Archive for the ‘Dr. Wes’ Category

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.

When the light fades

August 4, 2010

With new life extending technology comes new ethical questions – often not can you take advantage of it, but should you? A recent report by the Heart Rhythm Society offered detailed guidelines concerning shutting down a pacemaker or Implantable Cardioverter Defibrillators (ICDs) near the end of life. The purpose of the document is to outline the rights and responsibilities that patients, family, and caregivers have. Fully 10% of doctors may feel that deactivation of a pacemaker - even at the request of the patient or their family – is wrong.  (The percentage that see ICD shutdown as wrong is 1%, as an ICD can be changed to “pacemaker only mode”.)

A recent Mayo Clinic study found that withdrawing a Left Ventricle Assistance Device (LVAD) was ethical, if the patient (or their surrogate) recognized the eventual outcome of such an act.  While a heart may be strong enough to continue beating for a while without a pacemaker, shutting down a LVAD is an extremely serious step. The LVAD is a pump, and the heart is a pump; the only reason to hook a pump to a pump is because the first pump can no longer do its job. Death could come fairly quickly after LVAD shutdown. The writers of the Mayo Clinic study contend that turning off a LVAD (or refusing it altogether) is not physician assisted suicide or euthanasia.

But why would someone want to deactivate a pacemaker or LVAD? There are many illnesses that steal the body while leaving the Circulatory System functional. A stroke or Alzheimer’s can leave you incapacitated while your heart beats on. Or perhaps you have reached the end of your life, and your heart just can’t go any further, so it shuts down…. only to be zapped back to life by an ICD. Blogger Dr. John M. notes that things change, life changes – and occasionally he has to tell a patient “Sir, an ICD will no longer help you.” And Dr. Wes is there as a gentleman plays the last few notes of his life’s song.

80% of all Americans will probably die of an incurable chronic illness. Most of those people want to die at home, with as much dignity as possible and as little pain as possible. I plan to fight for as long as I can stand – Rage, rage, against the dying of the light! But in the back of every CHDer’s mind is the knowledge that one day our hearts will give out… and it will probably happen slowly.

Our light will fade away rather than being snuffed out.

Zapped!

March 11, 2010

Dr. Wes recently reported on an article he found in The New York Times about one of the first uses of a “Defibrillator” to restart a human heart. Both the Times and Dr. Wes place the word Defibrillator in quotes because… well, things didn’t turn out so great.

The year was 1948 and a gentleman named William McCullic was having an operation in Trenton, New Jersey. Things went horribly wrong when, in the midst of the operation, Mr. McCullic experienced Ventricular Fibrillation, sometimes called V-Fib.

Uncorrected V-Fib can be fatal in less than five minutes. The surgeon took over, keeping the heart going by squeezing it with his hand. Meanwhile, operating room staff connected two copper electrodes to an electric lamp, plugged it in, and then touched the leads to the injured heart.

ZAP!

Somehow it worked! The heart regained a normal rhythm! The surgeon decided that was enough tempting fate for one day and closed the incision… and poor Mr. McCullic died four hours later.

Needless to say, the surgeon “requested that his name be withheld from publication”. I can’t blame him. I probably would even admit to being in the same state when that disaster took place!

This is why I love Dr. Wes’ blog, reason #186: We both seem to love the history of Cardiology!


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