Words of Wisdom

Question: What’s black and white and read all over?

Answer: Paul Cardall’s new book! 

Paul Cardall, the award winning musician and Heart Warrior who received a heart transplant in September of 2009 has added “Published Author” to his list of accomplishments! His new book Before my Heart Stops: A Memoir is now available for Pre-Order! Clicking the photo will take you to the order form!

Paul is an inspiration – not only a great musician, but a good writer (Check out his blog, Living for Eden). I had the chance to interview him late last year (Click the “Heart Warrior” link to read the interview) and I learned that Paul is both a Gentleman and a gentle man. Even though I have not read his book – Hey, I had to Pre-Order it just like everyone else – I highly recommend it.

Paul has an amazing story to tell. Pull up a chair, have a seat,  and get ready to hear it.

GAMECHANGER

You won’t see many Saturday editions of Adventures of a Funky Heart! But then again, I don’t find important news like this every day:

…as the American Board of Internal Medicine voted unanimously for the Adult Congenital Heart Disease (ACHD) sub-specialty to be approved for board certification – the American Board of Pediatrics had previously signed-off on the new sub-specialty.

(Emphasis mine)

As I have mentioned before, seeing an Adult Congenital Cardiologist is critical to the care of a person with a Congenital Heart Defect. Adult Cardiologists, for the most part, aren’t very familiar with congenital defects. They are trained to deal with the problems that develop in a healthy heart as a person ages – clogged arteries, Cholesterol problems, and heart attacks. Adult CHDers won’t have those problems – or they will manifest themselves differently than would happen in a “normal” heart. So we need to be seen by an Adult Congenital Cardiologist.

But there are no Adult Congenital Cardiologists – not really. We do have a small group of people who have the experience needed to care for Heart Warriors, but there is nothing on paper. My doctor, for example, is Co-Director of the Adult Congenital Cardiology program at a major hospital…. but his license says he’s a Pediatric Cardiologist. And at one time he was; he just kept following his patients for as long as they needed him, and he’s “grown up” with the rest of us.

Since there are no “official” Adult Congenital Cardiologists, what does the approval for board certification mean? Simply put, there will be licenced, certified, diploma carrying doctors who can care for us in the future. Because now, it is going to be official.

There is going to be training for Adult Congenital Cardiology. (There already is at Mayo Clinic.)

There will be an oversight group.

And there’s going to be a test – a test you have to pass before you can legally claim to be an Adult Congenital Cardiologist. (I am not sure about what the plan is for the people already working in the field, such as my doctor. Usually there will be a way for them to be “grandfathered” in – have a certain amount of experience and pass the test, and you are board certified.)

Things won’t change overnight – Adult Congenital Cardiologists will still be few and far between, at least at first. If we’re getting good care now, it probably won’t pay for us to drop everything and go running off looking for a new doctor. But for the Cardiac Kids who are growing up, there will be more and more doctors able to take care of you after you become an adult. And hopefully along with the new certification program, doctors will work on a transition program. So Pediatric Cardiologists can help their older patients move on to adult oriented care. Because I’ve visited Pediatric Cardiologists before, even when I was in my 30’s. I’ve tried to get my adult body into those tiny chairs – the ones so low that your knees are level with your eyeballs.

It’s a great day – everybody wins. But the people who will benefit the most are the Cardiac Kids who aren’t quite here yet.

No greater love

UPDATE: Zeb’s surgery got pushed back – the new date is March 2, 2010.

Here’s a bittersweet report that I read earlier today: The newest generation of Cardiac CT scanners reduce radiation exposure by up to 91%.

My friend Jim could have used one of those new scanners. Jim was 54 years old; he was from an older generation of survivors. Back in those days when CHD kids were few and far between and hardly anything was known about heart defects, doctors would X-ray and scan a CHD heart from every possible angle.

But no one realized the amount of radiation those children were absorbing. So fast forward to today, and our first and second generation of Heart Warriors are passing on. A fair percentage of them are dying not of their heart problems, but rather of various cancers.

There’s no real medical evidence (yet) to back this theory up, just stories from friends and relatives and survivors about all the testing they went through, coupled with the knowledge that an unusual number of us seem to pass on because of cancer.

Greater love hath no man than this, that a man lay down his life for his friends, reads the scriptures. Jim was a true Heart Warrior, in every sense of the word – he stood up for all of us when there was hardly anyone around to stand up.

Even when he was a little kid.

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!

Becoming a Heart Warrior, Part II

When I was a child, I spake as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things. – 1st Corinthians 13:11

When you were a child, your parents took care of you. This probably included organizing your medications, making sure that you took them at the proper times, and picking up refills from the drugstore. But now that you are older, that responsibility should shift to you – and if you have any desire to be independent, you should welcome it!

But there is a flip side to the coin: These medications are confusing, difficult to obtain, and extremely important. They keep you going, and thought of taking control of your medication needs can be daunting. But don’t worry – its a little bit easier than it looks, if you have a system.

One thing you might find useful is this document: Drug Chart (.PDF file) Click the link, and a .PDF file will appear that you can use to organize your medications depending on the time of day that you need to take them.

Before you fill this chart out, make several blank copies or save it to your computer. Your doctor will change your medication, and you’ll need a fresh chart to write the new schedule on. At the top, near where it says “Medication List for” write your name – and write the date, too. If you go several months without having a medication change (lucky you!) you should still update the chart occasionally and change the date, so that everyone can tell that you keep your chart current.

Sit down and organize your meds, grouping them by when you take them. If this is your first time or the instructions on the bottles are confusing, get your parents to help. We’re not going to jump into this with no guidance at all; after all, you are learning how to take control of your health. It’s a process, and it is perfectly fine to get help until you feel comfortable.

Once you have the meds organized, have someone familiar with your routine double-check your efforts, and then fill the chart out. Now, I can take all of your pill bottles and mix them up, but as long as you have that chart, you should be able to quickly figure what you are supposed to take – and when!

A lot of CHDers organize a weeks worth of pills at a time, usually on the weekend. If this is the way your family does it, take over – but not all at once. One weekend a month, you take charge of organizing your pills for the week. As you gain confidence, work up to organizing all of your medications yourself.

Next, you need to learn how to take over getting your refills. You’ll need an index card (You can even cut it in half) and a calender. Not the family calender hanging next to the telephone, but a blank calender with enough space to write in the date blocks.

The easy part is examine every drug bottle and note how many refills that prescription has left. Write it down on your index card and keep the card in a safe place. This is easy, you’ll have a list that reads like this:

Nausea-B-Gone  8

NiceBeat  4

Blood Pressure 5

Every time you get a refill, take your list and reduce that prescription’s number by one. When you hit 0, you need a new prescription. Depending on the medication, you may be able to call the doctor’s office and ask for a new prescription. Or he/she may want you to come in for an appointment first. So as soon as you write 0, call the doctor’s office! That gives you plenty of time to see the doctor if that is what he/she wants.

Now you need your calender. Take your pill bottle and determine how many days worth of medication you have. If you have 90 pills and you take it twice a day, you have 45 days worth of medication. Count forward 45 days from today… now back up ten days. That’s the day you want to start thinking about getting your next refill of that medication from the drugstore – it gives you a ten-day “window” in case there is a problem getting the next refill.

Most drugstores don’t have an automatic refill policy, you will have to tell them that you need a refill. That can usually be done over the phone, by calling the pharmacy refill line and following the recorded directions. You usually type the prescription number (it’s on the bottle, following the letters RX) into the phone’s keypad and never speak to a person. Simple and easy!

I’ve made this explanation as simple as possible, almost to the point that readers might roll their eyes and wonder if I believe they know anything. I’m not writing for you today – I’m writing for those who realize that they will eventually have to take control of their own healthcare and may never have done any of this before. It is a lot of responsibility – don’t be afraid to ask for help and guidance as you learn. Because one day, this job will be yours, no matter if you are ready or not.

And – which is more – you’ll be a Man, my son! – If, Rudyard Kipling (1910)

Becoming a Heart Warrior, Part I

Most Funky Heart! readers are Heart Moms and Heart Dads, and a lot of them wonder about what they are going to do about their child’s Cardiac Care as they grow older.  Most Cardiologists can’t handle CHDers – theyare trained to deal with acquired heart problems, things that are brought on by normal aging or (heaven forbid!) too many cheeseburgers. If you have a heart defect, you will need a doctor trained to deal with heart defects – and you will need to see that doctor all of your life.

But even though some of the CHDers my age and older had to, you probably won’t be stuck with a “kids doctor” all of your life. There is a growing cadre of doctors known as Adult Congenital Heart Defect Cardiologists who are trained to treat Congenital Heart Defects – but from an adult viewpoint.

Unusually, these doctors aren’t recognized as a specialty – not yet. What happened is that a lot of these doctors are really Pediatric Cardiologists, who have followed their patients over the years and “grown up” with them. As their older patients came back to them and started asking adult questions (“Doc, you have any tips on getting insurance with a heart problem?” or “Hey Doc, Beth and I want to get married… what about having kids?”) these docs didn’t pass the buck. They dug around, found the data, and worked out the best answer for their patient.

But times are changing, and now there is building momentum – led by the American College of Cardiology (ACC) and the  Adult Congenital Heart Association (ACHA) – to make Adult Congenital Cardiology a recognized specialty, with guidelines and proficiency tests.  New doctors would have to be board certified to be an Adult Congenital Cardiologist. Doctors already in the field would be “grandfathered” in, providing they can pass a proficiency exam.

And as for how adults with CHDs would be cared for, there are already guidelines. The first set of guidelines is known as the Bethesda 32 Report. Bethesda 32 splits all of the known heart defects into three groups – mild, complex, and severe. All CHDers need to be seen at a Regional Adult Congenital Heart Defect Clinic at least once; and perhaps more often depending on their defect. The first visit (which all CHD adults should get) is to establish a baseline – determine what is that individual’s “normal”. After that, someone with a mild heart defect can be cared for by a general cardiologist and only needs to be seen at the Regional Clinic if a problem arises. But someone with a severe heart defect (Tricuspid Atresia, which I have, is considered severe) needs to have regular exams at the Regional Clinic.

A second set of guidelines were recently released. Titled The ACC/AHA 2008 Guidelines for the Management of Adults with Congenital Heart Disease, these guidelines were created by the American College of Cardiology and the American Heart Association, and most likely you will never need to read them. (If you want to see them, click HERE; and if you want to download them as a .pdf file, click THIS LINK. )

The ACC/AHA guidelines are an instruction manual: The best ways to combat a problem, based on the best available evidence. As such, the Doctors who work at the Regional Adult Congenital Heart Defect Clinic probably have several copies of this document available, but it will be in the group reference library, not in the waiting room. (And it’s best to leave the waiting room magazines alone and bring your own; germs can’t read but they can use a book to move around.) So even though you may never see a copy of these guidelines, they exist and are an important part of Congenital Cardiac Care. The ACC/AHA guidelines do not replace Bethesda 32; rather the two reports compliment each other.

So even though it may seem that you have very few options as you age, Congenital Cardiac Care for adults is improving.

We Missed It!

Golly darn gee whiz! We missed it!

The Funky Heart missed out on all the festivities associated with World Heart Day, which was September 27, 2009! What was I doing on September 27th? Ha’ mercy, I can’t remember… were we supposed to exchange gifts?

What’s that? Sorry folks, I hate to get you all excited, but CHDers aren’t really invited to World Heart Day. It’s for those other guys – Acquired Heart Disease and Stroke. Bummer!

But that’s OK. You can have World Heart Day. We’ll stake a claim to November 29th, the anniversary of the first Blalock-Taussig shunt (which predated your bypass operations, by the way) and we’ll celebrate then.

So when you talk about rebuilding your life after heart surgery, we’ll show you child after child who have been fighting Heart Defects from the moment they were born. We’ll introduce you to their parents, who are willing to ask one more question, go one more mile, and explore one more option in an effort to give  their child the best chance to live.

We shall “strip our sleeve and show our scars” – a lot of us have more than one. And we’ll see to it that you meet some of our adults, people who may have fragile bodies but also have an iron will, who never give up and never give in.

We’re only a few, a band of brothers and sisters who fight a common enemy. And we count anyone who fights Heart Defects – Patient, Parent, Doctor, Nurse, Surgeon, Friend – as one of us.

We remember, with advantages, the battles that we  have fought and the warriors who have fallen. Because our story is a story of perseverance, of hope, of determination, and courage.

And that is a story that a good man will teach his son.

Your Contributions Needed!

It’s time for another CHD Blog Carnival! For those of you who may not know what a blog carnival is, it is like a magazine: different articles are provided by various writers, but all of them focus on the same idea or subject. The name come from the very first collection of like minded blogger links: it was hosted by a blog named “Carnival of the Vanities.”

If you are a CHD blogger, all you need to do is write a post on the chosen subject, and forward the link to me. I’ll put all the links together and present them as our work, and every writer will get credit and his/her blog mentioned. If you need an example of a blog carnival, click HERE for the carnival based on the patient’s experiences,  Patients for a Moment; click HERE for Grand Rounds, which is the best known medical blog carnival; or click HERE for the Nurse’s edition, Change of Shift.

Please note there has been a subject change: The subject of this edition of the CHD Blog Carnival is “How a heart defect affects my life”, so please make your contribution on that subject. When you are ready to submit, send the following information to me:

Your name

Your blog name

The URL of the post you are submitting

The title of the post you are submitting

Type CHD Carnival Submission in the heading line and that’s it!

Send it to Wildca   t3@gm   ail.com (spaced strangely to make the spammers scream; remove all spaces for the correct address)

The deadline is November 25, 2009, and the carnival will be published on November 30.

BATTLE WOUNDS (NSFW)

October 25, 2009: Saint Crispin’s Day

“Then will he strip his sleeve and show his scars,

And say`These wounds I had on Crispin’s Day.’ “

– Henry V, William Shakespeare

Coming Sunday

Fair Warning: On Sunday, October 25, 2009, I am going to run a photograph of my bare chest. It will be NSFW – Not Safe for Work. I am hopeful that despite that, Funky Heart readers will still drop by.

I seriously doubt that female readers will be calling anytime soon; I am not a body builder. I’ve got some flab out front! (What? You expected muscles  so tight they could stop bullets? Not hardly!)

Like most survivors, I have a chest full of scars – and they make me who I am.You may hear someone say “My life changed when…”, but I don’t know any different.

Yet this journey has taken to places I never thought I would go; I have met some of the world’s best doctors – usually as a patient, I hate to say – and other survivors just like me. And best of all, I get to “speak” to you through this blog. I don’t see Tricuspid Atresia as a curse, though at times it can be a pain in the… ankle!

There will be a post every day this week, Saturday included, and then the photo on Sunday. I picked October 25 because it is St. Crispin’s Day. Why St. Crispin’s? Read  Shakespeare – specifically, Henry V. You’ll understand.