Archive for the ‘Cardiac Kid’ Category

24 hours at Johns Hopkins

November 28, 2010

“Because your whole world can change in 24 hours.” – The Paper (1994)

Tuesday, November 28, 1944: Sometime during the evening of the 28th, Dr. Alfred Blalock places a telephone call to the Surgical Laboratory at Johns Hopkins Hospital. His Surgical Assistant, Vivien Thomas, has recently developed a surgical correction for the heart defect known as Tetralogy of Fallot, also known as Blue Baby Syndrome. The two men have planned for Thomas to teach Blalock the steps needed to successfully complete the surgery during an operation on a dog. Blalock has done the operation only once and many more teaching sessions are needed.

Blalock is calling with grim news: Earlier he had asked Thomas about the possibility of operating on 19 month old infant Eileen Saxon. Weighing only nine pounds and often cyanotic, the dusky blue color that gives this malady its name, she is deteriorating rapidly. At the moment she is so cyanotic that she is purple and is struggling for every breath. Dr. Blalock tells Thomas to meet with Elizabeth Sherwood, the operating room supervisor, first thing in the morning. Thomas has invented several surgical tools specifically for this operation and he is to make sure that they are available.

Thomas is stunned and reminds Blalock that he doesn’t know the operation very well. “But if you don’t get ahead of yourself, break it down into smaller and smaller steps as you work, it can be done.” It is one of the familiar sayings Thomas uses when he is teaching proper surgical procedure and for a moment, Blalock feels as if he is the assistant.

After Blalock hangs up, Dr. Helen Taussig orders him home. Blalock protests, but she reminds him that he plans to operate in the morning – an operation that could very well be emergency surgery. The hospital has his telephone number should he be needed during the night. At roughly the same time, Thomas and Blalock leave for their respective homes. Segregation is still prevalent at the time and Thomas leaves by a back entrance; neither man knows the other one has left.

Dr. Taussig spends the night on the ward; Eileen’s parents are also there. Although they don’t know it, this is an ominous sign: in the 1940’s, visiting hours rules were strictly enforced unless a patient was seriously ill.

Wednesday, November 29, 1944: Too nervous to drive, Blalock asks his wife Mary to take him to the hospital. She lets him out of the car in front of the towering Johns Hopkins dome. Dr. Blalock enters the building, walks through the rotunda (rubbing the toe of the Statue of Christ for luck, an old Hopkins tradition) and turns left. From here he exits the building through a side door, walks approximately 50 yards, and into the Harriet Lane Home for Invalid Children. Vivien Thomas enters the Hopkins complex from a side entrance and goes immediately to Elizabeth Sherwood’s office. Miss Sherwood knows nothing about Dr. Blalock’s plan to operate but immediately shows Thomas the selection of items that will be available to Dr. Blalock. Thomas adds custom-made clamps and needles to the collection. These needles are no more than 1/2 inch long. Thomas insists that the clamps and needles not become part of the general operating room supplies – they have been custom made for this operation only.

Blalock and Taussig examine the child and confer. Eileen has not improved during the night, and Taussig concedes that there is nothing else that she can do. She leaves the meeting as Thomas arrives, perhaps to return to Eileen’s bedside or for a quick trip to the Cafeteria. Blalock and Thomas discuss the upcoming operation. They go over some of the more critical steps, and also discuss “routine” points such as where the incision should be made. Thomas informs him that Miss Sherwood has promised that the large operative theatre will be available but needs to know when the operation will begin. Blalock decides that the operation will take place after the morning rounds, unless events dictate otherwise. He leaves to confer with Eileen’s parents and to conduct Rounds. Thomas did not normally participate in Rounds so he would have gone to the Surgical Lab, although he may have gone to his office. He calls Miss Sherwood and informs her of Blalock’s decision.

The operative team convenes in the Scrub Room annex connected to Room 706. Although first chosen at random, the majority of Hopkins’ early heart surgeries will take place here and the room will come to be known as “The Heart Room.” Dr. William Longmire and Dr. Denton Cooley will assist. An unknown person sets up a movie camera pointed at the operating room table; this film still exists in the Johns Hopkins Hospital Archives.

Blalock continues to discuss the upcoming operation with Thomas as he prepares for surgery. Thomas is not scrubbed in and has no intention to – he is not allowed on the Operating Room floor. He will be seated in the raised seats of the theatre, however. Helen Taussig will be in the Operating Room, even though she is not a surgeon. She’ll spend most of her time at the head of the table, monitoring the patient.

A few minutes before Eileen arrives, Blalock quietly asks his scrub nurse to find Thomas and help him get scrubbed in. As expected, Thomas is seated in the bleachers above the OR. Blalock also orders a milk crate and has it placed behind him. Thomas stands on the crate, peering over Blalock’s shoulder at the operative field.

The operation begins with a curving incision near the 4th rib on the child’s left side. With Thomas guiding him, Blalock gently works past the lung and cuts a path to the heart. The heart is small, dark, and obviously struggling. William Longmire later said “I remember watching him open the patient and just thinking it was impossible.”

Blalock works patiently, finding the Left Subclavian Artery and the left branch of the Pulmonary Artery. He places a clamp on the Subclavian to cut off blood flow – using one of the clamps designed by Vivien Thomas for this procedure – and cuts it. He then places two similar clamps on the left branch of the Pulmonary Artery. Making a small opening in the Pulmonary Artery, Blalock uses the tiny needles Thomas has prepared to sew the Subclavian Artery into the Pulmonary Artery. After double checking his work, Blalock removes the clamps. He is unable to feel blood flowing through the new connection.

Legend has it that Helen Taussig said “Al, the child’s lips are a lovely pink color!” The Johns Hopkins online exhibit about the operation states that the anesthesiologist said “The boy’s a lovely color now!” at a later date, during the third operation. Blalock’s operative notes comment that the circulation in the nail beds of Eileen’s left hand “appeared to be fairly good.”

The difficult segments are complete but the operation is far from over. Sulfanilamide (an antibiotic) is introduced into the incision and Blalock begins to close. He sews the soft tissue closed with silk sutures and is finally done. The operation has taken about ninety minutes. (CLICK HERE to perform the Blalock-Taussig Procedure yourself. Read Blalock’s operative notes here:  PAGE 1 PAGE 2)

Eileen is moved to the Recovery Room, where Dr. Henry Bahnson is responsible for her care. As one might expect, Blalock and Taussig look in on her often.  Bahnson’s opinion is that the little girl is still very blue but improves over time. Eileen’s mother comments “When I saw Eileen for the first time, it was like a miracle… I was beside myself with happiness.” Very little is known of Thomas’ movements after the operation. He is seen in Recovery and also in his Lab.

As the sun sets on the city of Baltimore, Eileen remains in critical condition but she is stable. The operation is a success, but in a few months it will fail and she will need another Blalock-Taussig Procedure, this time on her right side. She will die just before her 3rd  birthday.  The doctors determine that the surgery is more suited to an older child whose blood vessels have had a chance to grow. In early 1945 Blalock and Taussig co-authored a medical journal article about the first three procedures. Hundreds of patients would flock to Johns Hopkins Hospital to receive the life-saving surgery, even though the odds were long: an article in the February 17, 1947 issue of The American Weekly noted that 14 of the first 70 patients had died.

But parents noted that 56 of them had lived and were growing up, something that had never happened before. The era of Congenital Cardiac Surgery has begun.

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A Cure for Heart Defects!

November 26, 2010

“I believe that this nation should commit itself to achieving the goal, before the decade is out, of landing a man on the moon and returning him safely to Earth.”
– President John F. Kennedy, May 25, 1961

 

On September 29, 2010, Fran Visco of the National Breast Cancer Coalition appeared in a video posted to YouTube. It contains a powerful message.

“We can’t count on hope as a strategy to end breast cancer. I’m giving up hope, because hope is not a solution. Hope will not end breast cancer; we need a plan, a goal… a deadline.”

What a statement… and what a shift in thinking! Think about what she is saying: HOPE CAN NOT CURE OUR DISEASE. Hope is a good and pure thing, a friend we hold close in our most desperate moments. Take note that she did not say “I am giving up on hope,” because she’s not. Hope is what keeps us going when the world crashes down around us. But we need to realize that hope alone can not fix defective hearts.

A popular phrase that you may have heard is “We will cure (chronic illness) in our lifetimes.” The problem is, all generations living with the chronic illness use that phrase as a rallying cry. Time moves on, the older generation passes away, but the phrase is still being used. Eventually, the urgency disappears. There is no real urgency for beating the disease… just an empty promise that it will happen “in our lifetimes.”

In the same vein, “Awareness” is not an endpoint for the Heart Defect community. What good is awareness if it does not bring people to take action? We are winning – the number of deaths caused by Heart Defects is dropping. The American Heart Association estimates that in 2005, 3,500 people died from Congenital Heart Defects. That’s the most current statistics that they have available, so the number may even be lower today. But that’s not acceptable. That’s still 3,500 of our friends, our families, our sons, and our daughters – dying each and every year.  Being “aware” of a Heart Defect isn’t enough, so perhaps it is time to redefine ourselves, and rethink everything we’re about, everything we are fighting for.

It’s time to declare war on Congenital Heart Defects. All out, bare knuckle, unrestricted mortal combat. Like Miss Visco said, there needs to be a plan, a goal, and a deadline.

THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL: To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So how are we going to do it?

I can’t answer that. I am not a doctor or a scientist; I have Bachelor of Science degrees in History and Political Science.  And to add to the challenge, we are going to have to do this all by ourselves. If we’ve proven one thing, it’s the fact that Congenital Heart Disease is an invisible disability and without a unified approach, we have no voice. For several years the Adult Congenital Heart Association (ACHA) traveled to Washington DC to lobby for a federal level registry of Congenital Heart Defects. Only after we united with seven other nationally recognized Heart Defect Support groups and formed the National Congenital Heart Coalition were we able to get legislation introduced in Congress and eventually inserted into the Patient Protection and Affordable Care Act.

So lets put our heads together again. It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?

In 1961, President John Kennedy challenged the nation to put a man on the moon before the end of the decade. Back then, we could barely get a rocket off the ground, much less think about going that far. Along the way we won some major battles and we lost some good people, but in July 1969 the Apollo 11 crew landed safely on the moon and came home.

We have to be willing to put everything we have on the table and draw that last card. It could all blow up in our face…but we could also hit the jackpot!

Let’s rise to the challenge. This is our Apollo program, our impossible dream.

Let’s go to the moon.

Behind Those Doors

November 21, 2010

Karen Thurston Chavez is Co-Founder of the support group Broken Hearts of the Big Bend (BHBB) and a good friend. We met when I spoke at BHBB’s Congenital Heart Defect Symposium last year and we trade e-mails at least once a week, keeping up with each other and discussing the latest issues affecting the Heart Defect community.

Karen’s blog has a most unusual post you need to read – in September, she was able to shadow her son’s heart surgeon for a day at Shands Children’s Hospital in Gainesville, Florida. But then something she didn’t expect happened:

I figured I would sit in on conferences and consultations he had with families whose children were having, would be having, or just had open-heart surgery to repair their congenital heart defects.  I guessed that I would sit and watch while he handled administrative work. I was right. I did all those things.

I did not think I would step into his operating room.

So I’m sending you over to her blog for today’s post. Karen will help you get scrubbed in and then walk you into the Operating Room as Dr. Mark Bleiweis performs open heart surgery.

SHADOWING MY SON’S HEART SURGEON

Celebrate Red and Blue Day

November 19, 2010

“What sort of day was it? A day like all days, filled with those events that alter and illuminate our times…” – You Are There, 1953

November 29, 1944: Dr. Alfred Blalock took one final look into the incision. It looked right… he had been operating for years, surgery shouldn’t make him nervous anymore. But this operation did. He had completed this same surgery on a dog only once, and no one had ever tried it on a human before. Let this work…

“Watch for bleeding,” his assistant reminded him as he started to remove the clamp. Blalock nodded, ready to drop the clamp back into place if the new connection leaked. But not too hard, too much pressure and you crush the Pulmonary Artery; do that and you kill the patient.

His partner, Dr. Helen Taussig, stood near the head of the table. Heart surgery had been her idea, she had just as much riding on this operation as he did. Probably more – she had assured both him and the child’s parents that the theory behind this operation was sound. The little girl’s heart defect caused Cyanosis – she was literally suffocating from lack of oxygen. Taussig’s theory was to reroute a blood vessel to the lung and increase the amount of oxygenated blood available. Blalock’s assistant, Vivien Thomas, had designed the operation and tested it. All three of them had their reputations on the line.

And the irony of it all was if things went bad, he’d probably be the one to suffer least. Blalock was the Chief of Surgery, after all. Taussig was an almost deaf female doctor (who ever heard of such a thing?) and Thomas was a Black man who official job description wasn’t supposed to bring him anywhere near a scalpel, much less doing experimental surgery. If things went wrong, they would be the ones hung out to dry.

So let’s not allow things to go wrong, Blalock thought as he inspected his work again. “I’m removing the clamps,” he finally said.

Reaching into the open wound, he gently touched the new connection. “I can’t feel any flow,” Blalock said, disappointed. After a long pause, Taussig spoke.

“Al, the baby’s lips are a glorious pink color.” Stunned, the surgeon watched as the child’s blue lips slowly turned pink.

Before that day in 1944 heart defects were almost always fatal, usually during the first year of life. Occasionally a child was lucky enough to survive to late childhood or the early teens, but that was only under the best of circumstances. And that “lucky” child had no strength, no energy, and very little Quality of Life. Even after that first surgery (the Blalock-Taussig Shunt)  there was still only one operation, designed to relieve the effects of one heart defect. The odds weren’t good, but CHDers now had a chance. And sometimes one chance is all you need.

CHD Survivors, our families, and our friends celebrate November 29 as Red and Blue Day. Participating in Red and Blue Day is simple – just dress in red and blue clothing. You don’t have to donate any money (though if you choose to, your favorite CHD Support Group would be an excellent choice!) and you don’t have to volunteer to do anything. Simple as can be. If anyone compliments you on your good taste or your color scheme, just be prepared to explain why you chose those colors.

A Heart Defect is an Invisible Disability… many of us don’t even look like we have a health problem. Some of us are Cyanotic, but you have to look really close (and know what you are looking for) to see it. But November 29 is OUR DAY, so wear Red and Blue… and let’s stand out!

A Weighty Matter

November 17, 2010

Some not so wonderful news to report: Children with Congenital Heart Disease (CHD) are more and more overweight.

That’s not good. While Cardiac Kids may be slow to add weight when they are young, most of us “catch up” later. We may be a little bit thin, but our weight is acceptable. But this study contends that once we catch up, we keep going! The reasons are many and varied, and usually just as applicable to Heart-Healthy kids: video games, fast food… you’ve heard all this before, I am sure.

But CHDers need to keep their weight under control. (…says the Funky Heart, who could stand to lose a few more pounds himself.) Every extra pound we carry means that our hearts have to work harder to pump blood through our body. That may not be a problem for the average kid, but our hearts are already bruised and beaten up; they have been cut apart and stitched back together again.  We need to make it as easy on them as possible.

So how much should you weigh? The research article cited above mentions the Body Mass Index (BMI) as one of its comparison tools.  The BMI is OK for use as a comparison, but don’t use it as your source for your proper weight. Ask your Cardiologist for advice about a good weight range to stay in. Many people contend that the formula used to calculate your BMI number is flawed. You have to wonder if they may not be on to something, since according to their BMI numbers, former President George W. Bush is a fatso and actor Tom Cruise (five foot, seven inches tall; 160 pounds) is plump.

So find out what your healthy weight range is, and do what you can to keep it there. Be sure to discuss any exercise plan with your doctor first – overdoing it and damaging your heart while you are trying to take care of yourself defeats the entire purpose, after all. Go outside and play; don’t think about exercising, just go have fun. Take a walk through the neighborhood, at your own pace. Get FitDeck Exercise Playing Cards. FitDeck Junior is great for Cardiac Kids, providing that their Cardiologist gives their approval. It’s all fun and games… but they are really exercising! (Shhhh! Don’t tell ’em the secret!)

I often remind my readers that CHDers are living longer and better lives as modern medicine develops new ways to overcome our Heart Defect. But it doesn’t “just happen”, we have to contribute to our own well-being.

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!

Back to School

November 12, 2010

“Trouble is, there’s not enough of us to go around – we’re spread thin, so sometimes, important things get ignored or don’t get said.” – Judge Tolliver (John Goodman), The Jack Bull (1999)

Yesterday I had the chance to go back to school – I went back to my Alma Mater to our School of Nursing!

I asked for directions just to be sure – when I graduated the School of Nursing didn’t exist. And I didn’t want to assume I could find it only to discover that it was in a back corner of the campus. But it wasn’t a problem; as soon as I turned off of the main highway and scanned the campus, there it was. Everything was exactly as described, which usually doesn’t happen – more often than not, I get twisted up and turned around but everything went perfectly.

After meeting the instructor for the first time, we went upstairs and into a classroom where I met the students (about 30 of them) and talked about myself and my heart defect. If you’re a reader of this blog, you know I usually post the printed text of my presentation. Not the case this time – as I told the students, when I make a presentation to Heart Families, I’ve got a plan and am pretty sure what I will say. With them, I wasn’t sure what they wanted or needed to know, so I’d just talk about myself. If they had a question, feel free to break in.

Someone had a really good question about did I need oxygen. Technically no, I don’t need oxygen, but I sleep with a flow of four liters per hour. It was originally prescribed to keep my Hemoglobin down, and I can skip it for several days without problem. When I take a weekend trip, I don’t take it with me. But I’m like a rechargeable battery and the O2 is like my charger – after about 4 days of sleeping without oxygen, I feel run down.

After I talked about myself and the Question and Answer session, we moved over a larger room set up as a hospital ward. When I walked in there was a bed to my right with a medical mannequin in the bed, tucked under the covers neatly. I saw him/it out of the corner of my eye and for a moment there I thought it was a real person!

We didn’t bother Earl (or whatever the mannequin’s name was), he looked comfortable. I took another bed, and in pairs and threes the students came in and examined me. My heart was listened to more times than I can could count, and everyone took a close look at my blue fingernails. My right hand is a little more blue than usual because of the swelling associated with my wrist, but my left hand is better suited to observe Capillary Refill (press down on the fingernail until it turns white, then release. Observe how long it takes for the blood to flow back.)

More than one student seemed to be very interested in the fact that you can’t read my pulse in my left arm – a side effect of the Blalock-Taussig Shunt, the surgery I had in 1977. In the Blalock-Taussig, the Left Subclavian Artery is cut and sewn into the Pulmonary Artery. The Left Subclavian normally passes near the shoulderblade (the Clavicle), and down the left arm. Because it has been disconnected, you can’t get a pulse in my left arm, can’t take an accurate blood pressure reading, and blood draws and vaccine injections should be done in the right arm.

(NOTE: If you have the Modified Blalock-Taussig Shunt, a small artificial connection is used to connect the Subclavian Artery to the Pulmonary Artery and the Subclavian is left intact. You usually can feel the pulse bilaterally on a patient with the Modified Blalock-Taussig!)

When the students weren’t listening to my heart, the instructor was – with an electronic recording stethoscope. I’ve had this done before, back in 1977 at the University of Alabama at Birmingham (recounted in this post.) But back then it was a Stethoscope head connected to wires that ran to a machine the size of a toolbox, that recorded my heart on a cassette tape. This one looked like a regular Stethoscope, perhaps a little thicker around the head. It would record (sensitive enough that it recorded a cough!) and then transmit the recording to a laptop computer via Bluetooth! My Geek side started getting the best of me, and I was developing a very, very bad case of STEVE WANT! But I knew that if I asked how much it cost, the instructor would inject me with 1000 cc’s of reality. Reality is a difficult drug to take – it’s good for you, but can make you feel pretty lousy.

I enjoyed my visit to the Nursing School and I’d like to thank everyone for making me feel so welcome. Even if none of the students chose to work in Congenital Cardiology, they’ll bump into other patients like me – it’s estimated that in the United States, there are slightly more adults living with a Congenital Heart Defect than there are children. Adults with Heart Defects are living longer and better, and we’ll have “normal” medical problems in addition to our bad hearts. And today’s Cardiac Kids are growing into tomorrow’s Heart Warriors.

So its important for those of us with a heart defect to “meet the public” – and not just to raise awareness, but to educate. To guide new Heart Families through this scary world we never expected to enter, but also to give the professionals who will be taking care of us a chance to learn from us. it doesn’t matter if someone is the best Heart Surgeon, the best Cardiologist, or the very best Cardiac Care Nurse… sometime in the past, these people had no idea that Heart Defects even existed.

Someone had to teach them.

Good Nurses

November 10, 2010

NOTE TO READERS: We’re off on a Secret Mission tomorrow, so there may not be a post on Thursday. You’ll hear all about it later, though!

I was looking through my 1967 Johns Hopkins records and especially looking over the nurse reports. The nurse reports make up over half of my total file – neat sheets with handwritten measurements gathered at certain times. This was long before electronic records and most monitoring equipment. Nursing was really a hands on profession, not that it isn’t now. I’ve been cared for by some awesome people over the years, and a lot of them are nurses. You see and interact with the nurse a lot more than you do with the doctor, so when you are assigned a really good nurse it is a Great Thing and a Big Deal.

A big part of the job is observation and reporting, and in the ’60’s you were doing this constantly. There weren’t many automatic alarms that would go off when something was wrong; it was the nurse’s job to almost see problems coming. You were looking, observing, and making notes on every patient, so a good nurse had her head on a swivel. The nurses reports in my file I’ve nicknamed my “pee and poop sheets” because that was a major part of what was recorded: My temperature, amount taken in (input), amount expelled (output), and what I was doing at the time. Remember I was five months old; at any time of day I might be “playing”, “sleeping”, or more than likely, “crying”. Hey, I was a baby, and you people had just cut my chest open and tinkered around in there. You’d cry, too!

The order of the day was “Observe the patient.” You can almost hear the nursing department answer OK… what are we looking for? Trouble is, Cardiac Surgery was only about 25 years old then – they knew they had to prevent Pneumonia but after that, no one was really sure what to expect. So the Surgical Department just told them to observe the patient closely.

I had a fever on my 3rd day post-op. Hopkins called in a doctor who specialized in combating fever. “We see this a lot,” he told my parents. “Many patients spike a fever on the third day after their surgery, we don’t know why. If this is a 3 day fever, it will last about 24 hours and then it will disappear. We don’t know why that happens, either.” And he was correct – it was a 3 day fever, and it was gone 24 hours later. But he also told the nurses to keep a close eye on me, just in case it wasn’t a 3 day fever.

How do I know? The nurses report for that 24 hour period is crammed with notes. The best I can figure, they were checking on me every fifteen minutes for almost 30 hours.

Good nurses are lifesavers – literally!

 

 

 

Heart Defects and the 2010 Midterms

November 8, 2010

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

On the cutting edge

November 5, 2010

Do you think my child needs one of those medical information bracelets? He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Yes, I would certainly get a Medical Information bracelet. I personally use MedicAlert, because you aren’t limited by whatever you can squeeze onto the bracelet. MedicAlert is a little more expensive – you have to pay for both the service and the jewelry – but you can have so much more information. I don’t just have a heart defect, I’m also in Heart Failure, you can’t read my pulse, my blood pressure, or give me an injection in my left arm because of my Blalock-Taussig shunt, and I take a small bucketful of medication every day. A “bracelet” that listed all that would be as long as my arm! (just try getting it through airport security!) With the MedicAlert bracelet, you discuss your detailed health information with a nurse over the phone and your bracelet comes with a telephone number and a numerical code. If something happens and you can’t speak, emergency personnel can call the number and enter the code, and they will have instant access to all of your information. Most of their bracelets are waterproof, so you can wear them in the shower – after all, it can’t do you much good if you have passed out in the bathroom and your bracelet is lying on your bedside table.

The Medical ID bracelet is important and could save your child’s life… but that isn’t the reason for today’s post. The second part of that statement made my hair stand up: He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Holy cow! Read this carefully, it is very important that it be understood: A heart defect can not be fixed. The word “fixed” implies that it is good as new. It isn’t. A heart can be repaired through surgery, which means that it can be made to function – perhaps not in the normal manner, but it is functional.

It is hard to believe that there are still doctors who tell Heart Parents that their kids are “good as new!” They used to tell them that, back when I was growing up – because they didn’t know any better. There weren’t that many Cardiac Kids around, so no one really had any idea what the future held for these children. But this child had been born with a critical health problem, had survived a delicate surgery, and would get better. He or she might not have as long or as full a life as the other kids, but we had won this battle. Now go, get out there and enjoy your life! And for years that was the common practice, because kids with heart problems didn’t live as long as other children. As an example, Cardiologists at Johns Hopkins Hospital told my parents that if I needed a second operation, it would probably have to happen ten years in the future. My parents asked what kind of surgery I would need, and after a long, uncomfortable pause the doctors admitted that they didn’t know. “That operation probably hasn’t been invented yet.”

But then something totally unexpected happened: Cardiac Kids grew up! As we grew, we had more heart problems – some of them related to our original defect, and some of them new. Doctors had new tools they could use to help us out, either a new drug or a better surgery. They could do a lot more with Catheterizations, too. And while we were proving that we could grow up, doctors were discovering that those heart problems were still popping up, sometimes years after we had been “fixed.” And their thinking started to change.

Today, most Cardiologists will tell you that your child’s heart has been repaired – and he or she will always need specialized cardiac care. Their heart is misshapen, blood vessels run the wrong way, it has holes where there shouldn’t be any, and has been altered by surgery. Even after they grow up, Heart Children will always have to make allowances, take medication, go see their Cardiologist, and stay on top of their health. And they will have to do this forever – because even though their heart is functional, it isn’t normal. No it isn’t fair, but this is the way it is.

And if your Cardiologist is telling you your child is “fixed”, you seriously need to consider finding another Cardiologist. Because this one is living in the past.

And Cardiac Kids live their lives right on the cutting edge of medical science. We always have, and we always will.