Posts Tagged ‘Baltimore’

The Road to Baltimore

February 17, 2010

“You got how much snow?” I asked.

“About four inches,” my father said. My flight had left South Carolina about 9:00 AM Friday morning; and the snow had begun to fall about 4:00 PM. I called home Saturday morning like I usually do, and my father had told me about the unusual snowfall.

In just a few hours I was scheduled to speak to the members of the Broken Hearts of the Big Bend, and I planned to speak about my first heart operation. And now my dad is telling me about snow on the ground back home.

Deja vu all over again, as Yogi Berra might say. I was getting ready to talk about how my parents drove from South Carolina to Baltimore, fought through the worst snowstorm in recent memory (Baltimore’s 24 hour snowfall total that night has been topped twice since then) to get me to Johns Hopkins Hospital for my first heart surgery. And my father is talking about snow on the ground. If there was ever a sign that I needed to say what I had planned, this was it.

My dad is a retired textile chemist who has worked in cotton mills and fabric manufacturers all his life. He occasionally calls himself a linthead, an old term left over from the days when cotton mills peppered the South Carolina landscape. My mom also worked in textiles, usually on the retail end.  But on one night in early 1967 these two Southerners went above and beyond the call and in the process became Heart Parents.

I won’t tell the story again; I posted the text of my presentation and also a video of my speech earlier. My audience was made up of Heart Parents, most of them young, just like my dad and mom were. They have the advantage of having the internet, overwhelming amounts of information, support groups, and instant communication. My parents were on their own and knew no one else who had ever been through anything like this.

You need a special kind of strength to dig your heels in and fight against Heart Defects. Two lintheads from the cotton mills found theirs on the road to Baltimore… and that same strength is in you.

Heart Moms and Heart Dads

February 13, 2010

This is the text of my presentation to the Broken Hearts of the Big Bend Regional Conference on Congenital Heart Defects. (February 13, 2010, Tallahassee, Florida)

My name is Steve Catoe, and I was born in 1966 with a Congenital Heart Defect known as Tricuspid Atresia. If you are not familiar with that defect, Tricuspid Atresia means that my Tricuspid Valve – which is the door connecting the Right Atrium to the Right Ventricle – does not exist. Because of it, my Right Ventricle is very small and almost cut off from the rest of the heart.

I write a blog named “Adventures of a Funky Heart!”, where I write about growing up with a heart defect, the latest in Congenital Heart research, and news about advances in the field. I try to make it interesting and use a little humor, so hopefully you’ll keep coming back and reading every day. Hopefully I can help you by giving you information about heart defects that you can use – and I try to do it a little bit at a time, so you don’t feel like you are trying to drink directly from a fire hose.

Usually when I get a chance to speak to a group I talk about spreading awareness and I talk about our Cardiac Kids and I talk about adults living with a heart defect, who I call Heart Warriors. I’m scheduled to be on the Adult Survivors Panel too, and I plan to be around for the rest of the day, so if you want to talk to me about anything I’ll be here. But I asked for a little bit of extra time to tell you a story.

I was born on a Tuesday, and on Friday, they started to realize that something wasn’t right. I don’t know if my mother noticed it first, but that was probably the way it happened. Moms know their babies, and they are almost always the first one to pick up on any problem.

So they took me to my pediatrician, who figured out that I had some type of heart problem, but he wasn’t sure what. So he sent me to the nearest hospital that could help me.

The doctors there told my parents that I had Tricuspid Atresia, and they should take me home and love me, because I wouldn’t be here that long. Well my parents didn’t think a whole lot of that statement, and neither did my doctor back home. In fact, he said it was completely unacceptable.

So he found four places that could try a surgical repair: Johns Hopkins, Mayo Clinic, the University of Virginia, and the Texas Heart Institute. Mayo and Texas he threw out because of the travel distance. Virginia, which was his own medical school, he eliminated because he didn’t think they had enough experience. That left us with Johns Hopkins. He called, and things were set up for that summer. My parents would take me to Baltimore, I would be evaluated, and if possible, the Hopkins surgeons would attempt the surgery.

That night all hell broke loose. I went into heart failure, my heart rate shot up to 200 beats per minute, and I was rushed to my local hospital. I was there a week while they tried to get me stabilized; in the meantime, my pediatrician was working the phones, relaying information about me to the Hopkins doctors. They were telling him that I needed to get there as soon as possible.

Dad picked me up at the hospital and drove home to pick up momma, and we immediately left for Baltimore. Remember this occurred in 1967; I-95 hadn’t been completed yet. After driving all day they needed a break, so they stopped at a hotel in Petersburg, Virginia.

They had been asleep about an hour when Momma got up to check on me. She happened to glance out the window and it was snowing as hard as she had ever seen it snow. She woke daddy up, and we were back in the car and moving within a few minutes.

Cars were stuck in the snow all along the roadway, and daddy was stopping every fifteen minutes to wipe the windshield off with an old rag. When they passed through Washington he actually thought about putting me and momma on a train to Baltimore and catching up to us later. It’s a good thing he didn’t, because he found out later that the snow was so bad that the railroad shut down their trains for the night.

Three families were expected by the Children’s Medical Center that day, but we were the only ones who made it. The doctors examined me and then asked my parents for permission to do a Catherization. After the Catherization, the head Cardiologist came out to talk to my parents.

“He is down to hours,” he said. “We need to operate right now.” He added that my odds of surviving the operation were 50-50 but without it I had no chance. My parents had about five minutes to discuss it before they had to decide to risk the surgery or just let me slip away.

I was taken into the operating room at 10:30 that night, and the operation ended about three in the morning. My folks didn’t leave the hospital until they saw me afterwards, so it was almost daybreak when they went to a boardinghouse about a block away.

I have to admit that I begged Karen and the organizing committee for a few moments to speak to you today, almost to the point of embarrassing myself. Because that surgery took place on the night of February 17, 1967 – almost 43 years ago. My parents are just ordinary people; but that night they turned into a Heart Mom and a Heart Dad just like you. And I’m here today because they have always been willing to ask one more question, explore one more option, and go one more mile.

So I wanted to take a few moments and tell you my story, encourage you to hang in there no matter what, and on behalf of all the Cardiac Kids and Heart Warriors, to just say Thank You.

The Letter

October 27, 2009

As you may know, my grandmother passed away in early September. The shock has worn off and now we are knee deep in the difficult task of cleaning out her home.

Grandma kept everything. We really need to hire a Forensic Document team, because our most difficult task has been sorting through all of her Medicare/Medicaid paperwork, old claim forms and payment notices and trying to figure out what is important and what is not. We’re finding those government “THIS IS NOT A BILL” notices from the 1980’s – like I said, she kept everything.

Hiding in a drawer we found a yellowed envelope with my father’s handwriting. The return address was… Baltimore?

February 25, 1967

We have just returned from the hospital. We talked with one of our doctors and he seemed pleased with Steven’s progress…I am beginning to feel a little better about him now.

Written eight days after my first surgery, I’m not sure I can describe the wave of emotions I felt reading this letter. A Heart Dad for five months, my father had already done what was needed: driven me from South Carolina to Johns Hopkins, the best hospital in world, in the middle of a terrible snowstorm. Driving half way and stopping for the night, my parents got about an hour’s rest before momma woke up, looked out the window and saw that it was snowing. She woke daddy up and we were in the car in fifteen minutes. Cars were stuck in the snow all the way to Baltimore; and what could a lifelong Southerner know about driving in the snow? But they made it – three families were expected by the Cardiac Clinic that day, and we were the only ones who arrived.

The top doctor is Dr. Richard Rowe. He is a very small man about 50 years old, and Dr. Smith (my Pediatrician back in SC) says he is the best in the world. It is not hard to tell that he knows what he is talking about when he speaks… He sits down and talks with us in terms I can understand.

The Hopkins team examined me shortly after we arrived (at 10:30 PM on a Friday night; good hospitals have staff available around the clock) and Dr. Rowe came out to talk to my parents. “He is down to hours, we need to go to surgery right now.” What a decision to have to make after such a trip.

My parents spent the night in the hospital; later, a local boarding house was recommended to them. That house no longer exists. Hopkins has grown, the location of the house is now part of the Kennedy Krieger Institute. (look directly South of the Institute to see the world famous Hopkins Dome)

He will have to be operated on again… but it should be several years. That operation should cure him completely.

Rowe actually said that if there were problems, they would probably occur between my 10th and 12th year. He got it right; in February 1977 – ten years later – I started coughing up blood. That led to my second heart operation in March of 1977.

But he also got it wrong – the second operation did not cure me completely. In 1967, that was the thinking: if a child with a heart defect could make it through a corrective surgery they should do OK. Congenital Heart Surgery was only twenty years old and the oldest survivors were in their teens. No one as yet realized that a heart defect is a lifelong condition. Though I am doing great, I am not “cured.”

The letter is now in a keepsake box, along with my Rolling Stones ticket stubs, my grandfather’s 50 year employee ring, a drink coaster from London, and photographs of my nieces on the day they were born.

The Pepsi in the window

August 24, 2009

As I have related before, my parents rushed me to Johns Hopkins Hospital in the middle of a snowstorm. Finding a place to stay wasn’t a priority at first – they got me to the hospital very late, and the doctors examined me at 10:30 PM. Shortly after that Dr. Richard Rowe told them that I had hours to live and that surgery needed to be done as soon as possible. I was whisked off to surgery, and the folks weren’t leaving; our car remained parked in a parking lot where the Wilmer Eye Institute is today.

I came through the surgery, and the folks were able to find a boarding house nearby. An older man and his wife owned the place; perhaps at one time they had had a large family but the children had grown up and moved out. No matter how it happened, they were now two people living by themselves in a fairly large house close to the hospital. The place was recommended by the Hopkins staff.

Younger readers may not be familiar with the concept of a boarding house. This was 1967, after all. Probably the best description of a Boarding House is of a fairly large single owner home where the owner rents out the extra rooms. Rent could be paid by the day, week, or month. Meal policy was up to the owner; food may be included in the rental price and would be served at the usual meal times with something kept warm for those who came in later. Or a meal could cost an additional fee, with no menu choice: you ate whatever the owner was cooking that day.  Since this Boarding House was located close to the hospital, the owners were used to hosting long term residents who probably had a loved one in the hospital.

There was one phone, located on a table in the hall. Usually the wife of the homeowner answered the phone. There would be a long pause as she took the information from the caller.

“Funky Heart family! Telephone call from…,” She would shout. You did not want to receive a call from the hospital, especially at a strange hour. That was usually a sign of trouble. “… South Carolina!” Everyone would breathe a sigh of relief and one of my parents would bound down the steps to grab the phone. When your name was called you moved, because the clock was running. Three minutes from the time the telephone was answered, the operator would interrupt and ask if you wished to speak for another three minutes. She would remind you that if you said yes, an additional $1.35 would be charged to your home phone. If the phone rang and no name was shouted out, the phone call was intended for the owners.

The individual rooms did not have refrigerators, but there was a useful alternate: like most older homes, the windowsills were a little bit larger than usual. In the fall and winter you could leave perishable items on the windowsill to keep them cool. Daddy bought several glass bottles of Pepsi (the only way to get liquid products in those days) and left them on the windowsill. There was still an unopened bottle on the windowsill the day they packed up and brought me home. Not wanting to leave anything, he opened the window, grabbed it, and took it with him.

We still have that unopened bottle…. 42 years later.

Thirteen lights

May 6, 2009

I was five months old, and it was snowing. My parents were taking me to Johns Hopkins Hospital and had just driven past a sign that read WELCOME TO BALTIMORE. They knew they were racing the clock to get me there, but had no idea how close the race was – it wouldn’t be long until cardiologist Richard Rowe examined me and told my parents that I had hours to live, unless surgery was performed soon.

All that would happen later. At the moment, they had just driven into Baltimore for the first time and had no idea where to go. Yes, Johns Hopkins is located in Baltimore, Maryland, and they knew the street address. But if you don’t have a map and aren’t familiar with the city, that information is almost useless.

Daddy pulled in at an Esso service station, one of those with the words Happy Motoring! above the garage bay. This was 1967; long before the only answer you could get from a convenience store clerk was “I don’t know where that is, I just work here!” Back in those days, service station attendants were actually helpful.

“We need to get to Johns Hopkins Hospital,” Daddy asked.

“Thirteen lights,” the attendant said, pointing. “You’re on the right highway, just keep going. Go through the next thirteen stoplights. At the fourteenth light, turn right. There is a building with a dome, you can’t miss it. That’s Hopkins.”

The guy seemed confident, and daddy decided to follow his directions. Sure enough, the instructions were perfect: Turning right at the fourteenth stoplight, the famous Hopkins Dome was practically in front of them.

According to daddy, the attendant snapped out the directions as if he had done it many times before. How many people had stopped at his station trying to find the hospital? Apparently there had been enough that he had the directions committed to memory.  How many lives had he saved by knowing the answer to that simple question? I wonder if he ever had any idea.

The Secret Origin of the Funky Heart!

January 1, 2009

I’ll be in Washington DC for the Adult Congenital Heart Association‘s (ACHA) Lobby Day on February 10, 2009. The 10th is fine, but in a way I wish it was scheduled for a week later. February 17th, you see, will be the 42nd anniversary of my first heart operation.

I was born in the fall of 1966 and it wasn’t long before my parents realized that there was something wrong with me. My Pediatrician picked up on it fairly quickly, realizing that I had a heart problem, but he wasn’t sure exactly what the problem was. After seeing several doctors who were also stumped, my folks  took me to the Medical University of South Carolina (MUSC).

The doctors at MUSC figured out the problem – I had been born with a Congenital Heart Defect known as  Tricuspid Atresia. In Tricuspid Atresia, the Tricuspid Valve, located inside the heart between the Right Atrium and the Right Ventricle, never formed. But instead of there just being a hole with a missing valve, I have a wall there. Blood flow is completely blocked.

Blood normally flows into the Right Atrium and down into the Right Ventricle; then is pumped out to the lungs. It return to the heart through the Left Atrium, then to the Left Ventricle, and is pumped out to the body. Block the blood flow through the heart and you kill the owner.

What keeps me alive is the fact that there are holes in the wall that seperates the left and right sides of my heart. My blood literally takes the senic route to get through my heart, and on its journey oxygenated blood and deoxygenated blood are allowed to mix. That normally doesn’t happen, and because of it I am Cyanotic – the amount of oxygen in my blood is lower than normal.  I gasp for breath and tire easily;  and my fingernails and lips have a slight bluish tinge. The blueness really becomes pronounced in cold weather.

The doctors at MUSC told my parents that I had Tricuspid Atresia, and that they should take me home and love me, for I was not long for this world. That didn’t sit well with my parents, who went back to my local Pediatrician and said “We need to try something,” even though they had no idea what “something” was. The Pediatrician gave them four places that could attempt a surgical repair: Houston, Texas; Mayo Clinic in Rochester, Minnesota; the University of Virgina; or Johns Hopkins Hospital in Baltimore, Maryland.

Houston and Mayo were eliminated because of the travel distance. The doc threw out Virgina, the medical school he had graduated from, because he felt they didn’t have enough experience with the operation. That really left one choice, and the doc said that he’d get the wheels in motion with the doctors at Hopkins.

That night all hell broke loose. I went into heart failure, with a pulse of 200 and a temperature of 103. It took them five days, but they were able to get things under control at my local community hospital. Meanwhile the doctors at Hopkins were taking the information from my local doctor over the phone and telling him they wanted to see me as soon as someone could get me there.

The folks hit the road, driving into one of the worst snowstorms to hit the East Coast in memory. Things were OK for a while, they finally stopped somewhere in Virgina to rest (this was long before Interstate 95 was completed). During the night, my mother got up to use the bathroom, glanced out the window… and saw it snowing. She woke up my father; we were in the car and moving within 15 minutes.

Every few miles Daddy would pull off the road long enough to wipe off the windshield with an old rag he had found in the trunk. The snow was getting deeper and more and more cars were stalled along the highway, and at one point my father thought about putting Momma and me on a train for Baltimore and catching up to us later. It never came to that, thankfully.

The Hopkins Admissions Office expected three families from out of town to arrive that day, we were the only ones who made it. The doctors at Johns Hopkins examined me not long after I arrived and Cardiologist Richard Rowe gave my parents the news. “He’s down to hours. We have to operate tonight.”

Dr Alex Haller, the Pediatric Cardiac Surgeon, should have done my operation. He was in Washington DC, trapped there because of the snow. Dr. Vincent Gott, Chief of Surgery, stepped in for him. The surgery was known as the Glenn Shunt – a variation of the operation, known as the Bidirectional Glenn Shunt, is performed every day in operating rooms around the world. But at that time it was new, so new that I was the 5th person to survive the operation.

And sometime over the next few days, my father picked up a copy of The Baltimore Sun and gasped. The snow had been so heavy, it reported, that train service into Baltimore had been halted. If he had put us on that train, I would have died.

When I went to Baltimore for the ACHA a few months ago, I had hoped that the schedule would allow me to go back to Hopkins and look around. Not that I expected to know anyone – doctors retire or move on, especially after 42 years. In fact, I don’t remember a single person. I vaguely remember a statue. I’d like to see Him again.

Ten and a half feet tall, standing on a podium, a statue of Christ greets visitors to Johns Hopkins Hospital. His name is Christus Consolator, or The Divine Healer.

I think we’d have a lot to talk about.

A Chance to Teach

October 10, 2008

One of the fun things that happens is when I have a chance to teach others about heart defects. Not just the Social Security Administration policy conference in Baltimore two weeks ago that I attended  on behalf of the Adult Congenital Heart Association (ACHA), but those times when the situation just presents itself. My friends who teach might very well call it a “teachable moment”, I just say it is a chance to show people how normal I – and many others with heart defects – are.

One such opportunity arose while I was returning from Baltimore. It occurred while I was clearing security through the Transportation Security Administration (TSA) checkpoint. When I reached the front of the line, I told the first screener that I had a pacemaker and requested a hand search. I was asked to step to the side and wait for another TSA agent to assist me.

In a moment the second agent ran my carry-on through the x-ray machine, then asked me to place my feet shoulder with apart and raise my arms to shoulder level. “Before we begin, is there any unusual items on or about your person that you feel you should tell me about?” (That’s a paraphrase; I don’t recall his exact words.)

“Yes,” I said. “My pacemaker is located on the left side of my abdomen, rather than in my shoulder.”

“I’ve never heard of that before,” he commented.

“It’s just the way my heart works,” I told him, warming to the occasion. “Usually a pacemaker is placed in the shoulder and the leads go down through a blood vessel called the Superior Vena Cava into the heart. (Click HERE for a diagram of the “usual” pacemaker placement) But I’ve had heart surgery and my blood vessels have been moved around. If you go down my Superior Vena Cava, you’ll wind up in my right lung.”

“Wow. You’re a little young to be having heart surgery, aren’t you?”

“I’ve had three; I was born with a heart problem. Had my first surgery right here in Baltimore.”

By that time my pat-down was finished and I was cleared to go. “Are you OK to fly?” the guard asked.

“Oh, yeah,” I said, gathering my stuff. “Most of us with heart defects do pretty well. We have to go slower or take it easy at times, but my life is pretty normal… almost boring, in fact.”

“Boring is good, we like boring around here,” he laughed. “You have a great flight.”

When I get a chance to talk about my heart, it’s not so much that I hope the other person remembers me. I hope that they remember that I’m basically “just a guy” – there’s nothing special about me. Sometimes I have to go slower or figure out a different way of doing things. Every few months I’ve got to go see my doctor. And I have a bucketful of pills that I have to take. But other than that, I blend in well.  You can’t find me in a crowd by looking for “the guy with the bum heart.” Even though I’m Cyanotic, you probably can’t tell it. You have to know what you are looking for and even then you could easily miss it. I could very easily be the young man sitting at the next table typing on his laptop.

I’m completely normal.

Anna saved us all

October 6, 2008

I’m leavin’ in a minivan,

should be back Wednesday night…

Wait a minute, that doesn’t rhyme. I guess my career as a songwriter isn’t going anywhere.

I’m packed for the trip to Atlanta, the laptop is also packed and the batteries are charged, so I should be able to post tomorrow night. Of course, you’ll get a full report once I return home. I’m feeling good and not expecting any problems, though my weight is up a little bit. So the doc may wave his finger in my face. He won’t have to crack the whip too hard; I don’t like for it to be up either. When you have heart failure, your weight creeping up might mean there is a problem brewing. And even if it doesn’t, your heart has to work harder. That’s not good.

First, here are a couple of links that you need to read: Researchers have discovered that a new type of drug can trigger a heart defect in unborn mice. The chemical in question is fairly common, so if you are planning to have children (or more children), clicking these links would be beneficial!

But let’s not get ahead of ourselves; the sky isn’t falling (yet). Taking the results of a research study using unborn mice and saying that we’ve found a way to prevent heart defects is a giant leap, but it is certainly worth continued study.

Is animal research necessary? I have to answer with a resounding “YES!” When he was designing the first congenital heart surgery, Vivien Thomas first had to study the effects of Tetralogy of Fallot (ToF) in a test subject, then figure out a way to correct the defect. Conducting experimental surgery on children with ToF was completely out of the question, so Thomas first had to surgically re-create the defect, then devise a corrective procedure to counter it.

His test subjects were dogs, most of them supplied by the Baltimore City Pound. Thomas is said to have performed heart surgery 200 times or more before Alfred Blalock attempted it on a child, so we must assume that most of those operations were failures. The dogs almost certainly perished.

Finally Thomas figured it out, and not only did the dog (a “mutt” named Anna) survive the procedure that “gave” her a defective heart, she made it through the operation that corrected it. Thomas then taught Blalock the operation (again, on a canine test subject) and on November 29, 1944, with Thomas standing behind him giving him guidence and advice, Blalock performed the first operation designed to relieve a Congenital Heart Defect. (Click this link for a “Who’s Who” in the operating room!) The operation eventually became known as the Blalock-Taussig Shunt. Anna became the mascot of the Johns Hopkins Surgical Lab and lived there until her death in 1957. She even had her portrait hung in the Hospital.

While animal research may be necessary; animal cruelty is not. My personal rule of thumb is “Would I do this to my family pet?” If the answer is no, then that test is not done. (And this standard can be subjective; my dog is not my pet, she is a member of the family. A neighbor who owns hunting dogs does not think of them as his pets, rather they are “tools”. Their main purpose is to do a job: Tracking deer.) So even going by my own rule, Thomas would have never invented cardiac surgery. Because I couldn’t do that to my dog.

So now, all I’ve done is muddied the water! While you are contemplating the fine line between animal research and animal cruelety, carry a couple of doggie biscuts in your pocket and be sure to toss one to a stray. Because if it wasn’t for a mutt named Anna, none of us with a heart defect would be here.

“You have a voice, use it.”

September 26, 2008

This is the text of my presentation at the Social Security Administration Policy Conference. It is not an exact transcription. When I have to talk about a subject, I like to write out a “speech” and then learn it – not word for word, but well enough that I know the main points without looking. Then when I speak, I have the written sheet with me and if I lose my place, I can just glance down long enough to remind myself of what I want to say.

After I had written this, I was still unsure of it. Amy Verstappen, the President of the Adult Congenital Heart Association (ACHA), went over it with me and suggested a few minor revisions so that our presentations would compliment each other. As I usually do, I wrote notes and corrections in the margins of my sheet. So this “text” is a combination of my original presentation and the revisions.

“Good Morning. My name is Steve Catoe, I’m a 42-year-old resident of South Carolina, and I was born with a heart defect known as Tricuspid Atresia. I had my first heart surgery at Johns Hopkins Hospital in 1967, when I was 5 months old. That operation was the original version of the Glenn Shunt; I was the fifth person at Hopkins to survive the procedure and the first to be physically active. I’ve had a total of three heart operations; the second when I was eleven years old and the third just after I turned twenty-one. The second one went perfectly, but I really had problems during my third one. Scar tissue tore as they opened my ribcage and I nearly bled to death. The surgeon had to forgo the procedure to save my life, and because of that scar tissue, another surgery is not an option for me. I’ve also had a pacemaker implanted and had a light stroke, which I have completely recovered from.

When people ask me to describe my heart defect, I first have to describe a normal heart: Imagine a circle split into 4 sections: Left and right halves, each with a top and bottom section. The top sections are your atriums, and the lower are called the ventricles. The right half of your heart takes the de-oxygenated blood coming from your body and sends it to the lungs, where it is refreshed with oxygen. The blood returns to the left side of your heart, where it is sent back out to your body to replenish your muscles and cells. In a perfect heart, the used blood and the refreshed blood never meet.

The Tricuspid Valve is the “door” between the Right Atrium and the Right Ventricle. With Tricuspid Atresia, the Tricuspid Valve doesn’t exist, so instead of having a perfectly shaped heart, my Right Ventricle is very underdeveloped. And since there is no path to my Right Ventricle, my blood has to shoot through some holes in the wall between the two atriums, mixing my fresh blood and my used blood. Those holes aren’t supposed to be there, but I need them to survive. This causes some of my used blood to be sent back out to the body without making the trip to my lungs. The body needs oxygen rich blood to function, and I don’t have that much to give it. This is a Pulse Oximeter, (Show the pulse oximeter) it looks like a clothespin with an electronic readout and it is painless. You place it on your finger and a few seconds later it tells you how much oxygen is in your blood. Normally it should read 95 percent or higher; mine is (at the moment it was 78%)

Low Blood Oxygen is called Cyanosis. The base word of Cyanosis is Cyan, which is the Greek word for “blue”, and Cyanosis steals my energy. I don’t play sports because I tire too easily, and I certainly don’t run after the bus I just missed. On most days I get a short nap in the afternoon to recharge my batteries. The easiest way to tell I’m Cyanotic is to look at my lips and my fingertips – both have a bluish tinge, especially in cold weather. One thing I intend to do while I’m in Baltimore is go shopping – Cyanosis make my feet cold all the time, and I’m looking for thick socks! South Carolina is a little too warm for the stores to stock those really nice thick socks, so they are hard to find back home!

I love baseball, but I rarely go to a game. It’s very hard for me to climb the bleachers. It’s just like walking up a long flight of steps. If I do go, once I find my seat I’m not leaving it until the game is over. I don’t visit the concession stands or go to the restroom, because that would mean that I have to walk up and down those steps again. And with people climbing the bleachers behind me, I have to walk at their pace, not mine. That’s usually faster than I want to travel. I’d much rather go to the South Carolina State Fair every year. The crowds are thick, but they are usually spread out a bit more and heading in different directions. So I’m at no one’s pace but my own.

A Congenital Heart Defect is a 24/7, 365 days a year disease. There isn’t a day that goes by that it does not affect me in some way. I have met the finest doctors and the kindest nurses because of it. But because of my heart, I can’t do a lot of the things I want to do, or I should do. Every week, I ask my dad if he needs a hand loading the groceries in the car. We both know that I can’t do it, but I ask. He’s getting up in years, and I should be doing it… and I would if I could.

We brought a binder with seventeen letters from Adult Congenital Heart Defect patients, and five letters from Adult Congenital Heart Defect doctors. They document their struggles with the Disability system and make a few suggestions on how to improve it. Don’t worry – no one tells you to do anything illegal, immoral, or fattening! And it is this amateur’s opinion that the system is geared more toward those with acquired heart disease – the heart problems that can develop with age – rather than those of us with congenital problems.

A Congenital Heart Defect requires highly specialized medical care, so I see my cardiologist about four times a year, and sometimes more often than that. I’ve seen doctors at Johns Hopkins, The University of Alabama at Birmingham, The Medical University of South Carolina, and right now I see excellent doctors at Emory University Hospital in Atlanta. I also have to take 11 different prescription medications, and some of these medicines have nasty side effects. One drug controls heart rhythm and does it very well, but it can also cause lung damage, eye damage, and thyroid damage.

In closing, I’d like to thank you for allowing me to speak to you today. Hopefully I’ve been able to give you a little glimpse into my life.”

Baltimore, Day Two — The Conference

September 24, 2008

The conference with the Social Security people went well today, I thought. There were a total of 33 attendees: Doctors, Social Security Administrators, other Social Security personnel ( they have a program that allows workers from the field offices to rotate to headquarters in DC; a fair number of attendees were from local offices) and a few advocates (Amy Verstappen, myself, and a gentleman from Mended Hearts)

I arrived home at 9:15 local time, after the flight from Baltimore to Charlotte and a two hour drive home. Finally, a seat that is not moving underneath me! So I am going to have to ask your patience… I’m VERY tired! I’ll report on the conference over the next few days.