Becoming a Heart Warrior, Part III

The most important step to becoming a Heart Warrior is probably the most difficult: You will have to be able to discuss your heart defect intelligently.

This doesn’t mean that you’ll need to go to medical school and get an MD after your name. (Unless you want to – I know two CHDers who are physicians!) There are different ways to discuss something intelligently. You will need to know some medical terminology to discuss your CHD with a doctor, but you’ll use a different mindset when you discuss your heart with a potential boyfriend/girlfriend. And if a child asks you a question about your heart, you’ll answer their question in an entirely different way.

The first thing you should do is learn the anatomy of a normal heart. It doesn’t have to be a detailed knowledge, but you need to know the four chambers, the four valves,  and the major blood vessels. The heart has four chambers: two on the top and two on the bottom, and a wall (called the septum) right down the middle that divides them into left and right. The top chambers are the Left and Right Atrium, and the bottom chambers are the Left and Right Ventricle. The right side of the heart captures blood returning from the body and pumps it to the lungs. The left side of the heart takes blood coming from the lungs and pumps it back out to the body. So when people tell you that the heart is a pump, they’re wrong. It’s really two pumps in one case.

You need to understand the Cardiopulmonary cycle. Cardiopulmonary is a big word, but it’s really two smaller words: Cardio, from the word Cardiac, means anything having to do with the heart. Pulmonary means anything having to do with the lungs. And the Cardiopulmonary cycle is the path the blood follows as it moves through the heart and lungs.

A normal Cardiopulmonary cycle looks like this:

Vena Cava→Right Atrium→ Tricuspid Valve→ Right Ventricle→ Pulmonary Valve→Pulmonary Arteries→Lungs→Pulmonary Veins→Left Atrium→Mitral Valve→Left Ventricle→Aortic Valve→Aorta

Note that the first step is simply labeled “Vena Cava”, because there are two Vena Cavas: the Superior Vena Cava and the Inferior Vena Cava. The Superior Vena Cava brings blood from the upper half of the body and the Inferior Vena Cava brings blood from the lower half of the body. Both vessels send blood into the Right Atrium.

The Pulmonary Arteries and Veins seem to be backwards: The Pulmonary Arteries carry deoxygenated blood, while the Pulmonary Veins carry oxygenated blood. It doesn’t make any sense until you remember another definition of arteries and veins: arteries carry blood away from the heart, while the veins carry blood towards the heart. Since the Pulmonary Arteries carry blood from the heart to the lungs, and the Pulmonary veins carry blood from the lungs to the heart, this conundrum is solved!

Once you understand how a heart is supposed to work, you need to know how your heart works. Ask your parents, and ask your Cardiologist.

Your parents are going to be a great source of information, but remember something important: They were riding a wave of emotion when you were born, when you were diagnosed, and any time you went through an operation. Their memories are going to be clouded by that emotion. So ask your Cardiologist too, and use your critical thinking skills to combine the information you get from both sources.

Your doctor can also draw diagrams to help you understand, and you can test your knowledge of the medical terminology by talking with him or her. And if the doctor throws something at you that you don’t understand, you can always ask them to explain it in plain English!

If you have a Cyanotic heart defect, you should learn why it is called Cyanosis (From the word Cyan, which means blue) and what causes you to be Cyanotic.

You should learn what might happen to you down the road – any future operations that you may have to prepare for, and new medical advances. So read the medical literature. This is easier now than when I was trying to learn about my heart. Medical Journals are expensive, but a lot of information is available on the internet. Just enter your diagnosis into a search engine and click the enter button. Back in the old days I had to have a medical dictionary to figure out what some of the words meant, now you can just Google whatever you don’t understand. Be prepared to do a lot of Googling, especially at first! But don’t let that discourage you.

You will have to learn how to read carefully to see what an article is really saying. As I have mentioned before, if you do an internet search for Congestive Heart Failure, you’ll see that the  average time of survival after diagnosis is five years. That can be depressing… until you read further and learn that the study group included some very sick patients. So the “five years” isn’t true, a lot of it depends on how motivated the patient is. There’s really no way to teach this skill, you just have to read and learn.

And be prepared to find out some information that you may not want to know. You doctor may tell you that they have done all the surgical procedures that are possible, and from here on your life is going to be based on how well you take care of yourself. You may find a study that says CHDers don’t live as long as heart healthy people. That’s true – and almost every CHDer who has thought about it realizes that we might not be around as long as everyone else.

But remember that those medical journals can not account for the medical advances of the future. Seventy years ago, a kid with a heart defect lived a sad, miserable life and the vast majority of us died before our first birthday. And twenty five years ago, children born with Hypoplastic Left Heart Syndrome (HLHS) didn’t live a week. All that has changed! And Medicine makes new advances every day!

But it is not about length of life, but quality of life – and as long as you live your life to the fullest, figure out how to do what you want to do despite your health limitations – never give up and never give in! – then you will have become a true Heart Warrior!

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5 Responses to “Becoming a Heart Warrior, Part III”

  1. Joye Says:

    Steve,

    I love this “series”! I plan to save them… store them away for Ethan when he’s old enough to understand. You should really write a book, or something 🙂

    • Steve Says:

      I keep trying to squeeze a book (or maybe just a brochure!) out of my brain, down my arm, and into the keyboard, with little success. 😦 But I am working on something *just a little bit different* for the Funky Heart, and hopefully it will be ready soon!

  2. Wendy Says:

    Well written (as usual) Steve! And so true. And it applies to parents too of CHD kids…..at first we were so overwhelmed, I knew NOTHING about a heart and our appointments with the cardiac team always ended with them drawing us pictures and us repeatedly asking the same questions. And they would “dumb down” the information. I suppose it’s part of the journey, processing it all and figuring it out. Now that we are very comfortable with the heart and Chris’ CHD’s our appointments are much better…….we ask intelligent questions and the cardiac team doesn’t dumb down the answers, they use the proper terminologies and are willing to discuss prognosis/surgery/case studies etc at length with us. Makes a big difference. And like you said, we feel it’s important for Chris to be able to speak intelligently about his CHD’s when he’s old enough (he’s 2.5 and is already pretty darn comfy with all the tests and can tell you a few things about his heart so we’re on our way).
    Wendy

  3. carolyn compton Says:

    I remember asking Clarry’s cardiologist…”so he has an ASD and a VSD?” (he has tricuspid atresia) and then he just said “of course!” like it was the most basic thing to understand! That’s when I realised I had asked him that already so many times, but also that Clarry’s heart wouldn’t work if he didn’t have this arrangement….and that I really need to study this until I understood it. I am learning from you all the time and just the other day, learning about what a “cusp” is, and how many there are on a valve, explains so much. These little details just help me build and build.

  4. carolyn compton Says:

    HAPPY NEW YEAR

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