Posts Tagged ‘Heart Warriors’

What is a Health Registry?

September 19, 2010

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.

Special People, Special Moments

December 17, 2009

Check out the newest edition of Patients for a Moment, the blog carnival by and about the folks who aren’t carrying a stethoscope!

As soon as Christmas is over, I’ll turn my full attention to preparing for the Regional Congenital Heart Defect (CHD) Forum sponsored by Broken Hearts of the Big Bend.  The forum is going to be held in Tallahassee, Florida, on February 13, 2010. I’ll get to meet with a group of Cardiac Kids, some Heart Warriors, and most importantly, a lot of Heart Moms and Heart Dads.

Heart Moms and Heart Dads are a special breed of people. Things were going wonderfully, then suddenly a doctor took them aside and said “We think there might be a problem with your child’s heart…” and everything changed. The ground began to crumble under their feet, and all their dreams suddenly became a nightmare. Something is wrong with our baby, and for all anyone knows, it just… happened. Nothing we could have done to stop it or prevent it.

Some families crack under the pressure. Now you have a sick child and a broken family; a double tragedy. And in some families…

… in some families, the parents-to-be come closer together. Mom’s maternal instinct kicks into warp drive; she’s going to protect her child with every weapon she has. She’ll ask questions until the doctor screams for mercy and dispute any advice that doesn’t seem right. The quiet, unassuming woman you married will get in the face of anyone who doesn’t seem to be acting in her child’s best interest. Heart Moms develop iron wills – they will go to the ends of the earth for their child, and if that’s not far enough they’ll tie a rope and drag the earth with them.

A dad’s job is to protect and to care for his family. A Heart Dad realizes that through no fault of his own, he has failed that task. He also realizes that he can’t fix this problem – yes, that is part of his job, but for most of us, precision cardiac surgery is not something we know how to do.

So a Heart Dad accepts the fact that he has to find someone else to do his job for him – and men (especially fathers) don’t do that very well. But Heart Dads put their pride on hold and dedicate themselves to one task: getting their child safely to the help that they need. Maybe it’s not such a “manly” thing to do to ask for help, but they do it. And then our couple learns all about how time moves slowly in a waiting room, how the battle is fought day by day (and sometimes hour by hour) and that sometimes the good guys don’t win.

I love people like that, and I love meeting them. Because as hard as they’ve fought, there is still a seed of doubt in their minds: Will my child make it? What kind of life is he going to have? What’s going to happen to them when I am gone? Most of the Heart Parents I have met are young – in their 30′s, at most. They’re still learning, and things may be OK right now, but they’ll be fighting this battle all their lives.

I don’t claim to be an “inspirational speaker” and I am learning right along with everyone else at the CHD conferences I’ve attended. But maybe I can say something – or just introduce myself as a 43-year-old CHD survivor – and it will all fall into place. With good medical care and a little good fortune, your child can grow up and live a normal life.

I was sitting in my pediatric cardiologist’s office – trying to fit into one of those little chairs – when the man sitting next to me said “So… I guess you’re just here to pick up a prescription for your child?” Without really thinking about it I said “No, I’m the patient; just waiting for my appointment.” And I literally saw his face change as all his dreams about his child were reborn.

Moments like that are awesome.

Fight Harder

November 27, 2009

The CHD Blog Carnival planned for November 30 has been canceled – there were only three submissions. And  I sent at least 15 personal e-mails to various CHDers and/or their parents, inviting them to participate.

If you want to beat Congenital Heart Defects, you’ve got to put some major research money into the research projects currently being worked on. You also have to be willing to fund future research based on the results of what we learn. There are two ways to do this:

1) Find a CHD research project that you support and present them with a check of at least $100,000; or

2) Raise awareness about heart defects in the eyes of the general public and keep highlighting the cause until projects are funded through private or federal grants.

I certainly don’t see myself writing any big checks anytime soon, and I bet you don’t either. So we have to talk about heart defects. Get noticed. Draw people to our side. 1 in every 125 live births are affected by a heart defect. Isn’t that enough reason to fight?

It’s like climbing a mountain – it’s not going to be easy. When people hear “CHD” they think Coronary Heart Disease, which is obviously not the same thing. But worthwhile goals are never easy.

Lately, I’ve seen a good deal of pessimism in the CHD world. “We lose two children an hour to Congenital Heart Defects,” a blog post I read stated. Where are those numbers coming from, because two CHD deaths per hour in the United States means CHD has a 40% mortality rate. The worst Polio epidemic on record (1952) had a mortality rate of 18.4% And if you are old enough, you remember how much of a panic Polio caused.

But why emphasize the number of deaths, anyway? We’re winning. Why not emphasize the fact that 96% of children who need Congenital Cardiac Surgery survive? The vast majority of those children grow to full adulthood, too. And Adults with CHD are living longer, better lives. Last February Amy Verstappen, President of the Adult Congenital Heart Association (ACHA), noted that the oldest ACHA member had recently passed away.

She was in her seventies. So why not talk about our wins instead of our losses?

And surgery isn’t going to be the ultimate answer anymore – yes there will be a need for it, but broken hearts will soon be fixed with organic patches, gene therapy, stem cells, and prenatal treatments. Some CHDs will slip through undetected – defects in the heart’s electrical system can be very hard to find – but doctors will figure those out, also.

It’s not time to moan and groan and give up the fight,  but to push harder.  Red and Blue Day is this Sunday, that’s a good place to start.

On the Trail

May 19, 2009

The starting lineup for the 2009 Bolder Boulder is set – nine adults who have had  sixteen major heart operations will be participating. We’ve got nothing to prove: I jokingly say that when I wake up in the morning, I stretch my feet forward and look at my toes. If there is no toe tag… I’m still winning!

I’ve talked a lot about the race, but I’m having a hard time putting into words exactly what this means to me. Certainly it’s going to be a lot of fun – I met a some of the Denver area Adult Congenital Heart Association (ACHA) members while I was in Philadelphia and in Washington, DC; they are good people. And we all have a common story, we’ve all Walked the Difficult Path. When I talk about my heart with these people, they automatically understand. If the air is thinner than I’m ready to deal with and I need to take a break, I don’t have to feel guilty about begging off for a little while. I won’t feel left out, because every one of us has Been There and Done That at one time or another.

I’ve run into several “technical difficulties” getting organized for the trip. My Cardiologist prescribed a little extra Oxygen for me while I was out there, and for a while I thought I was going to have to ship a 60 pound Oxygen Concentrator cross country! The local group was right there with offers to handle things on that end. (I’ve been able to arrange to have it delivered to the hotel, so no hearts or backs were damaged in the making of this trip!) A few weeks ago when my hernia was really giving me a fit, I emailed the local ACHA organizer that I might not be able to come after all. Almost immediately I was told that if I could get there, I’d be loaned a wheelchair and an assistant to push me around. That’s going above and beyond! Thankfully the hernia is quiet and if all goes well, I’ll be able to be on my own two feet. But the offer was greatly appreciated, and as far as I know it still stands. I’m sure I’ve been a pain in the rear end trying to work out the details, but the Denver crew has been patient, and I am so thankful for them.

Like the team that is actually on the course, I’m fortunate enough to be in pretty good health. Other adults with heart defects are not. Heart Moms and Heart Dads look at their Cardiac Kids and wonder what the future will bring. A lot of things have changed since I had my surgeries, I’m hopeful that they will have an easier journey than my parents did. And perhaps one day, with more knowledge and funding, no one will have to walk this path at all.

And that is why we’ll be out there. Because every heart deserves to live a lifetime.

Until we speak again;


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