Hello there!
My name is Michael. I'm 22 years old and I'm currently waiting on word from my cardiologist about next steps in preparation for an impending AVR. It's no longer a question of if, but when. My condition is described as severe aortic stenosis and aortic incompetence (regurgitation) with a dilated aortic root (4.3 cm at last check). I should also note that my aortic valve is bicuspid. Really this post is meant as a bit of an introduction and rant, but also in hopes of getting some reassurance (or perhaps the cold hard truth).
You see, in my youth I never really gave much thought to my condition. I knew that I had to watch myself during physical exertion but other than that it was no more than the periodic vague talk about possible surgery at some undetermined future date. But when you're young you tend not to think much about the future. Now however, I've just graduated from university and am in the process of interviewing for that first real job. This means that I've started to seriously consider my future; everything from professional life to having a family. Incidentally, recent test results have shown that over the past year there has been a fairly significant increase in the gradient across my aortic valve (currently a peak/mean of 153/83 mmHg) despite no change in the area of the valve. I've been told that this means that surgery is most likely imminent. Prior to having done any serious searching on the subject I knew that this would most likely mean a mechanical valve with anti-coagulation for the rest of my life. "No biggie" I thought. Of course I was completely unaware of the host of potential complications associated with the procedure and subsequent medication. Now, after some basic searching on the subject I've gone from blissful ignorance to anxiety and being fairly disheartened. I'm sure many of you have seen the studies pinning the average post-op lifespan at around 16-20 years for someone my age. Although I know that every case is different and that these numbers are likely misleading, I can't help but be depressed about the prospect of not even making it to 40. On the other hand, I've seen some more encouraging information on this forum but at the same time it seems that the 'In Loving Memory' board is also full of remarkable people who lost their battle at similarly young ages further reinforcing that original feeling of hopelessness. It seems that what is really bothering me is the fear of the unknown, yet the more I read the more I get the pants scared off me.
An often-quoted mitigating factor seems to be the hope that current and future developments in treatment will continually increase the length and quality of life for someone in my position. However, based on what I've seen it appears to me that there really hasn't been all that much advancement in the previous 50 years given that the primary anti-coagulant being used is still Warfarin and that the artificial valves themselves really have not changed much. Particularly, as an engineer, I'm amazed that the issue of coagulation with these mechanical valves is still just as big as it was 50 years ago. Maybe that's just me being naive, but it really doesn't leave me with too much hope for future developments.
If you are in the same position as me and are reading this, I hope I haven't prompted any similar feelings of anxiety. But any time this comes up, it's really hard to get off my mind. What do you think? Are these feelings mostly justified or am I just going slightly crazy (even if expectedly so)?
Ah yes, and nice to meet you all
- Michael
My name is Michael. I'm 22 years old and I'm currently waiting on word from my cardiologist about next steps in preparation for an impending AVR. It's no longer a question of if, but when. My condition is described as severe aortic stenosis and aortic incompetence (regurgitation) with a dilated aortic root (4.3 cm at last check). I should also note that my aortic valve is bicuspid. Really this post is meant as a bit of an introduction and rant, but also in hopes of getting some reassurance (or perhaps the cold hard truth).
You see, in my youth I never really gave much thought to my condition. I knew that I had to watch myself during physical exertion but other than that it was no more than the periodic vague talk about possible surgery at some undetermined future date. But when you're young you tend not to think much about the future. Now however, I've just graduated from university and am in the process of interviewing for that first real job. This means that I've started to seriously consider my future; everything from professional life to having a family. Incidentally, recent test results have shown that over the past year there has been a fairly significant increase in the gradient across my aortic valve (currently a peak/mean of 153/83 mmHg) despite no change in the area of the valve. I've been told that this means that surgery is most likely imminent. Prior to having done any serious searching on the subject I knew that this would most likely mean a mechanical valve with anti-coagulation for the rest of my life. "No biggie" I thought. Of course I was completely unaware of the host of potential complications associated with the procedure and subsequent medication. Now, after some basic searching on the subject I've gone from blissful ignorance to anxiety and being fairly disheartened. I'm sure many of you have seen the studies pinning the average post-op lifespan at around 16-20 years for someone my age. Although I know that every case is different and that these numbers are likely misleading, I can't help but be depressed about the prospect of not even making it to 40. On the other hand, I've seen some more encouraging information on this forum but at the same time it seems that the 'In Loving Memory' board is also full of remarkable people who lost their battle at similarly young ages further reinforcing that original feeling of hopelessness. It seems that what is really bothering me is the fear of the unknown, yet the more I read the more I get the pants scared off me.
An often-quoted mitigating factor seems to be the hope that current and future developments in treatment will continually increase the length and quality of life for someone in my position. However, based on what I've seen it appears to me that there really hasn't been all that much advancement in the previous 50 years given that the primary anti-coagulant being used is still Warfarin and that the artificial valves themselves really have not changed much. Particularly, as an engineer, I'm amazed that the issue of coagulation with these mechanical valves is still just as big as it was 50 years ago. Maybe that's just me being naive, but it really doesn't leave me with too much hope for future developments.
If you are in the same position as me and are reading this, I hope I haven't prompted any similar feelings of anxiety. But any time this comes up, it's really hard to get off my mind. What do you think? Are these feelings mostly justified or am I just going slightly crazy (even if expectedly so)?
Ah yes, and nice to meet you all
- Michael
