Feb 25: Good News. Then...Bad News....
Well, I only have about 30 minutes and there's much to report, so this is probably going to be a two-parter. I wrote a lot from the hotel room in Boston, but for some reason the majority didn't save while typing and it was too late to re-do the entire thing.
Boston: it was a great visit, entirely worth the trip and continuing to be seen at Brigham. Friday the 20th was an action packed day: chest X-ray, echocardiogram, stress echocardiogram test, appointment with surgeon Dr. Cohn, appointment with cardiologist Dr. Baughman. There were several concerns to be addressed as this was my first visit since September 2007, two months after heart surgery #3. My last echo with my local cardiologist was about six months ago and was a little bit worrisome: my left atrial size was still up and my right ventricle was still very hypokinetic, as bad as if I'd had heart attack damage in that area. And the continuing concern that my left ventricle's response to having everything cut out of it would be to dilate and become dysfunctional. Well, the news was all good! My left atrium has returned to 3.9 cm (above 4.0 is enlarged), the right ventricle is squeezing wonderfully (it looks different because of the tricuspid repair surgery, but squeezes well) and my left ventricle is functioning perfectly! And the better news is that Dr. B says that if the LV hasn't started to change now that it won't, unless the valve fails or I develop coronary disease (no history in the family, but that hasn't helped up until now!). I lasted for eight minutes on the treadmill (incline 14 degrees, speed 3.4 mph--low average for my age) although I was exhausted for hours afterwards. So, everything is as good as it can be under the circumstances--great report.
So, the issues will always be that I have a tiny valve opening and will get more out of breath and fatigued then other people, there remains the split in my sternum (which is painful every day) and the opening in my right back from the lung surgery. The fact that I have a mechanical valve clicking away which means the damn coumadin.... I did broach the issue of the sternum with Dr. Cohn who made a face and said, in a very discouraging tone of voice, "Do you really want to discuss another surgery for that? I mean, let's face it Laurie, your body just doesn't like surgery." All things considered, I'm willing to just live with that for now.
And no one yelled at me about my weight!! They all raved about how great I looked, because they have never seen me except after major surgery and/or in heart failure. So, the bar was pretty low--they saw me for the first time not in heart failure, no surgery for 18 months, with hair nice and make-up done. From their standpoint I looked phenomenally better! I probably won't get away with that again, however : )
There was one big issue that I had chosen not to post and didn't talk about until a week ago. Throughout my life I had felt my heart doing funny flip-flops, going fast, going too slow. After the initial diagnosis I wore a heart monitor for three weeks and it showed a really fast rhythm with little exertion (walking to the bathroom with a heart rate of 120-130), extra beats (PVCs) and what's called an idioventricular rhythm where my rate would drop to about 35 beats a minute. All of that got better even after the first surgery. I continued to have PVCs (everyone does) and saw them during the times I was monitored, so knew what they felt like. Then about six months ago I started feeling different stuff. I knew they were coming from the ventricles, but it felt like more than just every once in a while. Then in November there was an episode that lasted for about 30 seconds and was so bad I thought I was going to pass out, felt really horrid for about two minutes. It scared me. I called my cardiologist and got another monitor for three weeks and we got a surprise: short runs of VT--ventricular tachycardia. Several 3-beat runs, one 5-beat run and one 7-beat run. Not great. (On the bright side it proves once again that I don't exaggerate!) My local cardiologist wanted me to go back on beta-blockers, which I was on before and flatly refused--if you remember, I felt horrible the whole time they were mandatory. And after the 5-beat run I got blood work done and found my magnesium level was low, which can cause those bad beats. Googled what foods contained high amounts of magnesium (pumpkin seeds, brazil nuts & almonds) and started eating some every day (but not before the 7-beat run happened) and found that they really decreased. So, I presented all this along with the EKG strips to Dr. B and we decided that it wasn't anything to get worried about. I certainly have a lot of scar tissue, which can lead to these, and that combined with a slightly low magnesium level probably brought them on. But it's not worth taking medication daily that makes me feel horrible constantly, it's not worth trying to burn out the scar tissue and it's not worth getting an internal defibrillator. If it gets worse, then we re-evaluate.
So, I came back from Boston Saturday night, Feb 21, in a great mood. Felt the most hopeful I have for the last five years since the horror began. Arrived about 11 pm and slept soundly, woke Sunday able to finally relax and stop worrying about getting really sick and being disabled in the next few years. Yeah!!!
And then while carrying some books down to the basement I tripped and fell down the last few stairs....
Clearly I survived, and it's now almost an hour later, so I need to get ready for bed. I'll post soon with the bad news. Thanks for checking, Laurie
Boston: it was a great visit, entirely worth the trip and continuing to be seen at Brigham. Friday the 20th was an action packed day: chest X-ray, echocardiogram, stress echocardiogram test, appointment with surgeon Dr. Cohn, appointment with cardiologist Dr. Baughman. There were several concerns to be addressed as this was my first visit since September 2007, two months after heart surgery #3. My last echo with my local cardiologist was about six months ago and was a little bit worrisome: my left atrial size was still up and my right ventricle was still very hypokinetic, as bad as if I'd had heart attack damage in that area. And the continuing concern that my left ventricle's response to having everything cut out of it would be to dilate and become dysfunctional. Well, the news was all good! My left atrium has returned to 3.9 cm (above 4.0 is enlarged), the right ventricle is squeezing wonderfully (it looks different because of the tricuspid repair surgery, but squeezes well) and my left ventricle is functioning perfectly! And the better news is that Dr. B says that if the LV hasn't started to change now that it won't, unless the valve fails or I develop coronary disease (no history in the family, but that hasn't helped up until now!). I lasted for eight minutes on the treadmill (incline 14 degrees, speed 3.4 mph--low average for my age) although I was exhausted for hours afterwards. So, everything is as good as it can be under the circumstances--great report.
So, the issues will always be that I have a tiny valve opening and will get more out of breath and fatigued then other people, there remains the split in my sternum (which is painful every day) and the opening in my right back from the lung surgery. The fact that I have a mechanical valve clicking away which means the damn coumadin.... I did broach the issue of the sternum with Dr. Cohn who made a face and said, in a very discouraging tone of voice, "Do you really want to discuss another surgery for that? I mean, let's face it Laurie, your body just doesn't like surgery." All things considered, I'm willing to just live with that for now.
And no one yelled at me about my weight!! They all raved about how great I looked, because they have never seen me except after major surgery and/or in heart failure. So, the bar was pretty low--they saw me for the first time not in heart failure, no surgery for 18 months, with hair nice and make-up done. From their standpoint I looked phenomenally better! I probably won't get away with that again, however : )
There was one big issue that I had chosen not to post and didn't talk about until a week ago. Throughout my life I had felt my heart doing funny flip-flops, going fast, going too slow. After the initial diagnosis I wore a heart monitor for three weeks and it showed a really fast rhythm with little exertion (walking to the bathroom with a heart rate of 120-130), extra beats (PVCs) and what's called an idioventricular rhythm where my rate would drop to about 35 beats a minute. All of that got better even after the first surgery. I continued to have PVCs (everyone does) and saw them during the times I was monitored, so knew what they felt like. Then about six months ago I started feeling different stuff. I knew they were coming from the ventricles, but it felt like more than just every once in a while. Then in November there was an episode that lasted for about 30 seconds and was so bad I thought I was going to pass out, felt really horrid for about two minutes. It scared me. I called my cardiologist and got another monitor for three weeks and we got a surprise: short runs of VT--ventricular tachycardia. Several 3-beat runs, one 5-beat run and one 7-beat run. Not great. (On the bright side it proves once again that I don't exaggerate!) My local cardiologist wanted me to go back on beta-blockers, which I was on before and flatly refused--if you remember, I felt horrible the whole time they were mandatory. And after the 5-beat run I got blood work done and found my magnesium level was low, which can cause those bad beats. Googled what foods contained high amounts of magnesium (pumpkin seeds, brazil nuts & almonds) and started eating some every day (but not before the 7-beat run happened) and found that they really decreased. So, I presented all this along with the EKG strips to Dr. B and we decided that it wasn't anything to get worried about. I certainly have a lot of scar tissue, which can lead to these, and that combined with a slightly low magnesium level probably brought them on. But it's not worth taking medication daily that makes me feel horrible constantly, it's not worth trying to burn out the scar tissue and it's not worth getting an internal defibrillator. If it gets worse, then we re-evaluate.
So, I came back from Boston Saturday night, Feb 21, in a great mood. Felt the most hopeful I have for the last five years since the horror began. Arrived about 11 pm and slept soundly, woke Sunday able to finally relax and stop worrying about getting really sick and being disabled in the next few years. Yeah!!!
And then while carrying some books down to the basement I tripped and fell down the last few stairs....
Clearly I survived, and it's now almost an hour later, so I need to get ready for bed. I'll post soon with the bad news. Thanks for checking, Laurie
posted by Laurie @ 9:31 PM
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