I’m Dr. Jones, I’ll be in charge of putting you to sleep. Now breathe into this mask…” That’s not going to fly with me.

When you have a CHD, you need to be prepared to take an active role in your health care. This goes beyond following the doctor’s advice when he says to watch your weight. You’ve got to keep your head in the game, and when you don’t understand, you have to ask questions. What exactly is the problem with my heart? What was done during my surgical procedures? How did it change how my heart works? What should I look for in the future that may be a sign of a problem. And on and on.

Most doctors are going to be very happy to sit down with you and answer your questions. Occasionally you will find one with an “What’s with all the questions? I’m your doctor, just trust me!” attitude. If you find yourself sitting in his examining room, my advice to you is to leave. Gather what is yours and go. It’s not that you don’t trust your doctor, but you are placing your health and your life in his/her hands. Blindly following the doctors instructions without knowing anything else is not smart, especially if you have a serious health problem.

I blame Dr. Alfred Blalock for getting me into this mess. Yes, he died two years before I was born, but this, in a way, is his fault. I saw a copy of The Papers of Dr. Alfred Blalock online for a very low price, so I figured I would buy it and then resell it on eBay, with the proceeds going to the ACHA. I placed my order, time passed, and soon there was this box on my front porch. It didn’t look that heavy…. but I found out that The Papers of Dr. Alfred Blalock is two hardcover 1000 page very heavy volumes!