Archive for the ‘ICD’ Category

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.

The Long Walk

June 16, 2010

“Improvise, adapt, and overcome.” – Heartbreak Ridge (1986)

Heart parents are understandably worried about their Cardiac Kid’s activity level. It’s a balancing act – we know that exercise and activity can help strengthen a weak heart, but how much is too much? And couldn’t something bad happen if he pushed him/herself too hard?

A 1997 research report concluded that parents worry about their children who have a Congenital Heart Defect (CHD). The study identified seven specific concerns but was unable to determine if these were specific to parents of CHD kids. The study was very limited – only eight parents participated – and drew no conclusions.

Sort of leaves you wondering. One of the major questions on my parents mind was my activity level, and what I could do physically. I think they were finally convinced by a Pediatrician who told them that he really had no idea what my limits were. “But I do know that when he gets tired, he’ll stop and rest,” he said. “I’ve seen thousands of children do that.” And…. he was right. No matter how much fun I was having, when I got tired, I’d quit and rest, and rejoin the game later. It all happened naturally, no one had to teach me how to do that.

One problem CHD kids can have is a lack of self-efficacy (in other words, we sometimes don’t believe we can accomplish a goal.) And honestly, sometimes we can’t – not in the normal, accepted way. This is where we have to convince ourselves that “there’s more than one way to skin a cat!” As a fellow Heart Warrior said in an interview published on this blog:

“…its about having the self-confidence to find another way when you reach a roadblock.”

And we all get a case of  “I don’t want to!” at one time or another. I know that walking is good for me, but I also know that walking in cold weather is going to cause my joints to hurt. I’ve got on thermals, coats, gloves, a scarf, and a heavy sweater; I’ve tried hand warmers and foot warmers (both thermal and electric) but it still happens – probably because of my cyanosis and/or my bloodthinners. My hands are going to ache; the joints of my fingers are going to hurt so much that they feel like dead weights until I get back inside and warm them. So in the winter months you can’t pry me out of the house and I wonder how the CHDers I know who live in cold areas survive.

This report outlines some exercise and physical activity guidelines for CHDers.  Even though those of us with a univentricular heart (a cool phrase for someone with one working ventricle, like my Tricuspid Atresia) have a reduced exercise tolerance, physical activity can help us, too. We just need to make sure that we don’t overdo it. And recent studies show that physical activity usually doesn’t trigger an ICD shock.

So the bottom line, Mom and Dad, is don’t become Helicopter parents and “hover” all the time. And for us CHDers, it’s probably OK to get out and exercise or play. Naturally, check with your doctor first.

And for me, to get up the enthusiasm to get out in the cold!




New ICD moves leads, reduces chance of infection

May 2, 2010

Implantable Cardioverter Defibrillators (ICDs) are cool. For people who are prone to tachycardia, V-Fib, or other rhythm disorders, it could be a lifesaver. An ICD is like having your own medical team with you all the time. The moment there is trouble they get out the paddles, shout “CLEAR!” and give you a life saving jolt. And very few people have to know you even have one.

But in most cases, the patient population for new ICD are older citizens. This 2007 clinical trial specifically tested the efficiency of pacemakers in patients that were 75 years old or older. But what about us younger folks who need an ICD? They usually aren’t recommended for the youngsters.

One of the potential problems are the ICD leads. The wires that run from the ICD have to go into the heart and connect inside of the heart muscle to deliver the shock if one is needed. Leads have to be strong, but flexible. You can have one or the other, but usually not both. At the Broken Hearts of the Big Bend Regional Forum on Congenital Heart Defects I attended in February, electrophysiologist Dr. Randy Bryant  said that most children who have either a pacemaker or an ICD needed to have their leads replaced. One of the more common reasons for the replacement is the Belly Flop into the swimming pool. Leads seem to have difficulty dealing with that!

And every time you change a lead, you run the risk of giving an infection a chance to get inside the body. The odds are low, but toss the dice enough times, and you’ll finally roll snake eyes.

And leads can just, for lack of a better word, wear down. They have to be connected to a certain spot inside of a muscle that is constantly in motion, with an owner who could turn, twist, or bend in any conceivable direction. As Dr. Martin Burke, Director of the Heart Rhythm Center at the University of Chicago Medical Center puts it:

“It’s a 98.6 degree, dynamic environment that pumps like a piston 60 to 100 times a minute; it’s a miracle they last 15-20 years in my mind.”

Burke has been part of a team that has tried to rethink the Defibrillator, take a good idea and make it even better. It looks as if they may be onto something: An Implantable Cardioverter Defibrillator (ICD) with leads that are not in the heart, but rather just below the skin. Putting the leads just below the skin (they don’t even go beyond the breastbone) means that the ICD has to deliver a shock that is two and a half times more powerful that the average ICD. But the computer that controls the ICD has also been improved. It can better detect heart rhythms that are unusual but not dangerous, and deliver fewer shocks.

The new Defibrillator (which is known as the S-ICD) has just entered clinical trials, so you won’t be able to go to your doctor and demand one. But in the future, hopefully it will become a common tool for CHDers and other heart patients.