Mortality
I don't know what to say sometimes. I'm in the doctor's office and they ask if I've been having any "symptoms" - shortness of breath, chest pains, etc. I don't know that I ever have, but that answer seems to perplex them...all of them. I don't know why.
The problem is is that I've got idiopathic dilated cardiomyopathy. In short, it is heart failure - heart failure that the doctors can't seem to figure out the cause. One doctor told me that it's idiopathic because sometimes doctors are idiots when they can't figure out why. Nice way of explaining it to me, but still just as difficult to take. Trust me, it's not easy to hear that you've got a "condition" that you didn't know you have; a condition that may get better, may stay the same, and may get worse - and having about a 1/3 chance for any of them. On the bright side, I have a 66% chance of staying the way it is or getting better - those odds are sounding better and better every day.
Just a little background - I woke up about 2AM in early November with a pain under my armpit and my heart was racing. I had no idea what was going on, but I did remember that I was carrying a box full of heavy books (read: law school books) and it slipped but I caught it. Was the pain I was feeling just a pulled muscle or a problem with my heart? My father has had a heart attack, and I wasn't sure if this was the wonderful world of genetics getting the better of me. Sylwia took me to the ER to get me checked out. Before we even got to the hospital, I was feeling better, and it was feeling more and more like a pulled muscle.
As it turns out, it's good that I went ahead and went to the hospital. They took an EKG and noticed that my heart wasn't beating in the proper sinus rhythm. I have a left bundle branch block - that is, the main wiring to the heart splits in half with one half carrying the electrical signals for one half the heart to tell that side to beat and the other half carrying the electrical signals for the other half of the heart to tell that side to beat. Unfortunately, the wiring controlling the left side of my heart is a bit slow in conducting the signal, so my left side is beating a bit behind, or a bit too slow. (note: this is just my understanding that I've gathered from the various doctors; if this isn't what these things mean, keep in mind that I'm a lawyer, not a medical doctor!) Again, they don't know what's causing this in me - it could be any number of things, including genetics or a congenital defect (from birth). The ER told me to follow up with a cardiologist to get this problem checked out.
Well, being a bit scared to go and hear bad news with only a couple weeks before my wife and I were going on a cruise to get re-married, I put off the follow-up until the end of December. I found a cardiologist on my insurance website - bad choice - and scheduled an appointment. At the appointment, he scheduled me for an echocardiogram (like an ultrasound of the heart) and the treadmill/stress test. I went in on January 7 for the echo and everything has been different ever since.
Before I even got back to my office from getting the echo done, I had a voicemail from the doctor's office telling me that they want me to come in first thing the next morning - and that they cancelled the stress test. Upon hearing that, my stomach sank. I knew there was no way they would call that fast and cancel other tests if it was good news...and the urgency in their voicemail was very disturbing. I tried to call and ask what was going on, but all they said was that they would tell me what was going on the next morning. Alot of good that did...by the time I got home, I had another voicemail indicating that I was scheduled for a procedure at the nearest hospital on Monday morning (this was Thursday afternoon). So, not only will they not tell me what's going on, but I've also got surgery scheduled for something that I don't even know why.
As it turns out, I have an ejection fraction of 30%. The ejection fraction is the percent of the blood within the ventricle that is pumped out during each heart beat. Of course, your heart doesn't completely compress, so 100% is probably not attainable, but a normal person my age has an ejection fraction between 60-70% - so my heart is only pumping at about 50% efficiency related to what it should. That's NOT GOOD. I also have an enlarged heart - the heart muscle is much bigger than it should be - likely due to the fact that it has to work harder to get enough blood to my body. They put me on medications that are supposed to help lower my blood pressure and help my heart try to contract better. The "good news" (if there is such a thing) in all of this is that I don't have any blocked arteries in my heart. Other than that, my heart is failing.
That all happened within about a week - finding out that I have a problem and then going into surgery and getting the full extent of the problem. It's pretty tough for me to wrap my head around the whole problem and all the ramifications that go along with it. My wife has been a rock, going to all my appointments and just being a trooper and not letting it show if it's affecting her. It would be so hard to go through this whole thing alone, and I realize how totally blessed I am to have her here with me.
It's also tough dealing with mortality. I know that it can happen at any time, any place, any age, and no warning. I'm fine with that, but I don't think I'm a big fan of knowing one thing that can actually kill me at any time...not so much fun. I've had a bit of time to think about things, but I'm still trying to come to grips with it.
In all truthfulness, I don't feel any different than I did 1 year ago...even 5 years ago. One of the cardiologists thinks that I've had this condition for awhile and that it's not just a sudden onset. Either way, now it's time to live with it. Thinking about death is not an enjoyable process, but one that I've been faced with rather quickly - at a time that I never would've thought I'd have to think about it. What does one do when one finds out they have a condition that is potentially life-threatening...immediately?
Right now, I'm going to fight it by doing what I've always done - just carry on. I don't ever want to let it get the better of me. I want to go out my own way. I recently read Lance Armstrong's book, and it's given me alot of inspiration. Here is a man who had a foreign "being" or "life" inside him that was trying to take his away - and he fought through it. I want to do the same thing. I'm starting to make goals - goals that I don't care whether they are practical or reasonable. Maybe it's so that I can keep up hope that I can/will get better (whatever "better" may mean).
Goal #1 - play soccer. I have grown completely fond of the sport...the most popular sport in the world. I played a couple summers in a co-ed league in Chicago and had fun. I'm in a bit worse shape, and had I not known about my condition, I would've still tried to get in better shape so I could take the pitch again. That's exactly what I want to do - I want to work myself into better shape (and hope my heart complies) so that I can play soccer again. When I watch matches live or on TV, I see the pure excitement when a player scores a goal - as if it's some out-of-body experience of sheer madness. I've felt that before...sure, it was in a beginner's co-ed league with no goalies (but very small goals), but the feeling of putting the ball in the back of the net is so exciting. I want to feel that again. I'm sure there are other accomplishments that could give me the same rush, but this is one that I want to hold on to; it's one that going to probably give me the toughest fight. It will make that next goal feel that much sweeter!
Goal #2 - live a "normal" life. I want to just live, do the day-to-day things. This is the one that I'm most worried about. The cardiologist that I talked to a couple weeks ago said that he has patients with a 30% ejection fraction that are out playing golf every day, and he also has patients with a 30% ejection fraction that are upstairs in a hospital bed and can't function and waiting on a heart transplant. I want to be able to continue to live my life. I don't know if this is a condition that can be "beaten," but I'm going to definitely give it a run for its money. If this is what's going to be the end of me, it's going to be a knock-em-out, drag-em-out fight. If it's going to be a fight to the death, then that's how it's gonna be. I don't plan on giving up until I can accomplish goal #1.
It's a short list, but I can't really think of anything else beyond that. I just wanna be able to keep going. My biggest fear is losing the one person that means the most to me - my wife. She doesn't deserve this. She is the one that I feel the worst for - she agreed to this without knowing what she signed up for, and I don't think it's fair to her. Like I said before, she has been a trooper though. She makes all the doctor's appointments and hearing the results look easy. I don't know how she does it. If you keep anyone in your thoughts, please, let it be her - she is the one that keeps me afloat.
I'm not afraid of dying - I know that's how it's going to end anyway. Well, time for me to go and kick some ass in Round 1.
The problem is is that I've got idiopathic dilated cardiomyopathy. In short, it is heart failure - heart failure that the doctors can't seem to figure out the cause. One doctor told me that it's idiopathic because sometimes doctors are idiots when they can't figure out why. Nice way of explaining it to me, but still just as difficult to take. Trust me, it's not easy to hear that you've got a "condition" that you didn't know you have; a condition that may get better, may stay the same, and may get worse - and having about a 1/3 chance for any of them. On the bright side, I have a 66% chance of staying the way it is or getting better - those odds are sounding better and better every day.
Just a little background - I woke up about 2AM in early November with a pain under my armpit and my heart was racing. I had no idea what was going on, but I did remember that I was carrying a box full of heavy books (read: law school books) and it slipped but I caught it. Was the pain I was feeling just a pulled muscle or a problem with my heart? My father has had a heart attack, and I wasn't sure if this was the wonderful world of genetics getting the better of me. Sylwia took me to the ER to get me checked out. Before we even got to the hospital, I was feeling better, and it was feeling more and more like a pulled muscle.
As it turns out, it's good that I went ahead and went to the hospital. They took an EKG and noticed that my heart wasn't beating in the proper sinus rhythm. I have a left bundle branch block - that is, the main wiring to the heart splits in half with one half carrying the electrical signals for one half the heart to tell that side to beat and the other half carrying the electrical signals for the other half of the heart to tell that side to beat. Unfortunately, the wiring controlling the left side of my heart is a bit slow in conducting the signal, so my left side is beating a bit behind, or a bit too slow. (note: this is just my understanding that I've gathered from the various doctors; if this isn't what these things mean, keep in mind that I'm a lawyer, not a medical doctor!) Again, they don't know what's causing this in me - it could be any number of things, including genetics or a congenital defect (from birth). The ER told me to follow up with a cardiologist to get this problem checked out.
Well, being a bit scared to go and hear bad news with only a couple weeks before my wife and I were going on a cruise to get re-married, I put off the follow-up until the end of December. I found a cardiologist on my insurance website - bad choice - and scheduled an appointment. At the appointment, he scheduled me for an echocardiogram (like an ultrasound of the heart) and the treadmill/stress test. I went in on January 7 for the echo and everything has been different ever since.
Before I even got back to my office from getting the echo done, I had a voicemail from the doctor's office telling me that they want me to come in first thing the next morning - and that they cancelled the stress test. Upon hearing that, my stomach sank. I knew there was no way they would call that fast and cancel other tests if it was good news...and the urgency in their voicemail was very disturbing. I tried to call and ask what was going on, but all they said was that they would tell me what was going on the next morning. Alot of good that did...by the time I got home, I had another voicemail indicating that I was scheduled for a procedure at the nearest hospital on Monday morning (this was Thursday afternoon). So, not only will they not tell me what's going on, but I've also got surgery scheduled for something that I don't even know why.
As it turns out, I have an ejection fraction of 30%. The ejection fraction is the percent of the blood within the ventricle that is pumped out during each heart beat. Of course, your heart doesn't completely compress, so 100% is probably not attainable, but a normal person my age has an ejection fraction between 60-70% - so my heart is only pumping at about 50% efficiency related to what it should. That's NOT GOOD. I also have an enlarged heart - the heart muscle is much bigger than it should be - likely due to the fact that it has to work harder to get enough blood to my body. They put me on medications that are supposed to help lower my blood pressure and help my heart try to contract better. The "good news" (if there is such a thing) in all of this is that I don't have any blocked arteries in my heart. Other than that, my heart is failing.
That all happened within about a week - finding out that I have a problem and then going into surgery and getting the full extent of the problem. It's pretty tough for me to wrap my head around the whole problem and all the ramifications that go along with it. My wife has been a rock, going to all my appointments and just being a trooper and not letting it show if it's affecting her. It would be so hard to go through this whole thing alone, and I realize how totally blessed I am to have her here with me.
It's also tough dealing with mortality. I know that it can happen at any time, any place, any age, and no warning. I'm fine with that, but I don't think I'm a big fan of knowing one thing that can actually kill me at any time...not so much fun. I've had a bit of time to think about things, but I'm still trying to come to grips with it.
In all truthfulness, I don't feel any different than I did 1 year ago...even 5 years ago. One of the cardiologists thinks that I've had this condition for awhile and that it's not just a sudden onset. Either way, now it's time to live with it. Thinking about death is not an enjoyable process, but one that I've been faced with rather quickly - at a time that I never would've thought I'd have to think about it. What does one do when one finds out they have a condition that is potentially life-threatening...immediately?
Right now, I'm going to fight it by doing what I've always done - just carry on. I don't ever want to let it get the better of me. I want to go out my own way. I recently read Lance Armstrong's book, and it's given me alot of inspiration. Here is a man who had a foreign "being" or "life" inside him that was trying to take his away - and he fought through it. I want to do the same thing. I'm starting to make goals - goals that I don't care whether they are practical or reasonable. Maybe it's so that I can keep up hope that I can/will get better (whatever "better" may mean).
Goal #1 - play soccer. I have grown completely fond of the sport...the most popular sport in the world. I played a couple summers in a co-ed league in Chicago and had fun. I'm in a bit worse shape, and had I not known about my condition, I would've still tried to get in better shape so I could take the pitch again. That's exactly what I want to do - I want to work myself into better shape (and hope my heart complies) so that I can play soccer again. When I watch matches live or on TV, I see the pure excitement when a player scores a goal - as if it's some out-of-body experience of sheer madness. I've felt that before...sure, it was in a beginner's co-ed league with no goalies (but very small goals), but the feeling of putting the ball in the back of the net is so exciting. I want to feel that again. I'm sure there are other accomplishments that could give me the same rush, but this is one that I want to hold on to; it's one that going to probably give me the toughest fight. It will make that next goal feel that much sweeter!
Goal #2 - live a "normal" life. I want to just live, do the day-to-day things. This is the one that I'm most worried about. The cardiologist that I talked to a couple weeks ago said that he has patients with a 30% ejection fraction that are out playing golf every day, and he also has patients with a 30% ejection fraction that are upstairs in a hospital bed and can't function and waiting on a heart transplant. I want to be able to continue to live my life. I don't know if this is a condition that can be "beaten," but I'm going to definitely give it a run for its money. If this is what's going to be the end of me, it's going to be a knock-em-out, drag-em-out fight. If it's going to be a fight to the death, then that's how it's gonna be. I don't plan on giving up until I can accomplish goal #1.
It's a short list, but I can't really think of anything else beyond that. I just wanna be able to keep going. My biggest fear is losing the one person that means the most to me - my wife. She doesn't deserve this. She is the one that I feel the worst for - she agreed to this without knowing what she signed up for, and I don't think it's fair to her. Like I said before, she has been a trooper though. She makes all the doctor's appointments and hearing the results look easy. I don't know how she does it. If you keep anyone in your thoughts, please, let it be her - she is the one that keeps me afloat.
I'm not afraid of dying - I know that's how it's going to end anyway. Well, time for me to go and kick some ass in Round 1.
posted by Rocco @ 12:58 AM
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