Archive for the ‘Catheterization’ Category

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.

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Teach your children well

July 24, 2010

This is the text of my July 24, 2010, presentation to Hearts Re-United 2010 in Houston, Texas:

My name is Steve Catoe and I was born in 1966 with Tricuspid Atresia. I had the Classic Glen Shunt operation done at Johns Hopkins Hospital in February of 1967, and I had a Blalock-Taussig at the University of Alabama at Birmingham in 1977. In 1988 I was back in Alabama to have the Fontan. I began to bleed badly when they cracked my breastbone and needed 20 units of blood. They were not able to do the surgery, but I still got all the incision pain and the recovery time, free of charge!

I’ve been asked to speak to you about some of the challenges of living with a Congenital Heart Defect. There are so many of each that I can only touch on a few. One thing we develop is a good sense of humor. When I was a little boy a common question I got asked was “How did you get so blue?” Rather than try to explain Cyanosis – and at that age, I wasn’t 100% sure how to explain it – a funny canned answer usually worked just as well. Friends and neighbors got to hear all about my love of grape popsicles and bubble gum. As I got older, it was my personal mission in life to give the craziest answer I could think of. I told one guy that I had been pouring grape Kool-Aid into the school swimming pool as an April Fool’s joke, and he believed me. We didn’t even have a pool… and it wasn’t April! Just this morning while I was down in the fitness center, I pulled off my sweaty t-shirt and replaced it with a dry one. A fellow on the treadmill said “HEY! Did you know that you have scars on your chest?” I just looked down in shock and said “Where did those come from?!?!”

When you have a heart defect, your daily energy level is going to feel like a roller coaster ride. Every day, I plan to feel on top of the world. But like the song says, “Some days you’re the windshield, and some days you’re the bug.” On those days you learn how to fake it until you make it. Karen McNalty, the woman who created the Adult Congenital Heart Association, had a trick. She’d stop and smell the roses, look at the sunset, or admire the scenery. You’d think Karen was a real nature lover. But what she was doing was taking a few moments to rest. I’ve pulled the Karen McNalty trick many times.

I used to work at a museum that rented out our meeting room, and quite often we had to set up a dozen or more large round tables. I didn’t see any reason to carry or drag those tables, not when I could kick them up on their edge and roll them like a wheel. And if I sang a few bars of “Rollin’ on the River” while I was doing it, everyone would think I was crazy, not sick.

In the 1930’s radio show The Shadow always asked “Who knows what evil lurks in the hearts of men?” The Cardiologist knows! Some of the most intelligent people in medicine choose to work in Cardiology and if you have a heart defect, you get to meet them! I see an Adult Congenital Cardiologist at Emory University in Atlanta, and not only do I have him in my corner, I have his partner and all their nurses at my back. And they are my Weapon of Choice. Because when I have to fight my heart defect, I do not fight fair!

A few months ago I attended a speech given by a retired doctor with Tetralogy of Fallot. He said “One day we’ll live to be 80, 90, or even 100 years old.” We’re well on our way to that goal – just about 95% of all children having heart surgery grow up, and for the first time, Adults with CHD outnumber the Cardiac Kids.

I’m 43 years old, and I have seen some amazing changes in Cardiology. My first EKG took more than an hour and was printed out on a long roll of cash register tape. My second surgery took place before anyone had thought of a cough bear, so twice a day two nurses would come into your room, sit you up, and pound on your back until you coughed lung gunk into a cup. And this was not long after surgery! I’ve never had an MRI before an operation because MRIs didn’t exist. And if I have seen all this, can you imagine what is coming next?

A Left Ventricle Assistance Device is a small pump that can be connected to a failing heart and keep it going longer, hopefully giving enough time to find a good heart for transplant. And some models are being tested as “destination therapy.” What does that mean? Destination Therapy means that the pump can be the last step – no need for a transplant. These devices are powered by a battery pack outside of the body, and the batteries are getting smaller. But Robert Jarvick is working on an Assistance Device with no battery pack at all. It gets its power through the use of tiny magnets.

At Wake Forest University and in Pittsburgh, two different teams of scientists are growing organs in the lab. The Wake Forest team has actually grown bladders in the lab and implanted them into humans as transplant organs. And since the patient is the source of the cells they use, there is no chance of rejection. As far as the immune system is concerned, that bladder is original equipment. They’re also working on heart valves and blood vessels.

Surgical techniques are improving, too. My 1967 operation was the Glenn Shunt. A lot of your children also have the Glenn, but mine is the original version that only sends blood to the right lung. Today’s Glenn sends blood to both lungs and reduces the strain on the right lung. The Fontan didn’t provide the results that doctors were looking for, so the operation was redesigned – twice. Does anyone remember the Blalock-Hanlon Shunt? That was the operation used when you had to open the heart and create an ASD, and that was done as part of my first operation . It’s still around, in the back of musty old textbooks. But the majority of ASDs are created by Catheter now and the procedure is much easier on the patient.

With the proper level of care Cardiac Kids can have a long life. But what good will that life be if they live in fear, if they run and hide, or if they say “I can’t, I have a bad heart.”?

Teach your Heart Child to embrace life, enjoy it, and make the most of it. Teach them the self confidence to find a way to complete a task even if it isn’t the accepted way. Be careful, but don’t be scared.

And teach them that every heart deserves to live a lifetime.

Working with a Congenital Heart Defect

May 23, 2010

“Just for fun,” he says, “Get a job.”

The Way it is, (1986) Bruce Hornsby and the Range

It is possible to work with a Congenital Heart Defect (CHD). In fact, the majority of adult CHDers that I know have jobs. But like everything else in life, you have to be willing to compromise.

Heart Warriors learn the art of compromise early. Sometimes no matter how bad we want something, our busted Circulatory System just won’t let us have it. So we learn to work around our heart, or find a different way. And sometimes we just have to take Bruce Hornsby’s philosophy: That’s just the way it is.

At a recent meeting of the American College of Physicians, it was stated that 90% of children with a chronic or disabling health condition are expected to live more than 20 years. The meeting concentrated on the health care needs of these young people, but many of them also enter the workforce every year.

You may have to choose your potential career earlier than your peers.These days they are pressuring you early – almost all the way from “What do you want to be when you grow up?” By the end of high school you need to have decided if you want to go to college, and where…. both decisions can impact your life greatly. One of the reasons I chose the college I did was it was so compact – I knew that I would not have a vehicle on campus and had to be able to get around. Compromise.

CHDers find out early that our bodies are much better suited for a desk job. So we need to go to a good school and build up the brain. I know several Heart Warriors who wear the disguise of a teacher, and that was my chosen career path before my third operation and the incision infection afterward threw my plans for a loop. I eventually landed on my feet at a small museum, where I worked for ten years. That job was a teaching job, we just didn’t have any desks.

Hit the books, get the grades, and then find a good job. And what makes a good job? Your criteria may be different than others. You would probably be willing to trade the big bucks for a flexible work schedule and a decent insurance plan. You don’t know when a problem could keep you out of work, and even if you are doing great, Heart Defects are expensive. The drugs are expensive, and so is that yearly Catheterization that the Cardiologist wants you to have.

Once you have that job, work at being the best you can be. Don’t overdo it, that’s a one way ticket to the Emergency Department – but be the employee that they can’t replace. Good will is like money, and you need to keep saving it up. You never know if you might need it later.

CHDers can work, and a lot of us do. And while we may compromise, we never settle for being less than anyone else. Just a little different!

That’s just the way it is; some things will never change.

That’s just the way it is; but don’t you believe them!

Is Robot Surgery worth the cost?

April 30, 2010

The coming thing in heart surgery – and almost any type of surgical procedure – is robotic surgery. Forget the popular image of R2D2 wearing a surgical cap and mask, there is ultimately a qualified surgeon at the controls of the robot. When you think of Robotic Surgery, you usually think of the da Vinci Surgical System, which has multiple uses in several medical fields. And just yesterday it was reported that a British citizen had an ablation using a robot to guide the procedure. And recently a computer was used to develop a model of a patient’s beating heart, which would allow a robot to perform a surgical procedure without use of the Heart-Lung machine.

But does Robotic Surgery provide better results or is it just the newest tool? The Robotic arm used in that British ablation cost £350,000. (Over $525,000 US Dollars; using today’s conversion rate) Who pays for the cost of that piece of equipment? Patients.

In a post on KevinMD’s website, Peggy Peck asks if Robotic Surgery for Prostrate Cancer offers any advantages. Disturbingly, the answer is “no”, despite claims to the contrary. In fact, men undergoing the minimally invasive procedure tend to have more problems in the long run.

The Law of Supply and Demand is a major factor in the use of Robotic Surgery options – with the patients providing most of the demand. The average Robotic Surgery costs about $2000 more than hands on surgery, but patients continue to demand it:

It’s come to a point where “patients interview you,” according to a urologist. “‘They say: ‘Do you use the robot? O.K., well, thank you.’ And they leave.”

And with healthcare finances shaky, a hospital almost has to invest in a Robotic Surgical System to keep up with the hospital across town. Patients undergoing any kind of surgery in which Robotic Surgery is an option should do their own research and determine if they would rather have all the bells and whistles or have their surgery done the old-fashioned way.

Reducing the number of surgical centers

April 28, 2010

A recent report by the NHS (Britain’s National Health Service) recommends that several facilities that currently offer pediatric heart surgery to be consolidated into larger centers. Of the eleven children’s heart surgical programs currently operating, it has been recommended that at least four be closed. As you could expect, not everyone is thrilled with this idea. The Patient’s Association is concerned about travel distance and the stress on families that such a consolidation will bring.

I can understand their worry – I’ve done that myself. Going to Birmingham Alabama for heart surgery is scary, when you live in South Carolina. My Adult Congenital Heart checkups require an overnight trip to Atlanta. But overall the consolidation would be a good thing.

As I have often said, The doctors I need do not practice in small towns. I have a complex Congenital Heart Defect, and not just anybody can understand my healthcare needs. If I were to go to my local community hospital (130 beds) for heart surgery, I would come out in a box. It’s that simple. And not because the staff didn’t care, or didn’t do their best, but because they would be overwhelmed.They don’t have the experience needed to handle me.

So the idea of having just a few locations where they specialize in cardiac surgery makes a lot of sense. After all, it isn’t just the surgeon who needs experience – Everyone from Pre-Op through the surgical procedure and on to Recovery is an important piece of the puzzle. What good is having the world’s best surgeon if the nurses working in the Recovery Room can’t even get an IV started?

Repetition builds confidence and skill. Learn how to do a procedure, and keep doing it… and do it correctly, each and every time. Constantly review procedures to learn how to improve them, what to do if things go wrong (and they will go wrong, sooner or later!) Studies have proven that surgical experience can lead to even more positive outcomes. And a 2004 study proved that one of the best ways to learn how to detect heart murmurs is through repetition. The study suggests 500 repetitions of learning 4 basic heart murmurs.

The key to doing any task well is 1) Do it often; and 2) do it right. Consolidating surgical centers will allow that to happen.

It isn’t working

April 11, 2010

Durn it!

Dronedarone, the Atrial Fibrillation drug that has been highlighted here before, isn’t living up to the hype. It was already known that it is not as effective as Amiodarone, but it doesn’t have the side effects that drug has. The hope was that if you developed A-Fib at an early age, or have a milder form of A-Fib, you could be switched from Amiodarone to Dronedarone. Amiodarone is an effective suppressor of A-Fib but the side effects can be terrible.

In fact, the last time I wrote about Amiodarone, I was accused of using “scare tactics” to get my point across. I wouldn’t do that – Heart Defects are  scary things; As any parent/CHDer knows. I’m not going to add to the hysteria. Behind every link on this blog is more information about a subject; click and read for yourself. HERE is the link I used the last time, it’s written by a Cardiologist. Obviously, he knows more about this drug than I do, and he isn’t a fan of Amiodarone, either.

Further testing has shown that Dronedarone is only half as effective in humans and doubles the rate of death! Dronedarone is recommended only as a second or third choice for people who can’t tolerate Amiodarone. Britain’s National Institute for Health and Clinical Excellence (NICE) gave the drug its approval after originally turning it down, based on its limited effectiveness and its price.

So while Dronedarone doesn’t look like it can be the answer everyone was looking for, perhaps it does have a place in the “medical toolbox”. For right now, the first drug of choice is still Amiodarone, and Cardiac Ablation is still an option.

And other researchers will continue to search for better answers.

Para Fuera: Dr. Richard J. Bing

April 4, 2010

Our post last Friday was about Dr. Richard J. Bing, who worked at Johns Hopkins Hospital during the 1940’s and was a colleague of Dr. Alfred Blalock and Dr. Helen Taussig. What follows is a short video about Dr. Bing, filmed on his 100th birthday.

The film centers more on the classical music that Dr. Bing has written and barely mentions his Cardiology accomplishments, but it still is a wonderful tribute to him.

Bing

April 2, 2010

He was born in Germany and composed many works of classical music. He graduated from medical school twice. He worked with Charles Lindburgh. And he started a Cardiac Catheterization program at the hospital where heart surgery was born. Not only did Dr. Richard Bing see history being made, he helped make it.

Hired in 1942 as an instructor in the Johns Hopkins University Department of Medicine, Bing traveled from New York to his new job in Baltimore. Crossing the Chesapeake Bay on a ferry, Bing noted no less than six people with Cyanosis. Their destination, he surmised, was probably the hospital. It was two years before Blalock and Taussig would attempt the first Congenital Heart Surgery, but Johns Hopkins already had a reputation. If your child has a bad heart, it was said, get them to Hopkins.

There wasn’t much at all that could be done, but Dr. Helen Taussig knew almost everything there was to know about the human heart. Taussig was a huge believer in research, and would spend hours examining defective hearts. Despite her best efforts – she often asked the parents of her deceased patients for permission to dissect the heart, and spent hours studying them in her lab – there was very little progress being made. Even after the first heart operation, very little was known. There was ONE operation, and it was designed to help relive only ONE defect. Everyone else was still out in the cold.

By 1945  Dr. Alfred Blalock asked Bing to set up a Cardiac Catheterization unit at the hospital. Dr. Helen Taussig, who had already been eyeing him suspiciously, hit the roof. Dr. Bing explained their constant disagreements:

She was very jealous and guarded her territory; she considered the sick children as her own, having no family herself. She was also deaf, which increased her suspicion of the world beyond.

(That link contains not only a good description of Taussig-Bing Anomaly, but an in-depth look at Johns Hopkins Hospital during the Blalock-Bing-Taussig years. I highly recommend reading it!)

Dr. Bing eventually left Johns Hopkins, continuing to do major research in the Cath Lab. While at Wayne State University he did some of the early work involving PET scans, using computers belonging to Ford Motor Company to run the scanner.

Dr. Bing retired and now lives comfortably in California, and last year celebrated his 100th birthday!