Nov 22: Elaborations on The Monster

No comments on the previous post. Interesting.... Gee, I hope Deneen's OK.

Anyway, a few more thoughts on The Monster. While the reactions that I detailed to the different tests/treatment sound realistic to someone who didn't know what to expect, did I have the same feelings? Because I should know what to expect, being a cardiology P.A. and managing to have a disease in my specialty, right? But it's a double edged sword: I knew what to expect. And, unfortunately, have also seen the rare and unusual complications and problems. So, while I know what's coming, it doesn't make it any easier. In a lot of ways it's worse.

The TEE really didn't bother me--where you have to swallow a small garden hose to get the ultrasound probe in the esophagus, which then gives a stunningly clear picture of the mitral and aortic valves, since it runs right next to them. This is better than the usual echocardiogram where you are looking through skin, muscle, bone and lungs before you see the heart. Admitting to my slight (!) tendency for needing control, for my first one down at Presbyterian I actually asked for LESS sedation so I could watch. They said afterwards that they knew how conscious I was because every time the attending cardiologist said the word 'repair' and corrected the cardiology fellow (higher education past residency) from saying 'replacement' I actually smiled. I even remember a lot of it. It really wasn't that bad. Nor were the other two up at Brigham, although they don't give as much numbing stuff to swallow, so it was more uncomfortable. The last one was the worst, because they stayed in there an extra long time trying to get every measurement from every angle. Instead of the usual less than 5 minutes, they had the probe down my throat for over 20 minutes. I kept coming around and would wave my hand and point to the IV, at which point they'd shoot me with more stuff to put me out again. I came around at least three times. But, honestly, the worst part is the sore throat after, and that's not so bad.

Everyone gets all excited about the cardiac catheterizations. But, again, I really don't think they are that big a deal. And, again, I asked for less sedation and was conscious through the first two, having a running conversation with the invasive cardiologists as they threaded the wires and tubes up into my heart, happily looking at my beautifully clear coronary arteries. They even let me keep my glasses on! By the third one, however, the thrill was gone and I told them to just 'snow' me. I remember the fellow waking me up and telling me they were pausing for a few minutes to get my cardiologist on the phone, because things were so bad (in regards to the pressures) that the attending didn't want to continue the cath. That was because they wanted me to exercise and check the pressures again to see how much worse they got. The second cath--first one at Brigham--they put a gizmo on the table and had me pedal to increase my heart rate. I couldn't see really well because of the draping. It was weird, because it was done while all the wires were still in my heart, so they could immediately measure the pressures post-exercise. So, lying on a table, drugged but awake, with a lot of people staring at me, pedaling away while the cardiologist had his hand clamped over all the wires coming out of my groin. (My comment was it was the most action that area of my body had gotten in a while :) , which they all laughed about.) That time the increase in pressures were the worst they had ever seen or heard of. Until the next time, when I broke my previous records. (Hey, if you're going to do something, do it all the way!) So, since my resting lung and heart pressures were all incredibly high, the invasive cardiologist doing the cath before surgery #3 didn't want to make them any higher by my exercising. But I had told them all going into the cath that I wanted absolutely horrid, wretched numbers that would leave absolutely no questioning the decision that I needed a third open-heart surgery. I wanted black and white, no grey. So, after some ego battling between my cardiologist (who is Chief of Advanced Cardiac Disease at Brigham Hospital--because when you're an interesting case you only see the top docs!) and the invasive one who was responsible for me while on the table, the compromise was that instead of bicycling I would only move my arms with two 1,000 cc IV bags in my hands. So, less exertion than the other one with worse numbers. Yeah!

Heart surgery, however, was a different story. Because I've seen so many people with really bad problems and complications. It's a lot easier to talk to people about the 2-3% chance of stroke when it's not you that will deal with the sequelae. And there is a reason for the phrase "Ignorance is Bliss", because it's really better that you don't know exactly what they are going to do in your chest after sawing you open and cranking your sternum and ribs apart by about 10 inches. And the whole stopping the heart thing is difficult on any number of levels, physical as well as psychological. And not really knowing what to expect--how does it feel? How bad is it, really? Are other patients just exaggerating? If it was that bad would they still be doing it? Knowing what was going to happen was, I believe, much, much worse than not really having a clear picture of what was going to happen.

Me being me, I asked for a copy of the TEEs done during the first surgery. What can I say? I'm a glutten for punishment. That was the surgery that they attempted three repairs, so they stopped my heart and cut it open three times. That still freaks me out. Anyway, it's several months later and I finally have the CD, so poured myself a glass of wine and popped it into the computer. I was being very good about psychologically staying in that somewhat removed clinical place until the second or third study. There was something weird before the end of the recording that didn't make sense--they forgot to shut off the recording device and the image froze on the monitor. So, just to understand, I re-played it. That's when I saw the adenosine and potassium being injected into my heart and realized that the image wasn't frozen, because the counter was still running. I was looking at myself in cardiac arrest. And folks, that is just something you really shouldn't see. Gulped down the rest of that glass. It still bothers me, although I've never looked at it again. If you are looking at yourself dead, it really needs to be accompanied by all that nice tunnel, warm light and happy fuzzy feeling. And I got none of that.

So, despite my knowing what to expect, it didn't make it any easier. In some ways it was much harder. But, it is what it is.

(Did I open that bottle of white cranberry wine that Kathy Tag got me? Or should I just go for the large 1.5 ltr bottle of Reisling? Decisions, decisions.)

Thanks for checking, Laurie