Posts Tagged ‘Social Security’

Judge Tolliver Speaks

January 4, 2009

In the 1999 HBO movie The Jack Bull, John Goodman plays Judge Tolliver, one of the few honest judges in the area. Near the end of the movie he speaks with a fellow judge:

“I worry about you and me, Judge Wilkins. I swear to God I do, ’cause if this country gets ruined… it’ll be ruined by people like you and me. This is a territory of unimportant people; most folks around here can’t even write their name. You and me… we’re the important people. Trouble is, there’s not enough of us important people to go around – we’re spread thin, so sometimes, important things get ignored or don’t get said. Like… take care of the little feller; see to it that he don’t get ignored or cheated or insulted; make sure that his dignity does not get trampled on. Now you’re feelin’ bad right now, and by God, you ought to… seein’ as what just happened to a decent man. Myrl Redding did not fail the law…the law failed Myrl.”

(Special thanks to The HealthcareBS blog, The Happy Hospitalist, KevinMD, the Patient Empowerment blog, DrWes, the Street Watch: Notes of a Paramedic blog, and Insureblog for the content behind the links!)

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.

“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.”

“We’ve got something to say, and we ain’t leaving ’till we say it.”

September 25, 2008

Our participation at the Social Security Administration (SSA) Policy Conference went well. There were a total of 33 people there – physicians, Social Security employees (Both from the Washington Headquarters and various field offices around the country) advocates, and patients.

The Wheels of Government turn slowly. On April 16, 2008, the SSA published in the Federal Register their intention to consider revisions to the criteria they use to evaluate claims involving cardiovascular disorders in adults and children, and invited comments on their plans. After gathering information and data, they will decide if the regulations need changing. If they *do* decide that changes need to be made, they will then make the changes… and publish the changes in the Federal Register, inviting more comments. It can make you want to throw up your hands – or throw in the towel – but it is the way things are done. The policy makers want to make the policy as fair as possible: Open enough so that someone with a legitimate disability can qualify, yet tough enough that it’s not an easy way to live off the public dollar. They are also looking for guidance in determining “Unidirectional Listings”… that’s Government-speak for situations which would mean instant qualification for benefits.

Adult Congenital Heart Association (ACHA) President Amy Verstappen, Dr Karen Kuehl, Barry Meil and I were there to make sure the SSA representatives understood that Congenital Heart Defects are not “childhood diseases.” Adult Cardiologists and Pediatric Cardiologists are trained differently. Pediatric Cardiologists are trained to recognize and treat heart defects, while the large majority of adult cardiologists (90%+) are only trained to recognize and treat acquired heart diseases: the kinds of heart problems that develop through age or that could be accelerated through a bad diet or bad habits.

We were also armed with letters from seventeen concerned ACHA members and five Adult Congenital Heart Defect (ACHD) doctors. “There is no cure for having half a heart,” one of the letters reads. “The best way to explain how it feels is to have a person run around the house holding their breath. This is how I feel all the time.”

Dr. Karen Kuehl, the director of the Washington Adult Congenital Heart Center and a professor at George Washington University School of Medicine, reminded the policy makers that with some of the more severe defects, “it’s not a given that the heart has four chambers, two great arteries, and is located on the left side of the chest.” Dr. Kuehl argued that when an adult with a Congenital Heart Defect is evaluated for Disability, we do not need to be evaluated by a Cardiologist who may not understand what he or she is seeing. The evaluation should be done at a specialized center, using the Bethesda 32 guidelines. (The 32nd meeting of the American College of Cardiology, held in Bethesda, Maryland, issued new treatment guidelines for adults with Congenital Heart Defects. It is usually referred to as “Bethesda 32″.)

One of the issues that came up was the testing method being used. While both adults and children must have a blood oxygen level below a certain number to qualify, a child can be tested by a Pulse Oximeter, while an adult must undergo an Arterial Blood Gas. Anyone who has ever had a Blood Gas can tell you they aren’t fun! The blood is drawn from an artery in your wrist – which is fairly deep and usually requires a lot of “digging around” to find – and then it is placed in a plastic bag full of ice and rushed to the lab for immediate analysis before the sample deteriorates.  If it does deteriorate before testing… well, you just have to grin and bear it while another sample is drawn. I’m in full agreement, getting the standard changed to allow adults to submit a Pulse Oximeter reading would be a relief.

Amy Verstappen is an excellent speaker. She’s enthusiastic, energetic, and she knows her subject. (Amy has Congenitally Corrected Transposition of the Great Arteries (CC-TGA), so in this case she lives her subject matter.) Amy described a heart as a house: it has walls, doors and windows (valves), pipes (blood vessels) and an electrical system. Defective hearts have problems with the floorplan – hallways that lead nowhere, windows that are sealed shut, bad and leaky plumbing, and wiring so bad that occasionally the lights flicker. And like a real house, repairs can make the house livable, but it is still fundamentally flawed.

I do not know when the SSA will decide on the rule changes, if any; it may be a full calendar year before we know anything. Despite the name on the office door, the ACHA is working for both adults and children on this issue. ACHDers who qualify for Disability Benefits should receive them, without having to fight both the government and the medical field for an accurate evaluation. Children making the transition to adulthood need to be able to access doctors trained in their special needs when the time comes for their first adult evaluation. And a specialized health center is not a gateway to public funds – they can actually help reduce the level of disability by presenting treatment options.

Broke and Busted

September 22, 2008

I think the regular readers of Funky Heart know how cheerful and optimistic I am. But let me tell you right now, I am worried. And not just a little bit, either.

The recent mayhem in the stock market should make anyone worried. Whenever I was facing heart surgery, I was worried, of course, but not like this. Then, I (or my parents) understood how the heart worked, why mine didn’t work quite as good, and who was probably the best person to fix it. Stocks? Derivatives? Mortgage Bundling? I don’t have a clue. Nor do a lot of other people, and it looks like it turned around and bit them in the rear end.

But it didn’t just bite the hand that fed it, it took a chomp out of everyone. Now the economy is teetering, there is a plan to fix the system by throwing a whole lot of money at it, and there is no promise that it still won’t all come crashing down.

I’m really worried for those of us who need Disability or Social Security. The “rescue plan” will add 700 BILLION dollars to the budget deficit all at once, with probably more to come. And the total cost is expected to be almost one trillion dollars. So where is the money for our needy citizens supposed to come from? Run the numbers all you want, it just ain’t out there.

I’m on the Plan-D drug program. Without the reduction in cost, my pills would cost $147.97 a month… no that’s not a lot, but I don’t have a bottomless barrel of money. To me, a hundred and fifty bucks a month is a sizable chunk of change.  My greatest fear is what would happen if Plan D collapsed and then my savings dried up. I – and a lot of other folks like me – would be in a real mess. And I don’t have any answers, and that’s the worst part.

I’m not making a political issue out of this. As for how this happened, someone (or several someones) will be the odd man out and take the blame, but it’s not time to worry about that. What is done is done. There are times when you have to stop being a Republican, Democrat, Green, and just be an American. Everyone grab the rope and pull, because we’re in this together, and this is one of those times. The economy exploded; and everyone has to help clean it up. So maybe this trip to Baltimore is my way of (figuratively) grabbing a broom.

I’m stop now, I’m rambling.

Everything we do, we do it for you!

September 16, 2008

Remember that old Bryan Adams hit?

The Adult Congenital Heart Association (ACHA) will be sending a group to appear at next week’s Social Security Administration Policy Conference concerning “Cardiovascular Disorders in the Disability Programs.” The conference is going to be held in Baltimore, Maryland, and we’re on the schedule next Wednesday, September 24, 2008. The President of the ACHA will speak; so will one of the doctors on our Medical Advisory Board, someone from the Pediatric Cardiology Department of Johns Hopkins Hospital… and me. As a typical Congenital Heart Defect survivor, my role will be to explain what it is like to live with a heart defect.

And even though we are going to be approaching the issue from the perspective of the Adult Congenital patient, the session we’re participating in is titled “Cardiovascular Issues in Children and Congenital Heart Disease in Adults.” I’m very hopeful that some of the issues we bring forward will be incorporated into both the adult and children’s programs. For example, some of the current rules that determine disability status use measurements of the heart structure. For a normally developed heart that’s fine. But a CHD heart has underlying structural problems – the measurements won’t work for us.

I leave next Tuesday, flying out of Charlotte-Douglas Airport. I’m taking my laptop, but that doesn’t mean I’ll be able to post. If I miss a day or two, don’t worry: This Funky Heart is still having adventures!

Wish us luck!