I wasn't going to post an update because I'm in the middle of treatment, but my husband reminded me that there might be lurkers on the board who would be helped by my experience, so here goes.
My body reacted to my valve-and-aorta replacement surgery by developing a very rare complication: the rapid post-surgical onset of constrictive pericarditis.
For those of you who aren't familiar with this malady, it isn't the type of pericarditis that many people get after surgery. "Regular" pericarditis is the inflammation of the paricardium (the sac that covers the heart.) I had "regular" pericarditis, too, after surgery.
Constrictive pericarditis is the development of scar tissue on the pericardium. The scar tissue squeezes the heart and restricts its movements.
Usually constrictive pericarditis develops over the course of years, even decades. I developed mine in a matter of weeks. It was my body's auto-immune response to surgery. Another auto-immune response my body had was fluid in my chest cavity (not lungs) that didn't seem to have a particular cause, and re-filled within a few hours of being drained. (That fluid has finally gone.)
The treatment for constrictive percarditis is steroids, which are supposed to eliminate the scar tissue and prevent more from developing. I have given up understanding exactly how they are supposed to accomplish this! (Please don't post and tell me how steroids work -- I know how they work; I just don't understand how they work IN THIS CASE, and I don't think it's worth trying to force my brain to get it.)
I have been on a high dose of steroids (prednisone) for a month now, and I am just beginning to taper the dose. I will be tapering the dose for several months, because if you don't decrease the steroids slowly, you can cause a rebound reaction. The steroids will still be working on my problem while the dose is being reduced.
I had my "before" echo last week, and I think I'm having a "before" MRI soon. I know it's funny to have "before" tests a few weeks into the treatment, but with SIX doctors all giving their input, this is what happens. And by the way, you CAN have too much of a good thing, e.g., doctors. I finally said to one of them: can YOU be the final-word, main-contact doc on this thing? So now we have a point-man!
The cardio was encouraged that my vena cava (a lower heart part) is not constricted. Otherwise we really don't have any data to report, good or bad, about the treatment at this point.
So the moral of the story, for anyone who is still reading this, is that when a doctor -- this will likely be your surgeon, or a busy cardio -- says, "Your heart-rate is high. Let's lower it with drugs without bothering to figure out WHY it's high," you should say, "I'm not swallowing anything until you figure out why it's high."
Why do I give this advice? Because if I HAD simply taken my surgeon's advice and taken a beta-blocker or some other heart-rate-lowering drug, I might have gone undiagnosed for even longer, and then I would have been in serious trouble. But since I don't tolerate beta-blockers, everyone had to investigate further.
Also, if you develop "regular" pericarditis after surgery, and it's not responding to treatment, ask the doctors to treat it aggressively. This might have helped me. My surgeon was reluctant to give me steroids at that time, because he was afraid of how I might react to them. (This was a good concern on his part, but as you can see, I ended up on them, anyway.)
So that's the update!
My body reacted to my valve-and-aorta replacement surgery by developing a very rare complication: the rapid post-surgical onset of constrictive pericarditis.
For those of you who aren't familiar with this malady, it isn't the type of pericarditis that many people get after surgery. "Regular" pericarditis is the inflammation of the paricardium (the sac that covers the heart.) I had "regular" pericarditis, too, after surgery.
Constrictive pericarditis is the development of scar tissue on the pericardium. The scar tissue squeezes the heart and restricts its movements.
Usually constrictive pericarditis develops over the course of years, even decades. I developed mine in a matter of weeks. It was my body's auto-immune response to surgery. Another auto-immune response my body had was fluid in my chest cavity (not lungs) that didn't seem to have a particular cause, and re-filled within a few hours of being drained. (That fluid has finally gone.)
The treatment for constrictive percarditis is steroids, which are supposed to eliminate the scar tissue and prevent more from developing. I have given up understanding exactly how they are supposed to accomplish this! (Please don't post and tell me how steroids work -- I know how they work; I just don't understand how they work IN THIS CASE, and I don't think it's worth trying to force my brain to get it.)
I have been on a high dose of steroids (prednisone) for a month now, and I am just beginning to taper the dose. I will be tapering the dose for several months, because if you don't decrease the steroids slowly, you can cause a rebound reaction. The steroids will still be working on my problem while the dose is being reduced.
I had my "before" echo last week, and I think I'm having a "before" MRI soon. I know it's funny to have "before" tests a few weeks into the treatment, but with SIX doctors all giving their input, this is what happens. And by the way, you CAN have too much of a good thing, e.g., doctors. I finally said to one of them: can YOU be the final-word, main-contact doc on this thing? So now we have a point-man!
The cardio was encouraged that my vena cava (a lower heart part) is not constricted. Otherwise we really don't have any data to report, good or bad, about the treatment at this point.
So the moral of the story, for anyone who is still reading this, is that when a doctor -- this will likely be your surgeon, or a busy cardio -- says, "Your heart-rate is high. Let's lower it with drugs without bothering to figure out WHY it's high," you should say, "I'm not swallowing anything until you figure out why it's high."
Why do I give this advice? Because if I HAD simply taken my surgeon's advice and taken a beta-blocker or some other heart-rate-lowering drug, I might have gone undiagnosed for even longer, and then I would have been in serious trouble. But since I don't tolerate beta-blockers, everyone had to investigate further.
Also, if you develop "regular" pericarditis after surgery, and it's not responding to treatment, ask the doctors to treat it aggressively. This might have helped me. My surgeon was reluctant to give me steroids at that time, because he was afraid of how I might react to them. (This was a good concern on his part, but as you can see, I ended up on them, anyway.)
So that's the update!
