D
dho
Hi all,
First time post. I am a 29yo very active male diagnosed with a bicuspid aortic valve two years ago while being followed-up for a biking injury. Initially I was told my valve was moderately leaky and that there was a slight enlargement of my ascending aorta. Since then, I have been followed with MRI and echo once every six months. Since everything looked stable, my cardiologist was planning on reducing my testing frequency to once every two years. Well, my June MRI showed a yearly 0.2 cm increase in the size of my ascending aorta to 4.6 cm. So much for the checkups every two years!
Now the entire situation has me really anxious and bit depressed. I'm hoping that some of you on these forums can help provide some personal perspective for me. Specifically, I currently live a very full life -- I'm a professor in a demanding field of research, enjoy active pursuits like snorkeling and mountain hiking around the world, and play sports religiously (no lifting since two years ago, but play soccer, basketball, ultimate frisbee, run, or bike almost every day) at a fairly high level of intensity. Other than these heart issues, I'm healthy and take very good care of myself. I'm despondent with the notion that this heart condition will curtail my interests and radically alter my life. My cardiologist told me that he would simply stop playing sports and take up walking -- but I think that will be incredibly hard for me to do unless it is absolutely essential, and he didn't think it was necessarily essential (advisable, not essential). How have others coped?
Secondly, since I am a professional scientist, though not a cardiologist, I delved into the literature on aortic disease during the last week. I read the recent mouse paper on losartan treatment of Marfan's mice with great interest. I didn't tolerate metoprolol well when my cardiologist tried to treat me with it two years ago prophylactically, so I am little wary of beta blockers. I know that losartan is not yet in clinical trials, and I know that the preliminary Science paper only described findings in mice, but I am extremely curious to find out if anyone on these forums has first-hand or anecdotal experience using this drug off-label (well, technically on-label, since it is still being used for hypertension) as a replacement for a beta blocker in the treatment of an enlarged ascending aorta. Because my baseline blood pressure is already low (when I went on metoprolol, my resting pulse dropped to 30 and my blood pressure well below 100), my cardiologist doesn't think I should consider anything except a beta blocker. Any thoughts greatly appreciated.
Thanks for creating this network of similarly affected people. I'm hoping to have a long and enjoyable period before surgical intervention is necessary, but I'm steeling myself for the reality that it might creep up on me sooner than I'd like!
Cheers,
dave
First time post. I am a 29yo very active male diagnosed with a bicuspid aortic valve two years ago while being followed-up for a biking injury. Initially I was told my valve was moderately leaky and that there was a slight enlargement of my ascending aorta. Since then, I have been followed with MRI and echo once every six months. Since everything looked stable, my cardiologist was planning on reducing my testing frequency to once every two years. Well, my June MRI showed a yearly 0.2 cm increase in the size of my ascending aorta to 4.6 cm. So much for the checkups every two years!
Now the entire situation has me really anxious and bit depressed. I'm hoping that some of you on these forums can help provide some personal perspective for me. Specifically, I currently live a very full life -- I'm a professor in a demanding field of research, enjoy active pursuits like snorkeling and mountain hiking around the world, and play sports religiously (no lifting since two years ago, but play soccer, basketball, ultimate frisbee, run, or bike almost every day) at a fairly high level of intensity. Other than these heart issues, I'm healthy and take very good care of myself. I'm despondent with the notion that this heart condition will curtail my interests and radically alter my life. My cardiologist told me that he would simply stop playing sports and take up walking -- but I think that will be incredibly hard for me to do unless it is absolutely essential, and he didn't think it was necessarily essential (advisable, not essential). How have others coped?
Secondly, since I am a professional scientist, though not a cardiologist, I delved into the literature on aortic disease during the last week. I read the recent mouse paper on losartan treatment of Marfan's mice with great interest. I didn't tolerate metoprolol well when my cardiologist tried to treat me with it two years ago prophylactically, so I am little wary of beta blockers. I know that losartan is not yet in clinical trials, and I know that the preliminary Science paper only described findings in mice, but I am extremely curious to find out if anyone on these forums has first-hand or anecdotal experience using this drug off-label (well, technically on-label, since it is still being used for hypertension) as a replacement for a beta blocker in the treatment of an enlarged ascending aorta. Because my baseline blood pressure is already low (when I went on metoprolol, my resting pulse dropped to 30 and my blood pressure well below 100), my cardiologist doesn't think I should consider anything except a beta blocker. Any thoughts greatly appreciated.
Thanks for creating this network of similarly affected people. I'm hoping to have a long and enjoyable period before surgical intervention is necessary, but I'm steeling myself for the reality that it might creep up on me sooner than I'd like!
Cheers,
dave
