Kira
01-09-2008, 04:38 AM
I had an appointment with my metabolic doc today and it went pretty well. We had a pretty long visit and talked about the decline I've had in recent months. The only thing is that I am kind of freaked out about this heart stuff again. I have been having trouble that we think is autonomic dysfunction (tachycardia, labile BPs, unexplained brief fevers, etc). I also have been having increased shortness of breath as well as a lot of fluid retention that comes and goes. The shortness of breath is not the textbook, classic congestive heart failure kind that is worse when laying down and better when you sit up... but it is definitely there, and my mom even noticed it and says I even do it when I sleep. The fluid retention is just downright freaky, and can be a congestive heart failure thing, too (though many other things can cause it). I get it so bad that it is what's called "pitting" edema... where you push on it and it leaves a dent where your finger was. I get noticeably puffy when I retain water, and the scale reflects it, too. It is getting worse, though... a couple of weeks ago, I put on 12 pounds of water weight in about 2 days, then lost those 12 pounds again over the next 4 days.
Anyway, my metabolic doc is worried that my mito is affecting my heart more these days, and wants me to go to the cardiologist. You can get a cardiomyopathy (heart muscle disease) from mito, and I actually just recently had an online friend with mito die from congestive heart failure that came on pretty quickly. He said that my cardiologist should be able to figure out if the tachycardia, labile BPs, etc is autonomic or if there's something else going on, like an arrhythmia. He wants me to get a new echocardiogram, an EKG, and do a Holter monitor. I don't know... it's just scary. At least we might be able to do something about the autonomic stuff, though, if the cardiology guy will prescribe me a beta-blocker.
I have an appointment with my primary care doc tomorrow, so I will also talk to him about this stuff and see what his thoughts are on the autonomic stuff, etc. I may be able to get the EKG out of the way in his office, too, which would be nice.
I have had minor funky stuff wrong with my heart for a while now (abnormal EKG, an unexplained pericardial effusion, tachycardia, etc). But it seemed, from today's appointment, that he was really thinking something has gotten worse with the heart stuff. Most of the stuff that's wrong with me is disabling, exhausting, etc... but not life-threatening. If I am developing heart failure, that could be life-threatening. So I'm scared is all. Thanks for letting me vent.
Anyway, my metabolic doc is worried that my mito is affecting my heart more these days, and wants me to go to the cardiologist. You can get a cardiomyopathy (heart muscle disease) from mito, and I actually just recently had an online friend with mito die from congestive heart failure that came on pretty quickly. He said that my cardiologist should be able to figure out if the tachycardia, labile BPs, etc is autonomic or if there's something else going on, like an arrhythmia. He wants me to get a new echocardiogram, an EKG, and do a Holter monitor. I don't know... it's just scary. At least we might be able to do something about the autonomic stuff, though, if the cardiology guy will prescribe me a beta-blocker.
I have an appointment with my primary care doc tomorrow, so I will also talk to him about this stuff and see what his thoughts are on the autonomic stuff, etc. I may be able to get the EKG out of the way in his office, too, which would be nice.
I have had minor funky stuff wrong with my heart for a while now (abnormal EKG, an unexplained pericardial effusion, tachycardia, etc). But it seemed, from today's appointment, that he was really thinking something has gotten worse with the heart stuff. Most of the stuff that's wrong with me is disabling, exhausting, etc... but not life-threatening. If I am developing heart failure, that could be life-threatening. So I'm scared is all. Thanks for letting me vent.