Archive for the ‘Hypoplastic Right Hearts’ Category

Cheer Up!

October 7, 2010

It’s been a rough week for those of us with a Congenital Heart Defect, and things have been pretty gloomy here at Funky Heart Central. But a few days ago a friend took a photo and added some text. After it was printed, she and her husband signed it, slipped it into an envelope, and mailed it to me. It arrived today and things are beginning to look brighter! (Click Photo to Enlarge!)

Thank you, Amanda and Jim!!


Denver Congenital Heart Walk 2010



July 27, 2010

My gift from Hypoplastic Right Hearts

An honorarium is traditionally a small gift  given to show appreciation. I had spent most of last Friday in my hotel room, trying to recover from my fall at Bush International Airport. I had slept all day (or rather tried to sleep; I had too many bumps and bruises to really get comfortable) and gotten up in the late afternoon. I wanted to try to go to the Group Dinner sponsored by Hypoplastic Right Hearts and meet some of the other members.

I almost changed my mind – the best that I could do with one hand was a pair of shorts and a T-shirt – but I decided to go anyway. People would understand, I thought, and I needed to move around. Yep, it hurt; but if I didn’t get moving and working everything out it would hurt that much worse later.

So I got my act together and went – and had a great time. Yes, we talked hearts, but only a little. Most of the talk was about life – average, mundane things. Having a defective heart can occasionally be The Elephant in the Room, a real conversation stopper. But when everyone brings their own elephant, no one else notices.

I was very surprised when I was called to the front of the room and presented with… a pair of dog tags! I had coined the phrase Heart Warrior not long after Adventures of a Funky Heart! began, and apparently the phrase has struck a chord with Heart Parents. And knowing that no warrior enters the fray without his dog tags, the members of Hypoplastic Right Hearts awarded me a set engraved with my name and the phrase A Heart Warrior saving the world for CHD Families.

That was really a boost, since at the moment I was feeling more than a little down. Hey, all I had managed to accomplish so far was to trip over a laptop bag and win a free trip to a local ER. Not an outstanding start at all. But my dog tags coupled with the kindness and understanding of nearly everyone I met got me back in the right frame of mind.

So thank you all, and a very special Thank You to Bob and Jim from Hypoplastic Right Hearts, Sheila at the Guest Services desk, and Mr. Cecil Adams, Night Manager of the Hyatt Regency Houston.

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.

Heading for Houston!

July 20, 2010

Getting my plans together today to travel to Houston, Texas, for Hearts Re-United 2010! Hearts Re-United is a Congenital Heart Defect (CHD) weekend conference sponsored by Hypoplastic Right Hearts. Hypoplastic Right Hearts is a national CHD Support Group offering support for Heart Defects that affect the right side of the heart.

Our hotel is going to be the Hyatt Regency Houston, but the conference meetings won’t be held there.  We’ll meet Friday at the Houston Children’s Museum and on Saturday at the Houston Downtown Aquarium. At each location the parents and adults will be in the meeting rooms “talkin’ ’bout hearts” while the children are chaperoned in the exhibit areas.

I’ll be liveblogging both Friday and Saturday if possible – Not only do I have a new laptop (which I am still trying to figure out!) but also Wi-Fi access is limited in both locations. Plan B is to take good notes and post when I return to the hotel, but hopefully I can blog the meeting as they occur. Also I will be speaking on Saturday, and I will post the text of my presentation as soon as possible.

I’ll have to pace myself a little more than usual – hot and humid weather can be rough on a CHDer, so you have to take it a little easy. But with good planning and a good hat, the heat can be overcome. But be careful…. there is a fine line between overcoming the heat and letting the heat overcome you! Hopefully no one will have that problem!

I’ll get to meet a lot of Cardiac Kids and their parents while in Houston and I’m really looking forward to it! See all of you soon!

I’ll be there Thursday night;

“Houston, we have a problem!”

June 20, 2010

We’ve run into a little problem with the Hearts Re-United event (.pdf file) in Houston. Not really a problem, but rather an inconvenience.

The meetings are not being held at the host hotel, but at two separate venues. No problem there. But one venue does not have Wi-Fi. The other one does, but it is a private system for employees only. So live blogging the event may not be possible.

I do enjoy reporting the event as it happens (and readers seem to enjoy following along) but if that is not possible, I’ll switch to Plan B. Plan B is simple – a pencil and notebook (the paper kind). I’ll take good notes and write a blog post later. A lot of information is discussed at these Congenital Heart Defect (CHD) Conferences and hopefully some of it will be useful to you.

My presentation takes place on Saturday July 24, followed by a question and answer session with adult survivors. I’ll post a copy of my presentation online after I give it.

Houston in July could be just a bit warm (YA THINK?) and I am glad to say that I have a new hat! My old hat is still in Durham, North Carolina, as far as I know. I packed my suitcase after the Saving Little Hearts/Mended Little Hearts CHD Symposium last year and completely forgot about my hat as I checked out… total bummer! It probably went to the hotel Lost and Found, but hopefully by now someone has given it a good home.

I am looking forward to the trip and to meeting a new group of Cardiac Kids and their parents! Will I meet you there?

Heading to Houston!

May 27, 2010

Get Heart Force One ready to fly, the Funky Heart is heading to Houston, Texas to participate in Hearts Re-United 2010, sponsored by Hypoplastic Right Hearts!

A medical conference and family vacation for families coping with Hypoplastic Right Heart Syndrome, Hearts Re-United 2010 will be held July 23 and 24, 2010. Attendees will be housed at the Hyatt Regency Houston. Medical Presentations will be featured Friday and Saturday mornings with group activities during the evening, including the option to attend a Houston Astros baseball game!

Also, I will be making a Presentation Saturday morning and will also be part of an Adult Survivors Panel later that day. As always I plan to live blog the event, so you can “look over my shoulder” as the day goes along. The hotel has Wi-Fi, but the medical meetings are being held in other locations that might not have internet access. As always, if there is no internet available I will take notes and post that night.

I enjoy meeting other members of the CHD family, and I think they enjoy meeting me. When people (especially young parents) learn that I am 43  and doing well, they seem to be reassured that their child can make it; he or she does have a good chance to grow up and have a wonderful life. And get this – I am a little bit shy when I first meet you, but I warm up pretty quick! And when I start talking about beating CHDs, you almost have to put tape over my mouth to get me to be quiet!

So I think it’s going to be a lot of fun in Texas, meeting Heart Moms and Heart Dads and hanging out with the Cardiac Kids. I’ll post regularly, as always, but why don’t you make plans to join us? They say that Texas is a friendly place, I’m sure they’ll be happy to set a place at the table for you!

See you there!

Partners of the Heart

November 24, 2009

In honor of Red and Blue Day, what follows is a reprint of an article I wrote for the November 2009 issue of The Right Heart Times, the newsletter of the CHD support group Hypoplastic Right Hearts:

The Blalock-Taussig Shunt (Shunt means “detour”) was the brainchild of one of the most unusual people in medicine: Dr. Helen Taussig. Despite being Dyslexic and slowly losing her hearing after becoming a doctor, Taussig had overcome both disabilities to become the head of the Cardiac unit at the Harriet Lane Home for Invalid Children, located at Johns Hopkins Hospital in Baltimore, Maryland.

While at Harriet Lane she began to study Congenital Heart Defects, especially Tetralogy of Fallot (ToF). ToF children suffered from a combination of four heart defects which led to the mixing of oxygenated blood with unoxygenated blood inside their damaged hearts. This caused them to have Cyanosis (have a bluish tinge to their skin due to poor blood oxygenation), have poor stamina, difficulty feeding and usually die before they reached ten years old.  Despite the fact that these children were breathing hard and deep, they were suffocating – and there was nothing that Dr. Taussig could do about it.

Taussig’s frustration would continue until 1943, when Hopkins hired Dr. Alfred Blalock as the new Chief of Surgery. It wasn’t long after his arrival that Taussig and Blalock had a conversation that would change the world.

Hopkins legend states that Dr. Taussig literally broke into a conversation between Dr. Blalock and her boss, Dr. Edwards Park, and convinced him to attempt a surgical repair of the defect. Blalock reminded her that it was impossible to operate on the heart (at that time it was impossible) but Taussig contended that what she had in mind was not an operation on the heart itself, but moving the blood vessels around to send more blood to the lungs. She had the idea, but since she was not a surgeon she could not act on it.

Little did she know that he already had a partial answer. While studying the effects of shock on the human body, Blalock and his assistant Vivien Thomas had sewn a smaller artery onto the Pulmonary Artery in an attempt to increase blood pressure. Blood pressure had not been affected, but blood flow increased. The challenge now was to recreate the effects of ToF in a dog, perform the arterial connection, and evaluate the results. Swamped with his teaching duties and surgical schedule, Blalock turned the assignment almost completely over to Thomas. An African American with a high school education, Thomas had gotten a job in Blalock’s lab after dropping out of college and had become Blalock’s most able assistant.

Re-creating either the heart defect or the planned repair often proved fatal for the dog, but finally Thomas found the perfect combination and a mutt named Anna survived. The next step was to teach Blalock the procedure. The surgeon had observed the operation several times but had never done it himself; Thomas had done the procedure several hundred times – all on dogs.

On November 29, 1944, the trio tried the new surgery. They may have operated sooner than they wanted to, but young Eileen Saxon’s condition was deteriorating. Although she was 15 months of age, Eileen weighed only nine pounds and was badly cyanotic.

As they were preparing for surgery, Blalock turned to his scrub nurse and quietly asked her to summon Mr. Thomas. Although Thomas had taught him the procedure, he wanted his assistant close by in case there was a problem. Thomas entered the surgical suite and stood behind Blalock, guiding him through the operation and giving advice.

Making a five-inch incision on Eileen’s left side, Blalock clamped and cut her Left Subclavian Artery. The Left Subclavian branches off of the Aorta, travels along the shoulder blade (the Clavicle) and down the left arm. For a visual reference, the Left Subclavian Artery is located almost directly behind a police officer’s badge.
Blalock then placed clamps on the left branch of the Pulmonary Artery and made a small hole in the artery. Gently pulling the Subclavian downward, Blalock sewed the vessel onto the Pulmonary Artery, took a deep breath, and disconnected the clamps.

Eileen’s cyanosis almost instantly faded. “She’s a lovely color now!” Taussig exclaimed. Blalock’s surgical notes are a bit more understated, reporting that “the circulation in the nail beds of the left hand appeared to be fairly good at the completion of the operation.”

Originally known as a “subclavian to pulmonary anastomosis,”the operation was soon renamed the Blalock-Taussig Shunt, after the surgeon who performed it and the doctor who conceived it. Thomas received almost no credit for his part of the procedure during his lifetime.

Survivors of the Blalock-Taussig Shunt often have difficulty getting a pulse or a blood pressure reading in the arm on the shunt side (because of the disconnected Subclavian Artery) and should avoid having injections into that arm. In the late 1970’s the Modified Blalock-Taussig Shunt (MBTS) became popular. The MBTS leaves the Subclavian intact and makes the Subclavian-Pulmonary connection by inserting an artificial tube and avoids the arm problems created by the original Blalock-Taussig.
Eileen Saxon did well for a few months but again became Cyanotic as her shunt failed. She underwent another Blalock-Taussig Shunt (on her right side this time) but passed away just before her third birthday.

Blalock’s surgical team performed almost 200 Shunts in the space of a single calendar year and the operation opened the door for Congenital Cardiac Surgery. He continued to operate until just before his retirement in 1964, and died six months later.

Dr. Helen Taussig became known as “the Mother of Pediatric Cardiology” and had a part in averting the Thalidomide crisis in the early 1960’s. She retired in 1963 but often returned to Hopkins, staying current on the latest Cardiac research and contributing  much of it herself. She was killed in an automobile accident in May of 1986.

Vivien Thomas continued to stand at Blalock’s shoulder and eventually became Director of the Johns Hopkins Hospital Surgical Research Laboratories. He trained many of the surgeons who would become famous for their heart surgery accomplishments and invented many of the procedures that they would use. He received an honorary doctorate in 1976 and retired in 1979. Thomas wrote his autobiography, Partners of the Heart: Vivien Thomas and his work with Alfred Blalock and died in 1985, just before the book was published.

Anna the Dog served as the mascot of the Johns Hopkins Surgical Labs until her death in 1957.