Posts Tagged ‘Heart Surgery’

‘These wounds I had on Crispin’s day.’

October 24, 2010

Monday, October 25:  Saint Crispin’s Day


This day is called the feast of Crispian:
He that outlives this day, and comes safe home,
Will stand a tip-toe when the day is named,
And rouse him at the name of Crispian.
He that shall live this day, and see old age,
Will yearly on the vigil feast his neighbours,
And say ‘To-morrow is Saint Crispian:’
Then will he strip his sleeve and show his scars.
And say ‘These wounds I had on Crispin’s day.’
Old men forget: yet all shall be forgot,
But he’ll remember with advantages
What feats he did that day.

– from Henry V by William Shakespeare, 1599

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What you need in a Surgeon

September 15, 2010

It had to happen. Consumer Reports is now rating Surgical groups that perform Bypass Surgery. Just pick up an issue; you’ll be able to find out who makes the best toasters, washing machines, and who can re-route your arteries.

If it were only that easy for Congenital Heart Surgery. There are 35 different heart defects – this is the “base” number, that doesn’t count any defect that may have elements of two or more defects – and a multitude of different surgical options. Consumer Reports only looks at Bypass Surgery, a Congenital Surgeon may repair an Atrial Septal Defect (ASD) in the morning and perform a Bidirectional Glenn Shunt in the afternoon. If he’s on call he may come to the hospital in the middle of the night not knowing what problem he’s facing.

So assuming you have time to pick a Congenital Heart Surgeon, what do you need to look for? Experience and skill are the two basic factors, with a little understanding of what the numbers mean.

Experience is easy – Doc, how many years have you been operating? How many heart surgeries have you done, total? The Cardiologist says my son needs to have the *** Procedure, how many of those have you done? Answers to these questions will help you decide.

Now comes the not so easy part – try to determine your surgeons skill level. Let’s invent a situation: You ask the surgeon how his patients do after the operation, and he tells you that 80% of them go on to lead full lives. Now we need to know something else – what kind of operations is he doing? If our fictitious surgeon is fixing ASDs and 80% his patients “go on to lead full lives”… RUN! That’s a pretty low number. But if he is an Hypoplastic Left Heart Syndrome specialist and he usually performs the Norwood Procedure, 80% is very successful.

This is where it helps to be familiar with the Aristotle Complexity Score, and like so much about heart defects, the general public doesn’t know it exists. Most of the CHD community is even unaware of its existence. The Aristotle Score is a “rating system” of congenital heart surgical procedures, based on the three factors. Each factor is assigned a score of 1 to 5 points, then the points are totaled to find the Aristotle Complexity Score.

The first factor considered is Mortality: Historically, what percentage of patients having this surgery perish during or immediately after the procedure? An operation with a low Mortality receives one point; the highest Mortality receives 5. The next concern is Morbidity. Morbidity is defined as “a diseased state or symptom”, but in this context it is a measure of how long the average patient spends in the ICU after the operation. Again, short stays earn one point and the longest earn a five. The third consideration is the perceived difficulty of the operation. All heart surgery is difficult and requires years of practice and training – if it wasn’t, there would be a surgical center on every corner. But closing an ASD is easier than performing the Arterial Switch.

So every heart surgery is rated, with the “easiest” (a straightforward ASD repair) being rated at 3.0 and the most difficult (A Biventricular repair) receiving a 15.0. For example, my 1967 Glenn Shunt would be scored a 7.0. The Blalock-Taussig Shunt is a 6.8, while the Modified Blalock-Taussig (which uses an artificial tube to make the Subclavian Artery to Pulmonary Artery connection) is considered not quite as difficult at 6.3. The Score does not exist as a “ranking system” of surgeons (almost like Consumer Reports)  but as information. If the OR calls Recovery and tells them that we’re sending down a patient with an Aristotle Score of 10, they know a very ill person is on the way.

So knowing the surgeon’s experience and skill level is really only half the question. If you were to be able to determine how difficult his work is, that could increase (or decrease) your confidence level.

Weighed and Measured

July 18, 2010

Whoa!

A Heart Mom is threatening to go ballistic on someone:

I told my husband what had happened and of course his solution to the problem involved me waving around my giant stick and teaching them a valuable lesson about staring at our small child.  While that approach may have gotten some results, not to mention cause a pretty big scene, it wasn’t one that I felt was appropriate for our children to be witness to.

Good thing she kept her wits about her. Local law enforcement authorities usually don’t take kindly to people waving large sticks in public, no matter what the reason. The point of conflict here – as you may guess – was a group of people who seemed to have nothing better to do than to stare at her Cardiac Kid’s scars. It turned into a real whisper-fest, and even though the child was a bit young to recognize what was happening, Mom saw it. And the steam was coming out of her ears.

“You have been weighed, you have been measured, and you have been found wanting. In what world could you possibly beat me?” – A Knight’s Tale, 2001

The basis for this line is from the scriptures, specifically Daniel 5:27 – Thou art weighed in the balances, and art found wanting. The King wasn’t good enough, so God slammed the door on his kingdom, and that very night the King perished. And that is exactly what was happening here: the local wags had seen the scar on her son’s chest; they had decided that he was…. different, somehow, and that wasn’t a good thing; and they had instantly judged that neither he nor his mom were part of the Cool Crew. Too bad, so sad. And as much as I hate to say it, that’s a fairly common reaction.

The hardest battle a Cardiac Kid has to fight will not happen in an operating room, but rather in their schoolyard playground. Kids aren’t necessarily mean, but they are brutally honest. You don’t ask “What happened to your chest?” or “Why you got to get tired all the time?” and they will stare – they’re children, after all. You sort of understand that this is the way children usually act. And Cardiac Kids have to fight these battles all own their on, just like everyone else. It’s how children learn to interact with other people, and hopefully grow past that stage.

But adults judging little kids? NOW we’ve got a problem.

Bring that behavior here, and I’m just crazy enough to start quoting Shakespeare: “Then will he strip his sleeve and show his scars, and say `These wounds I had on Crispian’s day’…We few, we happy few, we band of brothers (and sisters!), for he who sheds his blood with me shall be my brother.”

You see, no matter what snap judgement you may make of that kid with the scar, we see ourselves as survivors. And no matter what you may think, we weigh out correctly and we measure up.

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

WOMB-too

July 1, 2010

The first time I heard my heart “speak” was in 1977. I figured that it couldn’t speak English, but I knew that it made some type of sound that an expert could understand. I mean, every time I had ever been to see a doctor, one or more people has placed a stethoscope against my chest. Something’s got to be ratting around in there, right?

On my first full day at the University of Alabama at Birmingham (UAB) Hospital my Cardiologist, Dr. Lionel Barjaron, asked if he could “tape” my heart. I was sort of expecting something to do with medical tape, but they lay me on a table and did the usual Stethoscope against the chest routine. But this stethoscope was attached to a microphone, and that was attached to a tape recorder. They thanked me half a dozen times, and told me that the tape would go to the medical school for the doctors-in-training to listen to. My strange plumbing gave off sounds that would tip a doctor to a problem, and obviously the vast majority of hearts are healthy and don’t produce the sounds they were looking for.

“You want to hear what it sounds like?” Dr. Barjaron asked, and turned on a speaker. “WOMB-too,” it kept repeating over and over, the first sound exactly like the word womb and the second sound like the word tooth with the th left off.

And though I hadn’t realized it, this was not the first time I had ever heard my heart speak. I was told that the heart beat – the “lub-dub” sound we are all familiar with – is caused by the valves slamming shut after the heart chambers fill with blood.

A week later it was the same room, and the same stethoscope/microphone.

“We have to do this again?” I asked. It hadn’t hurt, but I figured the recording had been a one time event.

“You’ve had surgery, and now your heart is making different sounds,” Dr. Barjaron responded. “We’d like to record those, too.” As proof he turned the speaker on again. “You hear the difference?”

“Not really,” I said. To me, it was the same “WOMB-too” as before.

“You just haven’t had any lessons on what to listen for, but to me it sounds a lot different from a week ago,” the Cardiologist assured me. “You’ll just have to trust me on that one.”

Maybe it picked up Dr. Pacifico’s  accent, I thought, thinking about my surgeon’s Brooklyn born voice.

So for a while my heart’s voice lived in my body, but also on a tape at the UAB Medical School. It’s probably gone now; that was 1977, after all. And while I own a stethoscope and have heard both healthy and sick hearts speak, I don’t know what they are saying. It’s a subtle language, the language of the heart, and can be easily misinterpreted.

But my heart can say whatever it wants, as long as it just keeps on talking.

HLHS Advice

June 22, 2010

Hypoplastic Left Heart Syndrome (HLHS) is a known killer. It is 100% fatal if left untreated, and before 1981 there was no treatment. For several years after that there were very few survivors as doctors learned that a surgical correction could not be done in one step, but rather took two (and eventually three) separate operations. Infant Heart Transplantation was a dream until 1984.

So doctors have only been able to combat HLHS for 30 years, and there is still a lot that is unknown. The hows and the whys of the defect are still only being guessed at. The operations are delicate: not only are they demanding on a newborn’s Circulatory System, but so much depends on blood flow and pressures in the heart. All of the blood now flows through the Tricuspid Valve, which wasn’t designed to move that much blood. The proper “balance” often depends on the patient and there is no “standard” series of operations for HLHS. Each one must be customized to the individual.

Which leads to this interesting report from the March 2010 issue of the  medical journal Pediatrics. 749 Pediatric Cardiologists were surveyed concerning their management recommendations when giving a diagnosis of Hypoplastic Left Heart Syndrome. 99.7% of all Pediatric Cardiologists recommended the three surgery approach. 67% of the doctors discussed a heart transplant with the new parents, and 62.2% discussed Compassionate Care without a surgical intervention. (The high numbers in each category shows that the doctors were not limited to one response.) However, only a small percentage – 14.9% discussed all three options.

Also, the doctors were asked what they would recommend when confronted with a prenatal diagnosis of HLHS. Almost all of them (98.8%) recommended continuation of the pregnancy with surgery after birth. 53.5% argued for continuation of the pregnancy with Compassionate Care/no surgery; and a very high 74.3% discussed termination of the pregnancy. Only 36.5% discussed all three options.

Interesting numbers, and much to think about. The bottom line is that most Cardiologists would tell you to fight for your child. But why would so many of them recommend ending the pregnancy when HLHS is diagnosed prenatally?

UPDATE: A reader has brought to my attention (See comments) that the research report states that the Cardiologists/Surgeons discuss these options rather than recommend them. A discussion, of course, is not a recommendation. Some patients may treat it as such (“The doctor will probably know best…”) but it does answer my closing question much better – and reflect the experiences of my readers who have chosen to comment.

I have stated before that I am not immune to mistakes, that is why I try to include a link to anything that is not in my personal experience – so you can check my work for yourself.

And I would like to publicly thank the commenter for bringing this error to my attention.

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.

Look! Up in the Sky!

April 12, 2010

Remember Zeb? He had Heart Surgery on March 2, 2010.

I am happy to report that after a short break, Superman is back on the job!

Super Zeb!

Click above to see a better photo of the Man of Steel!

Once a Heart Mom…

April 8, 2010

Once a Heart Mom, always a Heart Mom.

Even after your Cardiac Kid survives that first surgery (or surgeries), stabilizes, and seems to be doing well, the Heart Mom gene never turns off. It goes into “Standby Mode” – not completely deactivated, but just below the surface. Your senses will always be heightened, always aware of any change in your child’s condition.

The doctors at Johns Hopkins Hospital had told my parents that if I had any more problems caused by my heart, they would most likely happen in about ten years. Their prediction was almost perfect – I stated having trouble 10 years and one week after my first surgery.

I was 11 years old and in the 5th grade at school, on a cold February day. I was sitting with my back to the wall of the school (I had learned that the wall faced the sun so no matter the temperature, it would be warm!) drawing with my best friend. Neither one of us could draw a straight line – I still can’t – but we were certainly trying!

My stomach had been doing flip-flops all morning. I didn’t feel bad, other than my stomach. But something was really giving it a fit – finally it came to the point that I turned my head, leaned over and puked.

It was all blood.

My friend said that I might need to go to the office (Yeah! I think so, too!) so I did. They called the local Rescue Squad, then called my mom.

The volunteer Rescue Squad building was only 2 miles away, but the members were spread out all over my hometown. They were pretty quick; just a year or two earlier they had won an award for being the best small Rescue Squad unit in the state, but they were still all volunteer. Once you dialed the emergency number – and this was 1977, before 9-1-1 was in use – whomever was on duty had to take the information and then press the big red button on the radio. That caused all the beepers carried by Rescue Squad members to go off. They would then leave their jobs and hurry to the Rescue Squad building, get the ambulance, and speed off. It was usually ten to fifteen minutes from the time you placed the call until you first heard the ambulance siren.

My mom got the call at work, twenty-five miles away. Suddenly her Heart Mom gene flipped to ON and she barely remembers what happened next.

What happened was she ran to the car – an older AMC Ambassador – and put her foot on the floor. Pedal to the metal with the engine screaming, the best cars and drivers that NASCAR has to offer could not have beat momma that day. She drove that AMC Ambassador twenty five miles in a little more than twenty minutes, arriving just behind the ambulance. The ambulance parked in the parking spot nearest the door, but momma skidded to a stop with two wheels on the sidewalk!

Daddy hadn’t arrived yet when I left in the ambulance, but momma was going with me and there was no question about it. She jumped into the ambulance as  they loaded me in, and soon we were moving. The last view I had before they shut the doors was of our car, still sitting there with two wheels on the sidewalk.

How are they going to load the buses? When you are 11 years old these questions are important.

That ambulance ride ended at our community hospital, but my journey would continue to a larger hospital and from there to the University of Alabama at Birmingham for my second heart operation. Mom and Dad were there every step of the way. I’m doing well now, and Momma’s Heart Mom instincts usually don’t come into play. I can still set them off – just let me forget to set my alarm clock and not get up at my usual time!

Once you are a Heart Mom, you’ll always be a Heart Mom. No matter how old your Cardiac Kid (or Heart Warrior) is!

Late Isaac Update!

April 3, 2010

If all continues to go well, Isaac very well could come home tomorrow!

Hmm… since he’s a patient at Duke, I wonder if Coach K would let him play in the National Championship Game Monday night? (Assuming Duke wins tonight, of course!)

Probably a little soon for that!

Update on Zeb

March 7, 2010

Zeb is doing better! The chest tube has been removed and the doctors are making noises about his coming home in a day or two! It can’t happen too soon, because the young man is scooping up all of the attention! His nurses are crazy about the little guy!

But we have a problem – Zeb doesn’t want to take his medication! That’s not good at all – some think that after being in pain a few nights ago, he now believes that the medication actually causes the pain… whenever it is time for meds, Zeb turns into a clam. Nuttin’ is getting past those lips, no way, no how!

Hopefully he will realize that his medication is a very important part of getting well and he’ll be on his way back home soon.