Posts Tagged ‘knowledge’

Ten Feet Tall… and Bulletproof!

November 15, 2010

“People always told me be careful of what you do…” – Billie Jean (1982) Michael Jackson

Here’s a post by blogger Doctor D about growing up as a Sick Kid. Here he is writing about children living with Diabetes, so what are parents of  Cardiac Kids who just hit the teenage years supposed to do? Give them room? Lock them in their rooms? Who knows? I can promise you one thing, life will not be “normal”… after all, what is “normal” to a teenager going through puberty?

Oh, goodness what a time. The hormones are fully in control and you just don’t want to hear a word your parents say. Whatever they want, you try to do the opposite, and you feel just like the title of this post: Ten Feet Tall and Bulletproof. Throw a Heart Defect into the equation and things could get crazy.  Sick Kid? Naw, that ain’t me! I’m just like my friends, I can go where I wanna go and do what I wanna do, and never feel “sick” at all! Medication? Who needs medication? If I miss a dose that’s OK, because I don’t feel any different.

There’s a problem brewing right there. A lot of times, you don’t feel any different when your heart is causing trouble. A worsening heart can steal your energy and your stamina, but not all at once. It does it so slowly that it is hardly noticeable… and then suddenly, you realize that you can’t do what you used to do and your energy level is way down. Here’s a newsflash for our teenage CHDers: You were born with this problem and you will have it every day you live. So you’ve got to pay attention to your health… every day you live. You are right, it isn’t fair. But rather than whine and cry about it and let your Heart Defect win, why not learn how to fight it?

The teenage years are just the time when they don’t want to follow your advice, so you got to get ’em when they are kids, not teens. When they are teens, you are THE PARENT and your opinion carries very little weight. When you and your teen have a conflict concerning their illness, it might pay to follow Doctor D’s advice and have a neutral party step in. So you gotta catch ’em when they are young.

And this leads to an incredible balancing act: exactly how much do you tell a CHD child about their heart? First things first, you don’t want to scare them, but you do want to help them know that taking care of themselves is so very important. Cardiology appointments and checkups and doing all the “little things” right will help them live longer and better. But you don’t want to drop that knowledge on them all at once, or when they are too young, because they will almost certainly start looking at the other side of the coin. It’s an uncanny ability that kids seem to have. And you certainly don’t want to hang the “I’m different!” thoughts on the child – we want him or her to fit in, to be a well-balanced kid who grows into a great member of society. If you approach every new situation with an “I can’t” attitude you’re going to miss out on some wonderful life events. And we don’t want that to happen, either.

It’s almost like a valve: you have to decide how much information they can handle and open up the information faucet just enough. Not too much, and not too little. In a few years when they are older and understand more, you can open the faucet just a little bit more. And hopefully, by the time they reach the rebellious years, they understand enough to know that their health is not the place to issue a challenge to parental authority. They can make you scream, run in circles, and even pull your hair out, but those medications are not to be missed and you see your doctor when you need to. Because you have taught them how important it is.

I do not envy Heart Parents with children on the brink of puberty. Those folks deserve a medal!


From Death, Life

October 5, 2010

Greater love hath no man than this, that a man lay down his life for his friends. – The Gospel of John; Chapter 15, Verse 13

I hate that he’s gone, and I hate everything about the CHD that took this perfect child from us. Nothing can replace him, and nothing will help us “get over” this. It is too much. – Comment left last night by Ewan’s mom.

Lord, yes. Nothing can replace him, and nothing should. This was a life cut much too short. It’s been a rough week in the Congenital Heart Defect (CHD) family, as at least six CHDers of all ages have passed. Always the optimist, my hope is that someone, somewhere learned something new from one these cases. And perhaps they can couple that new knowledge with what they already know and find the key that unlocks the mystery.

Older CHDers can help, too. Something has kept us going much longer than anyone predicted…what? When I shuffle off this mortal coil I plan to leave my heart to medical research. Let them poke and prod as much as they want, I won’t mind. And perhaps someone can figure out why some of us are only granted an hour upon the stage and then are heard from no more, while others seem to be here tomorrow, and tomorrow, and tomorrow.

There is a reason why that happens… what is it? We haven’t found it yet. But I live in the hope that if something – anything – is gleaned from such a sad event it will be knowledge. Even if all that is learned is what not to do, that helps bring us one step closer.

Becoming a Heart Warrior, Part III

December 31, 2009

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!