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

Nov 15: The Monster within

It's a Saturday night. I'm home, on call. And it's time to do this. Because it needs to be done. Because so much of what came after started from the beginning. Because it might help someone else. Since the blog wasn't started until just before my second surgery, there isn't a lot except the basic medical stuff for prior to that time. So that means there isn't anything documented here about my early feelings. It would take way more time and space than I currently feel like devoting for an entire explanation. But, inquiring minds want to know: What happened when I first knew I was sick?

There is a reason this is surfacing now. There have been two friends who have been diagnosed with previously unknown heart problems in the last few months. And a patient in the office a couple weeks ago, follow-up from an ER visit. In his late 50's, pretty healthy. He was scheduled to get an echo before his stress test, and the tech came out and told me that he had really bad mitral regurgitation. When my boss, ME, went in to tell him I saw the same play of emotions over this poor guy's face that I had felt: he had no idea, it came out of left field, he comes in for a couple tests and ends up being told that he needs open heart surgery. The emotional reactions these three people had were similar. So, combine all this together and there is a pretty predictable result: Flashbacks for Laurie.

In my case, I knew I was screwed staring at the echo screen that day, seeing it at the same time ME saw it. February 16, 2004 at 2:45 pm. Most people would describe my reaction as shock: no crying, no hysterics, so calm that ME kept repeating things to me because he didn't think I understood him. Perhaps some of it was shock, but years of training in EMS taught me a lot: no emotion, just handle the current crisis. Letting yourself fall to pieces shows a lack of control and is not acceptable. And, for me, putting things in a seperate category, not exactly third person, but emotionally removed from the conversation, the diagnosis, the treatment. Questions, information, be pragmatic. But, inevitably, there comes a time when the emotion has to be dealt with.

The disbelief. This is not happening. This is a bad dream and I need to wake up. I am clearly not understanding what this doctor is telling me correctly, because there is no way he just said what I think he did. They have to be mistaken. It has to be a mistake, because this is not happening. How could this happen? How could I not know? This is my body, there is simply no way that something this serious was occuring without my knowledge. This is not happening...you get very repetative because there are only so many word variations that can get through the ginormous fog that has just settled in your brain. You always think, if not consciously, that while there is nothing and no one in this world that you can ever completely understand at least you have yourself. And then you find out that it's all been an illusion--you really don't know anything. Surprise! Fooled you!

For many, the reactions after a serious diagnosis are similar to the stages of dying: Denial, Anger, Bargaining, Depression, (and maybe)Acceptance. You get mad at your body: how could you have done this to me? How could you betray me like this? Then, you start with: OK, if I do this for you, you're going to get better and this will all go away, right? We'll go back to normal, right? And then the recognition that there is no longer a 'normal' as you have known it. Nothing, ever again, will be normal. You will never be normal.

And it's your heart. Your heart. That thing that is really, really important. It can't be. Can we make it something else, something a little less essential? (There's a lot of backtracking through those stages.) Can I trade? How about a foot or a leg or a hand or an arm or ANYTHING ELSE. Really, really not thrilled with what's behind Door #1, may I see the other choices, please?

And you want to do what? Stick probes and tubes down my throat? Thread catheters in my groin and shoot dye into my core? And then you're going to do WHAT to my chest?
YOU HAVE GOT TO BE FUCKING KIDDING ME!

And the pills. Medication every day. I'd taken pills for years: asthma meds, allergy meds, BCPs, meds to sleep occasionally. So why is it so upsetting to take another pill? It's just a pill. Except without this pill you will die. Really. Not exaggerating. But, my clinical brain says, why would anyone complain about that? Stop griping and be glad that you have something wrong with you that can be helped by a pill--a lot of people aren't that fortunate. But that isn't the reality in your brain. All the other pills may have made you feel better, but you weren't dependent on them. Then they give you a pill that you absolutely, positively have to take. Because without it you will die. And that is different. It shouldn't be, but it is. Your life now depends on that little pill (or pills) every day. And you resent it. It is the physical reminder that, no matter how good you might feel or look that day, you are sick. You aren't 'normal'. That you aren't in control. And you won't be ever, ever again.

Sounds ludicrous, doesn't it? But when you discover that the one constant in your life is no longer a constant, the mind starts to freak out. Strange thoughts start to occupy your mind as you try desperately to process what is going on: There's something wrong with my heart and I'm really, really sick and nothing is ever going to be the same again. That scary monster that used to lurk under your bed when you were a kid is back, only this time the monster is inside you and a bedtime story isn't going to make it go away.

That's enough for one sitting. Now I need to go take my rat poison--the blood thinner Coumadin. Without it I will get clots on my metal valve which will break off and cause a stroke and/or blindness and/or kidney damage. Without it I will die. The extended release Tylenol isn't an absolute, but it dulls the chest and right back pain. And, after stirring all this up, that lovely little pill that helps shut off all the thoughts bouncing around in my head. (That pill is wonderful--and, yes, always used in strict moderation.)

Hope this helps someone at some point.... Laurie

Nov 12: Ramblings of my mind

Keep meaning to spend a lot of time and give you my next deep, insightful, thought prevoking chapter. But, it's after 10 pm and I have to work tomorrow. And, of course, I'm tired. And it took me about 3 minutes to decide on the word 'chapter' as an end to that statement. Doesn't bode well. So instead, let me treat you to some of the ramblings that come to me when I'm driving along coming home. It would be a better use of commuting time to talk to some of you, but when I get tired my concentration starts to get affected, and the back roads are very twisty. If I'm at all distracted it affects my driving. Therefore, no phone calls. Instead my mind just rambles. Not totally clear to you? Here's a sample....

"Boy, I feel really out of it. This 'pump-head' stuff sucks. Being on cardiac bypass has been shown to hasten the onset of Alzheimer's. I am so screwed. My mind used to work. Now it's like an altered state of mind. Isn't an 'altered state of mind' supposed to be fun? Isn't that what all those things like LSD and crack and cocaine and all are supposed to give you? Yeah--never tried any of them. I was afraid they might do something weird to me. So, avoiding them didn't seem to keep weird away, did it? Is is too late to start? An 'altered state' sounds pretty good right about now. Have I been missing out on the good stuff for years? OK, so which one would be the best? LSD? Crack? Ecstasy? That one sounds the most appealing. But LSD is supposed to be a real hoot. So, where do you get that stuff? Could I just pick a corner in Philly? Could I just casually saunter up and 'do a deal'? And, trying to be practical, could I trust the stuff to not be cut with something really bad, like rat poison? Oh, yeah, I already take that! Of course, I'm not known for having the best luck. Luck. Not really great. Someone said to me years ago that if it wasn't for bad luck I wouldn't have any luck at all. Of course, he didn't either--died of a heart attack when he was in his 50's. Well, I beat him to the punch: HA! So, street corner in Philly. Me. No luck. I'd manage to find the one corner that narcotics was doing an undercover sting operation. So, no happy altered state and the proud new owner of a felony drug charge. And I probably wouldn't like prison. Especially since the rat poison makes me bruise so easily. OK, let's ditch that idea. Traffic sucks tonight. Boy, I feel really out of it...."

Scary, isn't it?

More later--really. It'll be good--I promise! Laurie

Nov 4: Election Night

WHAT A WONDERFUL NIGHT TO BE AN AMERICAN!!!!

Nov 3: brief survey results

The weekend was pretty busy, actually went out Friday and Saturday night, although both were pretty tame. Did a bunch of stuff which involved going back and forth between house and garage and basement, changing around clothes and winter/summer stuff. I thought there were enough breaks, but apparently not, because the crash came today. Honestly, I feel pretty shitty. Usually I don't post when feeling like this, but maybe it's needed for some balance. Despite being home from work for almost five hours, I'm still exhausted, nauseated and have a headache, which is the standard when I get overtired. The dizziness and lightheadedness passed after a few hours. This means the rest of the week will be more difficult. Recovery often takes days, not hours. And, unfortunately, I often don't know that I've done too much until it's too late. Getting short of breath was a more obvious sign. This subtle stuff isn't nearly as reliable.

Apartment still not rented, one hopeful bite, however.

Took a small survey at work today with a couple women my age, despite being fairly certain of the answers. Here's the question, directed towards women: when you shave your legs in the shower, do you rest your foot on the side of the tub or the wall? And, if so, do you notice any change in the color of the raised leg? You've probably figured out where this is going..... I've noticed it for years, never thought anything about it was strange: if you lift a leg up then it doesn't get as much circulation, so the color should change--right? Gravity and all that. In the last few years the color change is now much more dramatic: the raised leg (maybe 45 degrees?) gets rather pale and the leg I'm standing on seems to get a little darker. Especially pronounced in the toes of either foot. But, hey, I'm getting older, so circulation is going to change. But it is pretty dramatic.... And it's been worse in the last year or so.... Well, it seems that other women don't notice this color change. So, it seems to be another sign of my decreased heart function.

Is this a big deal? No. Will it change how I do things? No. But it's yet another discovery regarding something so commonplace that you never think of, but is somewhat unsettling to find out is abnormal. And how could I know that it wasn't normal? Falls into the same category as discovering that you're not supposed to see the ridges left on your legs from socks, especially after several hours, which you notice when you get up to pee (repeatedly) in the middle of the night. If that's the way it's always been, you have no way of knowing it isn't the way it is supposed to be. Which makes me feel like a stranger in my own body. How many other things am I going to discover aren't "normal"?

It's past time to go to bed. Thanks for checking, Laurie