Jenn and I met with an attorney today to begin drafting the important stuff: wills, health care power-of-attorneys, and living wills.
If you haven't done this for yourself yet, stop reading and call an attorney. It took a health issue for us to do it. Fortunately, it's just an issue so far, not a crisis. Don't wait until it's too late. Make your choices now so that they're legally enforceable.
And it wasn't even that expensive. We've spent more on dinner and drinks.
Take care,
Michael
Monday, September 28, 2009
Monday, September 14, 2009
FAQ, part 2
What kind of surgery do they do for HCM?
It's called a myectomy. In short, it's open-heart surgery where the cardiac surgeon accesses the inside of the heart from the top (through the aortic valve) and shaves off some of the overgrown tissue.
Sounds extreme. What did you mention before - something about an "alcohol ablation"?
Yes, a septal alcohol ablation. This is done in the catheterization lab. The interventional cardiologist locates the precise area of the individual coronary artery that supplies the overgrown septum and injects a small amount of alcohol. This kills the area of the overgrown septum (it induces a small, controlled heart attack), which over time should shrink the area and reduce or eliminate the obstruction.
Advantages: Quicker procedure and much shorter recovery time.
Disadvantages: Greater likelihood of needing a pacemaker, questions about long-term efficacy.
Surgery is greatly preferred for young, active patients. In one of my favorite books, Walk on Water, a cardiac surgeon beautifully summarized the dilemma of interventional cardiology versus cardiac surgery: "Interventional cardiology is beautiful on the outside and ugly on the inside. Surgery is ugly on the outside and beautiful on the inside." The bottom line is that the surgery is much more precise and, I believe, likely to fix the problem the best.
Where/when are you having the surgery?
At the Cleveland Clinic, by Dr. Nicholas Smedira, Jan. 7, 2010. There's no better place on the planet for heart care, and for the myectomy procedure specifically. Read up on the Clinic's outcomes - specifically, page 46 of the brochure.
It would help if you lost some weight.
Strictly speaking, that isn't a question.
Sorry. Would you feel better if you lost some weight?
Wouldn't we all?
The HCM isn't caused by my weight, and it won't be reversed if I did lose weight (though my exercise tolerance could be improved). I'm doing what I can to eat less and move more (the only true way to weight loss). It's difficult right now because I can't sustain any elevation of heart rate, and anaerobic exercise (weights/strength training) truly makes me dizzy and light-headed. Though I don't intend myectomy to be a weight-loss surgery per se, I do expect to return to my highly active lifestyle once recovered - including regular gym workouts and walking a golf course. Neither of these are things I can do right now. Give me back my activity and my diet constructed to support it, and I expect that my weight will drop.
How long is the recovery?
6 weeks before I can drive; I'm anticipating at least 8 weeks off work, maybe a little more, depending on my stamina. I expect residual pain and issues for 6 months to a year after the surgery. I've read a lot of myectomy stories, and the one thing I've consistently taken from them is that everyone's experience is different and everyone heals at their own pace, with their own issues.
That covers the range of questions I get most frequently. Feel free to post a question using the comments tool and I'll be happy to answer here.
Take care,
Michael
It's called a myectomy. In short, it's open-heart surgery where the cardiac surgeon accesses the inside of the heart from the top (through the aortic valve) and shaves off some of the overgrown tissue.
Sounds extreme. What did you mention before - something about an "alcohol ablation"?
Yes, a septal alcohol ablation. This is done in the catheterization lab. The interventional cardiologist locates the precise area of the individual coronary artery that supplies the overgrown septum and injects a small amount of alcohol. This kills the area of the overgrown septum (it induces a small, controlled heart attack), which over time should shrink the area and reduce or eliminate the obstruction.
Advantages: Quicker procedure and much shorter recovery time.
Disadvantages: Greater likelihood of needing a pacemaker, questions about long-term efficacy.
Surgery is greatly preferred for young, active patients. In one of my favorite books, Walk on Water, a cardiac surgeon beautifully summarized the dilemma of interventional cardiology versus cardiac surgery: "Interventional cardiology is beautiful on the outside and ugly on the inside. Surgery is ugly on the outside and beautiful on the inside." The bottom line is that the surgery is much more precise and, I believe, likely to fix the problem the best.
Where/when are you having the surgery?
At the Cleveland Clinic, by Dr. Nicholas Smedira, Jan. 7, 2010. There's no better place on the planet for heart care, and for the myectomy procedure specifically. Read up on the Clinic's outcomes - specifically, page 46 of the brochure.
It would help if you lost some weight.
Strictly speaking, that isn't a question.
Sorry. Would you feel better if you lost some weight?
Wouldn't we all?
The HCM isn't caused by my weight, and it won't be reversed if I did lose weight (though my exercise tolerance could be improved). I'm doing what I can to eat less and move more (the only true way to weight loss). It's difficult right now because I can't sustain any elevation of heart rate, and anaerobic exercise (weights/strength training) truly makes me dizzy and light-headed. Though I don't intend myectomy to be a weight-loss surgery per se, I do expect to return to my highly active lifestyle once recovered - including regular gym workouts and walking a golf course. Neither of these are things I can do right now. Give me back my activity and my diet constructed to support it, and I expect that my weight will drop.
How long is the recovery?
6 weeks before I can drive; I'm anticipating at least 8 weeks off work, maybe a little more, depending on my stamina. I expect residual pain and issues for 6 months to a year after the surgery. I've read a lot of myectomy stories, and the one thing I've consistently taken from them is that everyone's experience is different and everyone heals at their own pace, with their own issues.
That covers the range of questions I get most frequently. Feel free to post a question using the comments tool and I'll be happy to answer here.
Take care,
Michael
Thursday, September 10, 2009
FAQ, part 1
What is HCM?
Hypertrophic cardiomyopathy. "Hypertrophic" simply means extra overgrowth of tissue. "Cardiomyopathy" means a disease of the heart muscle itself (not necessarily of the arteries, which is more common and is generally the first thing one thinks of upon hearing 'heart disease.')
What's wrong with your heart specifically?
To get at this, it's helpful to thoroughly understand the anatomy of a healthy heart. Click on this diagram, and let's clarify a few items. See the big pink areas in the center? They're the heart's chambers - they fill and unfill with blood. The beige line running from the center downward to the right is the septum, which is the muscle tissue that separates the left ventricle from the right ventricle. The beige ring around the outside of the entire heart is the muscular wall. So beige = muscle, pink = chamber.
Now, imagine that the top portion of the septum is about twice as wide as it should be, extending to the right, almost all the way to the mitral valve. That's my heart, and with every beat, the mitral valve comes into contact with the septum (they shouldn't be anywhere near each other). In a normal heart, the blood flows upward out of the left ventricle. In my heart, the blood has nowhere to go - it's obstructed by the contact between the mitral valve and the septum. So pressure builds up in the left ventricle, as well as further back in the system - it's like a garden hose that's kinked. That pressure build-up (called the gradient) varies continuously - that's why some days are better than others.
What causes the pressure to vary?
Dehydration, fatigue, eating (digestion), heat (especially with high humidity) and exercise all make the gradient worse.
What happens then?
In highly scientific terms: I feel really crummy. It becomes harder to breathe (and my breathing rate goes up), there's a sensation of chest pressure, and I may feel lightheaded or dizzy.
What can the doctors do about it?
First, medications to try and reduce the gradient. I'm on a bunch at some high doses. Second, open-heart surgery to remove the extra muscle in the septum. That's where I'm headed.
Can't they put in a stent?
Stents are for arteries that have become obstructed. If you go back to the diagram, you'll see that the problem isn't with the arteries (which lie on the surface of the heart), but rather inside the heart itself. Surgery is the only way to get there (well, except for septal alcohol ablation, which is another topic).
More Q&A soon.
Take care,
Michael
Hypertrophic cardiomyopathy. "Hypertrophic" simply means extra overgrowth of tissue. "Cardiomyopathy" means a disease of the heart muscle itself (not necessarily of the arteries, which is more common and is generally the first thing one thinks of upon hearing 'heart disease.')
What's wrong with your heart specifically?
To get at this, it's helpful to thoroughly understand the anatomy of a healthy heart. Click on this diagram, and let's clarify a few items. See the big pink areas in the center? They're the heart's chambers - they fill and unfill with blood. The beige line running from the center downward to the right is the septum, which is the muscle tissue that separates the left ventricle from the right ventricle. The beige ring around the outside of the entire heart is the muscular wall. So beige = muscle, pink = chamber.
Now, imagine that the top portion of the septum is about twice as wide as it should be, extending to the right, almost all the way to the mitral valve. That's my heart, and with every beat, the mitral valve comes into contact with the septum (they shouldn't be anywhere near each other). In a normal heart, the blood flows upward out of the left ventricle. In my heart, the blood has nowhere to go - it's obstructed by the contact between the mitral valve and the septum. So pressure builds up in the left ventricle, as well as further back in the system - it's like a garden hose that's kinked. That pressure build-up (called the gradient) varies continuously - that's why some days are better than others.
What causes the pressure to vary?
Dehydration, fatigue, eating (digestion), heat (especially with high humidity) and exercise all make the gradient worse.
What happens then?
In highly scientific terms: I feel really crummy. It becomes harder to breathe (and my breathing rate goes up), there's a sensation of chest pressure, and I may feel lightheaded or dizzy.
What can the doctors do about it?
First, medications to try and reduce the gradient. I'm on a bunch at some high doses. Second, open-heart surgery to remove the extra muscle in the septum. That's where I'm headed.
Can't they put in a stent?
Stents are for arteries that have become obstructed. If you go back to the diagram, you'll see that the problem isn't with the arteries (which lie on the surface of the heart), but rather inside the heart itself. Surgery is the only way to get there (well, except for septal alcohol ablation, which is another topic).
More Q&A soon.
Take care,
Michael
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