Back to School

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

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

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

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

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

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

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

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

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

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

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

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

Someone had to teach them.

Grunt Work

I was in Philadelphia last April, helping out at the offices of the Adult Congenital Heart Association (ACHA) as they prepared for Lobby Day 2010.  On Lobby Day ACHA members – joined by members of the Children’s Heart Foundation and Mended Little Hearts – gathered in Washington, DC to visit the US Capitol. Our goal was not a sight-seeing trip, but to visit our legislators and convince them to fund Congenital Heart Defect provisions of the new healthcare law.

Knowing the ACHA office would be swamped with work (we had a total of four people in the office at that time) I volunteered to come to Philadelphia a few days early and help out any way I could. Unusually enough, “any way I could” turned out to be…

…. copying, sorting, and stapling.

Wow – that was a classy assignment there, Steve. They must not have needed that much help, after all!

Hardly. The ACHA staff was still setting up appointments with the legislators or their staff when I arrived. 48 hours until we left for DC; 72 hours to Lobby Day, and things hadn’t fallen into place yet. When we weren’t making appointments we were on the phone with our Advocacy Director working out final details. There was also a small crisis with the host hotel that wasn’t resolved until the last moment.

Making legislative appointments for 100+ attendees, smoothing things out with the hotel, working with the Advocacy Director to make sure things were just right… I don’t know how to do any of those things. So I was copying, and folding, and sorting, and stapling – so that the people who do know how to do those things didn’t have to worry about it. Or stop what they are doing to do it.

It’s “grunt work” – the repetitious, mindless type of job that no one wants to do. Everyone there could have done it, but they had skills that I don’t have, so I did the job. My best guess is that I handled 500+ separate sheets of paper. If you attended Lobby Day 2010, your informational sheets were assembled by me. (Don’t worry, I washed my hands!)

This is what advocacy for any worthwhile cause is – the willingness to do the little tasks, the grunt work, the behind the scenes activities that makes everything flow smoothly.

2010 Atlanta Heart Walk: The big kids!

Here’s a few of the Adults with Congenital Heart Defects at the 2010 Atlanta Heart Walk! All of us are patients at Emory University Hospital’s Adult Congenital Cardiology program! (Add one to the total – I’m holding the camera!)

And these are only a few – I filmed this not long after the event officially started and things began to pick up. I think that in total, 30 to 40 Adult CHDer’s were there! An entire group came storming in together (reminded me of the US Calvary coming to the rescue!) and I quickly lost count.

15,000 people

“Glad to be here, happy to be alive.” – End of the Line, The Traveling Wilburys

15,000 people have registered for the Atlanta Heart Walk! Wow!

And my original plan was to just take a quick flight down to Atlanta. I’m glad I didn’t – not with supicious packages being found on various aircraft today. For those of you who may not know, Atlanta is home of the busiest airport in the world. I can’t imagine how crazy it is out at the airport right now.

Dreams of a Funky Heart

Beginning to get things together for the trip to Atlanta. The weather is predicted to be a low of 39 Friday night (Brrr!) with a high of 70. (No, I still do not like cold weather!)

And yes, I am smart enough to realize this is an American Heart Association event, and I do understand that the Heart Association does not support Heart Defect causes very well. That’s not the point. Emory University Hospital is a major sponsor and has entered a team; my Adult Congenital Cardiology group is based at Emory and they have entered a “mini-team”! We’ll have bandannas to mark us as CHD survivors, parents, and healthcare professionals. We’ll be well represented!

And I signed up for a Survivor’s cap, so I’ll have another hat to add to my collection. That may not be a good thing, I already have more hats than I have heads to wear them on. That will just thrill Momma!

It’s not about the hat, or the walk, which group I belong to, or even who is sponsoring it. It’s really about going and participating and being counted. Because when I was a little fella, I grew up thinking that there were very, very few kids around with a broken heart. The American Heart Association (back in the days when they were the only resource for any information on the heart) published a book titled When your Child has a Heart Defect. They only listed TEN different defects – I was too young then to realize that they had grouped several of them together. All of the defects of the blood vessels were grouped together, and the structural defects were grouped into Right Atrium Defects and Right Ventricle Defects. Add to that fact that there was very little known about left-sided heart defects in the early 1970’s, and as a result not many defects were covered. So the way I understood it, there were only ten different defects… there couldn’t be that many people who had one.

That “logic” made sense to me back then. So maybe by going, some Cardiac Kid can see me, and all the other adults living with broken hearts, and realize there are more out there than he/she knew about. And perhaps they will realize that they can beat that broken heart.

A Funky Heart can dream, can’t he?

South Bound and Down!

To the tune of East Bound and Down by Jerry Reed:

 

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

Now keep your foot hard on the pedal, son never mind them brakes
Let it all hang out ’cause we’ve got a walk to make
We were summoned to Atlanta, where Heart Warriors will gather
And we’ll be there no matter what it takes!

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

Heart defects have too much power, it affects five kids an hour
And it ain’t gonna rest until we fail
So we gotta dodge it, we gotta duck it
We gotta do our part to stop it
So put those walking shoes on and give it hell!

South bound and down, loaded up and truckin’
We gonna do what they say can’t be done
We’ve got a long way to go and a short time to get there
We’re South bound, come and join the fun!

 

THE ATLANTA HEART WALK

8:00 AM October 30, 2010

Turner Field

Atlanta, Georgia

Traditions

One of my earliest memories is getting up very early in the morning and loading into the car for the long drive to see the doctors at Johns Hopkins. My parents were younger back then; with a little luck we could make the trip in one day. Just about sunrise we’d encounter a Stuckey’s Restaurant close to the North Carolina – Virgina state line. That was where we always stopped for breakfast, and the light blue roof became one of our landmarks. I looked forward to the restaurant, and the folks did too. Then one day…

…. one day, we came around the corner to find our favorite restaurant was now a pile of ashes! The only thing left, somehow, was the roof. It was pretty much intact, as if someone or something had gently removed it and set it aside before the restaurant burned, then returned it to its proper place.

Well, that’s not good. So we found breakfast somewhere else, and didn’t think anything about it until we got to Hopkins. There, we found out that my Cardiologist – arguably the best Cardiologist in the world – had left. Dr. Richard Rowe was now Head of Cardiology at a hospital in Canada.

No Stuckey’s, no doctor… these two events must be connected in some way, correct? And by the way, I am not superstitious!

I wear a pair of lucky socks whenever I have a doctor’s appointment. One day they’ll wear out, and I’ll rescue them from the trashcan. If I have to cut a small section out of the toe and stick it in my pocket, I will.

Why? At one appointment my doc looked at the EKG and his eyebrows shot up. That is never a good sign.

“You’ve developed an Atrial Fibrillation since your last appointment,” he said. Not good – A-Fib can lead to fainting or a stroke. And I was already taking Amiodarone to combat A-Fib, so apparently the Fibrillation had broken through.

“Double your Amiodarone and have an EKG test in two weeks. Have them fax us a copy. You may eventually have to have an ablation to try to knock that A-Fib down.”

Ablation – a catheter maneuvered inside of the heart with a probe on the end, designed to burn away the areas causing the out of sync heartbeats. Wonderful.

So two weeks passed, and I had the EKG done and faxed. Naturally, the EKG tech won’t even tell you the time of day, no matter how much you beg. But I got my answer that evening, when they called and told me I needed to come to the hospital for an appointment with the Electrophysiologist.

So the next week I was back, being examined by the specialist – wearing a new pair of socks. Didn’t bring that pair intentionally, just needed an extra pair and tossed them into my carry bag.

The doc hooked me up to a 12 lead EKG (the first one I had ever seen), listened with his stethoscope, and asked me several questions.

“So, how do you feel?”

“Worried about what you are going to find, but other than that, pretty good.”

“Tell me how you feel when you are having an episode.”

“Actually Doc, I can’t tell you. I don’t feel them.”

“Not at all?”

“No sir.”

He put the stethoscope back on my chest. “You are in A-Fib right now. Do you feel any different? Anything at all?”

“No sir,” I said.

He listened some more, and run another EKG. “I’m going to discuss this with your Cardiologist,” he said as he excused himself from the room.

In a few minutes he was back. “Since you don’t even feel it, and it doesn’t seem to be bothering you, I’m going to discontinue the Amiodarone. Get an EKG faxed to my office in two weeks. And if you feel light headed or more tired than usual, call me ASAP. But if it doesn’t bother you, I’m not going to medicate you for it.”

And with that we were out the door. The two-week EKG was acceptable and I felt fine, so all he told me to do was to discontinue the medication and come back for a routine checkup in one year. And ever since then, I walk into a doctor’s office wearing my lucky socks.

But I’m not superstitious…. what makes you think that? 🙂

Miracles

If only you believe in miracles, baby (like I do)
We’d get by

– Miracles, Jefferson Starship (1975)

I was concerned about traffic (traffic in downtown Charleston,  South Carolina can be a nightmare; almost every street is One Way) so I intentionally planned to arrive at the Palmetto Hearts Pediatric Cardiology Reunion early. A little too early, as I was the first CHDer on the scene… oops! But the wait wasn’t long, and before I knew it the entire museum was full of Cardiac Kids and Heart Parents. The oldest CHDer I met was a 16-year-old with HLHS (I never got your Facebook Friend request, Johnathan! Try it again, please!) but most of them were under 10 years old.

When you are that young, your heart is roughly the size of your fist. Imagine operating on an organ no bigger than an infant’s fist, cutting it open to find and repair a hole that isn’t supposed to be there. Imagine finding two blood vessels that are measured in millimeters – these blood vessels are connected to the tiny heart but they are in the wrong place, and it is your job to cut them, switch them, and sew them into the tiny hole where the other vessel was.

Imagine looking into the chest of an infant with part of his heart missing. It’s supposed to be the size of a walnut, but part of it is missing, so there isn’t even that much. As my grandma used to say, “There’s not enough space in there to change your mind.” No, there isn’t enough space to change your mind – but there is plenty of room to screw up, to shatter an already broken heart, to ruin a life and a family forever.

I didn’t talk to many of the children – If you were a child, which would you rather do: talk to the adult you don’t know or play with all the cool stuff in a Children’s Museum – but I did talk to a lot of their parents. I heard tales of living in the waiting room.

Staying by the bedside.

Waiting for a miracle.

That’s what I saw at the Pediatric Cardiology Reunion I attended Saturday night… miracles. A lot of them. Walking, talking, miracles.

What is a Health Registry?

Before Adventures of a Funky Heart! began I took part in Lobby Day 2007, sponsored by the Adult Congenital Heart Association (ACHA). This was my very first Congenital Heart Defect (CHD) Advocacy effort, traveling to Washington DC to meet with other adult CHD Survivors and to lobby Congress for the passage of an National Adult Congenital Heart Defect Registry. Now, three (almost four) years later, we have one – but it exists only on paper.

So ACHA members (along with a few other CHD Advocacy groups who have joined the fight) keep pounding the pavement in Washington, doing the grunt work needed to obtain funding for the Congenital Heart Futures Act and the registry it contains. But even though we’ve been doing this for nearly four years, the question is often asked: What exactly is a registry? And I’ve even gotten some strange comments, such as the person who insisted that they were not going to turn over their personal information, no matter what. So let’s try to clear up some misconceptions.

A Health Registry can best be described as an Excel spreadsheet: a database of facts and numbers. Fill the sheet with data, apply the correct sorting formulas, and you can learn a lot of information. Obviously, the more data you have, the bigger the pool of information you have to make the calculations and the more accurate they are. (My favorite college football team, for example, has won two games this year and lost none. That limited information points to a undefeated season and a National Championship. Even though I am pretty certain that won’t happen, that’s what the statistics predict.)

No one has to give any identifying information to be part of the registry. That would make it nearly impossible to keep track of anyone, especially women; ladies tend to take the last name of their husband when they marry. I’m not who I say I am either – most of you know me as Steve, but that’s not my legal name. I don’t sign an official document with Steve and it is not the name on my ID or my credit card. You could overreact and have a separate entry for every variation of a name, but that would give you too much information and dilute the results. It would be much easier to give everyone who is eligible to enter information into the registry a code number that will follow them for their lifetime.

The registry would be limited to adults at first. Why? it doesn’t sound fair, but we’ve been there and done that – what better group to use to get results right away. We’ve been through the childhood surgeries, the medications (some of which don’t exist anymore, because we proved they don’t work) and we’ve made it. Get the data from a couple of hundred adult CHD survivors into the registry, and you can begin to see some preliminary trends. And each addition makes the data more accurate.

So once we have this registry up and running, what can we learn? All kinds of useful information! The Centers for Disease Control (CDC) currently produces a work known as the Atlas of Heart Disease Hospitalizations Among Medicare Beneficiaries. This is a good example of a Health Registry, and the data is overwhelming. You can order a printed copy, download it as a .pdf file, and even view a series of interactive maps. (If you look up the South Carolina map, you’ll find that White men aged 65 or older with Heart Failure were hospitalized most often in the Northeastern part of the state – the border counties from Chesterfield County to Horry County. Data that detailed is priceless.)

What else could it tell us? Dr. Wes recently published results gleaned from an ICD Registry. Click the link and read what the registry revealed – the amount of information is staggering. Even though the plan is to gather information from adults with a heart defect at first, the registry is not exclusive and will benefit the entire CHD Community.

What you need in a hospital

In an earlier post I discussed what we need in a Congenital Heart Surgeon. Reader Heather let the cat out of the bag by mentioning that wasn’t all you needed… you need a good hospital, too.

How true, how true. As I have said many times before, the doctor you need does not practice in a town of 5,000 people. There aren’t enough patients in the community to allow him or her to sharpen their skills. Skill partially depends on volume – you do something often, you do it right, and you evaluate your results (and you keep evaluating them, constantly). That’s the only way to improve. You learn from someone who is experienced, then you do it yourself, knowing that anything less than 100% is unacceptable. As you gain skill, you learn how to do it better and faster.

That same fact applies to the hospital. You can have the best surgeon that ever put on a mask; but if the hospital you are in has very little experience with caring for post surgical patients, there could be problems. That applies to the type of surgery you are having, not to all surgeries. Caring for someone who just had heart bypass surgery and someone who just had congenital heart surgery is a lot different. Studies prove that the more experience a facility has, the better the outcome.

I love my community hospital. We have about 150 beds and I’m on a first name basis with a lot of the people there. I know the doctors and the nurses not only from the hospital, but I see them in the community. I saw one of my favorite nurses in the grocery store just last week. But that doesn’t mean I’m going to let them do heart surgery on me – they don’t have the skills. They are well-meaning people and I am sure they would do their best, but if I had surgery there, I’d probably come home in a box. We can’t have that, I’m claustrophobic!

A few months ago there was a plan being considered by England’s National Health Service to consolidate the number of Pediatric Heart Hospitals. A good number of people were understandably upset but the reasoning is logical: some of the units performed a relatively small number of surgeries. Consolidating the number of centers may make it inconvenient for some, but it will make the overall results better.

For us here in the States, that probably means a trip to a large city hospital. There are exceptions – Durham, North Carolina  (the home of Duke University Hospitals) is fairly small and Rochester, Minnesota (Home of the Mayo Clinic) is also a small city. But in most cases, we’re heading to The Big City – New York, Los Angeles, Nashville, Boston, Birmingham, Kansas City, Denver, Atlanta. These are only some of the destinations whenever the Heart Warriors I know head to the doctor. “Medical Tourism” is all the rage right now, but to us its old news. The average Heart Warrior is also a Road Warrior; we’ll go to where the best hospitals and doctors are.

And in the words of that great philosopher, Bruce Hornsby – That’s just the way it is.