I hope Santa was as generous to you as he was to us. We're now pretty much equipped for the surgery and recovery: loose sweats and sweaters, music, books, crosswords, PS3 games, and a new Ipod speaker system with a remote that I can bring to step-down in Cleveland.
We're in Kentucky, enjoying family and down time. Jenn's brother Patrick is newly engaged, and he and Libby are here for a few days. It's nice to be able to spend some time with her and get to know her - she's terrific (as expected, since Patrick is a man of discerning taste).
My friend Laurie could use your thoughts - she's with her cousin's wife, with whom she is very close, and who is sadly dying of cancer. They're doing their best to muddle through the holiday season. Follow them here, and post a comment if you're inclined.
Take care,
Michael
Saturday, December 26, 2009
Monday, December 21, 2009
No news is good news
Nothing seismic to report, but I felt like I should check in. (Is anyone out there?)
I'm wrapping up things at work for my leave. It's going to take 3 separate people to cover all my responsibilities at the office. I don't know what to make of that ... maybe I need to ask for a raise when I get back.
The 'Cats are headed to the Outback Bowl, and so are we! And those who know me know that any excuse to go to Tampa is a good one as long as there's time for dinner.
18 days to surgery, and I'm about as set as I can be. I'm loaded up with medically essential items and books and crosswords. Santa's elves tell me more is on the way, too. It became a little more real last week at the dentist's office, where they signed the required dental clearance; and when my leave was officially approved.
Jenn will be posting here in near-real-time during and immediately after the surgery. I'll have my laptop with me out there as well, so don't expect me to be offline for too long at all.
Happy holidays, everyone!
Take care,
Michael
I'm wrapping up things at work for my leave. It's going to take 3 separate people to cover all my responsibilities at the office. I don't know what to make of that ... maybe I need to ask for a raise when I get back.
The 'Cats are headed to the Outback Bowl, and so are we! And those who know me know that any excuse to go to Tampa is a good one as long as there's time for dinner.
18 days to surgery, and I'm about as set as I can be. I'm loaded up with medically essential items and books and crosswords. Santa's elves tell me more is on the way, too. It became a little more real last week at the dentist's office, where they signed the required dental clearance; and when my leave was officially approved.
Jenn will be posting here in near-real-time during and immediately after the surgery. I'll have my laptop with me out there as well, so don't expect me to be offline for too long at all.
Happy holidays, everyone!
Take care,
Michael
Tuesday, December 8, 2009
I (heart) NY
We spent this weekend in New York City, thanks to my employer, which saw fit to name me winner of a contest sponsored by Corporate Communications. They sprung for round-trip car service, one night hotel at the Renaissance at 57th and Lex, and theater tickets. I really do like my company!
Saturday was spent being active: walking the streets of NYC, riding the subways (read: lots of stairs), and touring the Guggenheim (read: long, spiral uphill path - it's an amazing piece of architecture). Then a nice dinner (pretzel-crusted crab cake and "lobster steak", anyone?), and the theater. Sunday morning, a little more of the same.
I find it interesting - and frustrating - that if I pace myself, I can make it through an activity-packed day or 2 like this, but that it definitely catches up with me. By noon Sunday I was beat, and I've been way sluggish since we got home, both physically and mentally.
It's all part of what Laurie calls the "new normal" - a typical touristy day takes a whole lot more out of me than from someone else.
As the surgery date approaches, days like Saturday remind me that I'm better off than a lot of people with this condition. Yay! - I can make it through a Big Apple weekend. But the term "make it" sets the bar a tad low, doesn't it? And let's not even get into the question of exercise, which I used to love, and now equally fear and loathe for the way it makes me feel. Here's hoping the surgery restores my quality of life to the point where I can walk around the city all day and not pay for it the rest of the week.
Take care,
Michael
Saturday was spent being active: walking the streets of NYC, riding the subways (read: lots of stairs), and touring the Guggenheim (read: long, spiral uphill path - it's an amazing piece of architecture). Then a nice dinner (pretzel-crusted crab cake and "lobster steak", anyone?), and the theater. Sunday morning, a little more of the same.
I find it interesting - and frustrating - that if I pace myself, I can make it through an activity-packed day or 2 like this, but that it definitely catches up with me. By noon Sunday I was beat, and I've been way sluggish since we got home, both physically and mentally.
It's all part of what Laurie calls the "new normal" - a typical touristy day takes a whole lot more out of me than from someone else.
As the surgery date approaches, days like Saturday remind me that I'm better off than a lot of people with this condition. Yay! - I can make it through a Big Apple weekend. But the term "make it" sets the bar a tad low, doesn't it? And let's not even get into the question of exercise, which I used to love, and now equally fear and loathe for the way it makes me feel. Here's hoping the surgery restores my quality of life to the point where I can walk around the city all day and not pay for it the rest of the week.
Take care,
Michael
Friday, November 6, 2009
No worries, mate
Saw my cardiologist today. The gray-outs are vasovagal - spells of low blood pressure caused by medication and immobility (both episodes occurred while forcibly sitting still - at a medical conference and on an airplane). Nothing to be concerned about, and he gave me some tips to avert it the next time I feel it come on.
Take care,
Michael
Take care,
Michael
Thursday, November 5, 2009
Off to the doctor
I've been traveling nonstop for the past 8 days. First Hawaii, then Orlando. I know it sounds like a vacation, but unfortunately I was in business clothes most of the time and shuttling from meeting to meeting.
Travel is always tough on me. Between the long hours (usually going nonstop every day from 7:00 a.m. sessions through business dinners), the movement through airports with luggage, the rich restaurant food, and the alcohol (not that I get drunk, but there are more occasions to have a beer or glass of wine with colleagues than at home), I often get more HCM symptoms while traveling and immediately afterward.
However, twice last week I had "gray-outs": episodes of near fainting that last 15-30 seconds. Both times I had the presence of mind to check my pulse at the wrist during the episode, and it was either weak or absent. It's most likely either low blood pressure or arrhythmia (I am assuming that the cause is cardiac and not something else).
I see my cardiologist tomorrow to get this checked out - will keep y'all posted.
Best,
Michael
Travel is always tough on me. Between the long hours (usually going nonstop every day from 7:00 a.m. sessions through business dinners), the movement through airports with luggage, the rich restaurant food, and the alcohol (not that I get drunk, but there are more occasions to have a beer or glass of wine with colleagues than at home), I often get more HCM symptoms while traveling and immediately afterward.
However, twice last week I had "gray-outs": episodes of near fainting that last 15-30 seconds. Both times I had the presence of mind to check my pulse at the wrist during the episode, and it was either weak or absent. It's most likely either low blood pressure or arrhythmia (I am assuming that the cause is cardiac and not something else).
I see my cardiologist tomorrow to get this checked out - will keep y'all posted.
Best,
Michael
Thursday, October 1, 2009
This isn't the T-1000 we're talking about here
(That's an obscure early 1990s pop culture reference).
Another frequently asked question: does the excised hypertrophied tissue grow back and cause problems again over time?
Answer: very, very rarely. Like less-than-1-in-1000-rarely. Naturally, I know of someone (a spouse of a colleague of my father - I think that makes her a second colleague once removed) who has had this happen. Why be mainstream?
(Still don't get the T-1000? It was the indestructible liquid-alloy villain in Terminator 2. It could come back from anything.)
Take care,
Michael
Another frequently asked question: does the excised hypertrophied tissue grow back and cause problems again over time?
Answer: very, very rarely. Like less-than-1-in-1000-rarely. Naturally, I know of someone (a spouse of a colleague of my father - I think that makes her a second colleague once removed) who has had this happen. Why be mainstream?
(Still don't get the T-1000? It was the indestructible liquid-alloy villain in Terminator 2. It could come back from anything.)
Take care,
Michael
Monday, September 28, 2009
Are your papers in order?
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
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 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
Friday, August 28, 2009
She's been there, done that
Three times, amazingly.
I had lunch today with my friend Laurie from fellowship. The conversation covered such pleasant mealtime topics as draining chest tubes, stool softeners, and Foley catheters. I couldn't help but notice that our waiter began to give us a great deal of space as the meal progressed.
Laurie's in a position to talk about this because she's had 3 open-heart surgeries and a monumentally difficult course. I won't summarize her story, because she's written about it extensively. Indeed, I've brazenly ripped off her blog, from the style to the title. Like me, she's a private person, but her story has helped me and I'm sure it's helped others. Keep her in your thoughts if you would. She's still fighting it.
Sorry to be a copycat, Laurie. And thanks.
Take care,
Michael
I had lunch today with my friend Laurie from fellowship. The conversation covered such pleasant mealtime topics as draining chest tubes, stool softeners, and Foley catheters. I couldn't help but notice that our waiter began to give us a great deal of space as the meal progressed.
Laurie's in a position to talk about this because she's had 3 open-heart surgeries and a monumentally difficult course. I won't summarize her story, because she's written about it extensively. Indeed, I've brazenly ripped off her blog, from the style to the title. Like me, she's a private person, but her story has helped me and I'm sure it's helped others. Keep her in your thoughts if you would. She's still fighting it.
Sorry to be a copycat, Laurie. And thanks.
Take care,
Michael
Saturday, August 22, 2009
The concept of control
I learned when Jenn was ill several years ago that it's impossible to control the flow of news about illness. This train has left the station, so to speak: despite seriously incomplete information (like does my surgeon of choice actually agree that I need surgery, and when should/can it be done), just about all my family and family friends know the situation.
This is fine. It's just that I've had to master the quick, succinct explanation sooner than I'd otherwise have, because it's always the first topic of conversation. It helps to know your subject inside and out (I do) and to be able to articulate it differently depending on your audience. For example, most of my non-medical-professional friends get the simple explanation that blood flow out of the heart is obstructed because of extra tissue growth, and as a result I get light-headed and short of breath with exercise. With others, like my cousin Dan (an internist) and my close colleague Jonathan (a developmental pediatrician) I can throw around terms like "echocardiographic evidence of a left ventricular outflow obstruction with associated gradient across the aortic valve, with increased severity on Valsava or exercise and associated hypotensive exercise response."
Everyone's been quite supportive, with plenty of well-meaning suggestions and advice - most redundant or incorrect - but supportive nonetheless. Having done my homework really helps in fielding questions and input from people. And ironically, having already been through serious illness in the family makes this go-round a lot easier when it comes to "controlling" the process. At some point I eventually learned that just because you can't control the news flow and the permanently changed interactions with family, that doesn't mean you've lost control of the choices you make to manage what you need to manage. It's about managing those choices when they come to you; everything else takes a backseat.
I'll get to the "elevator speech" itself in a future post (probably in the form of an FAQ), but if you're dying to know more about HCM, click here. Brigham and Women's Hospital in Boston is where I get my key care for HCM, and it's a designated HCM center of excellence. If you have the time, watch the videos from the 2008 HCM workshop at the bottom of the page. Dr. Carolyn Ho is my HCM cardiologist, and in the parlance of patient advocacy, she's a "rock star."
Take care,
Michael
This is fine. It's just that I've had to master the quick, succinct explanation sooner than I'd otherwise have, because it's always the first topic of conversation. It helps to know your subject inside and out (I do) and to be able to articulate it differently depending on your audience. For example, most of my non-medical-professional friends get the simple explanation that blood flow out of the heart is obstructed because of extra tissue growth, and as a result I get light-headed and short of breath with exercise. With others, like my cousin Dan (an internist) and my close colleague Jonathan (a developmental pediatrician) I can throw around terms like "echocardiographic evidence of a left ventricular outflow obstruction with associated gradient across the aortic valve, with increased severity on Valsava or exercise and associated hypotensive exercise response."
Everyone's been quite supportive, with plenty of well-meaning suggestions and advice - most redundant or incorrect - but supportive nonetheless. Having done my homework really helps in fielding questions and input from people. And ironically, having already been through serious illness in the family makes this go-round a lot easier when it comes to "controlling" the process. At some point I eventually learned that just because you can't control the news flow and the permanently changed interactions with family, that doesn't mean you've lost control of the choices you make to manage what you need to manage. It's about managing those choices when they come to you; everything else takes a backseat.
I'll get to the "elevator speech" itself in a future post (probably in the form of an FAQ), but if you're dying to know more about HCM, click here. Brigham and Women's Hospital in Boston is where I get my key care for HCM, and it's a designated HCM center of excellence. If you have the time, watch the videos from the 2008 HCM workshop at the bottom of the page. Dr. Carolyn Ho is my HCM cardiologist, and in the parlance of patient advocacy, she's a "rock star."
Take care,
Michael
Saturday, August 15, 2009
I didn't want to have to create a blog
But it's time.
I have HCM (hypertrophic cardiomyopathy). Despite almost a year of increased cardiac medications with little lasting improvement, I'm still sick. Open-heart surgery is in my near future, so this blog is designed to update friends and family on my progress.
I'll update periodically with information about HCM, the spiritual aspects of illness, and my journey to wellness.
Take care,
Michael
I have HCM (hypertrophic cardiomyopathy). Despite almost a year of increased cardiac medications with little lasting improvement, I'm still sick. Open-heart surgery is in my near future, so this blog is designed to update friends and family on my progress.
I'll update periodically with information about HCM, the spiritual aspects of illness, and my journey to wellness.
Take care,
Michael
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