Saturday, November 29, 2008

Defending Seeing The Surgeon - Too Early?

Bradley and I had a nice walk in the park this morning. My legs still felt a little like lead. It's probably just a low energy thing.

People manage their health (or don't manage it!) in all sorts of ways. I've always tried to be out in front of any potential health issues. I get regular annual checkups, and go for tests when needed no matter how "thrilling" they are. I've had a whole battery of tests related to kidney function because I have a condition called hematuria: blood in the urine. Turns out that this is something that is natural for me..."ideopathic." I've also had routine colonosopies since I had a benign polyp removed at age 50. So I'm the type of person that stays one or two steps ahead of any potential health problems.

However, the heart valve disease situation presents a new challenge for me, because the issue of when to have surgery, the "timing" is tough to determine. That's why I was so happy when my surgeon told me that he "knows when to pull the trigger." Obviously, you don't want to have surgery too soon because why risk a surgical procedure and suffer the pain if you don't have to. On the other hand, there are risks associated with waiting to have surgery to correct valve disease, including damaging the heart permanently, or even death. There's a continuum from one approach to the other; waiting vs. having the surgery. I went to see a surgeon to get help making this call.

The difficulty in assessing symptoms complicates making the call relative to when to have surgery. If a person has been diagnosed with severe AS and has fainted, been dizzy, short of breath, or has chest pain, then surgery is indicated, according the the AHA guidelines. However, in my case, what if the "numbers" are only in the moderate range (potentially severe adjusted for my size,) and I have not had any episodes of fainting or dizziness (yet,) only some chest tightness (angina) on heavy exertion and some shortness of breath when I exercise, climb a hill, or go up a flight of steps? Then the picture is murkier.

I gather that's why my surgeon has ordered a CT scan and chest get a fuller, more accurate picture of what's happening than provided by just the echos alone. The CT scan will, I believe, provide information about the aorta, the valves and the coronary arteries. So when I go back to see the surgeon on January 6, we'll be armed with a lot of information and be in a better position to make a decision about surgery. That's my hope anyway.

It's pretty clear that I will need heart valve surgery. Only the question of when remains to be settled. This is the uncertainty that anyone who has been through this will tell you is worse than the surgery itself: the waiting. I was first diagnosed with AVD almost five years ago, but only this year did things get worse. However, there's an old saying in valve patient circles: "The worse things get; the faster things get worse." Again, that's why I went to the get his take on things.

I'm sort of making a defense, I guess, of my decision to seek a surgical consultation. I could have followed the cardio's advice: "See me in a year, unless," with the unless being if I developed severe symptoms. But there's the rub. I don't want to wait until I faint...are you kidding? Or, collapse like an acquaintance did on his sofa, nauseous, grey colored, and sweaty, ending up in the ER. I'm not made that way...I want help BEFORE I get to that stage.

Also, it's extremely difficult to convey your symptoms accurately to medical personnel because you don't really know whether what you are feeling is as a result of heart valve disease, being out of shape, etc. I tried like hell to be as accurate and honest as I could when I was interviewed by the surgeon's RNP, and in my responses to the surgeon himself. I believe he knows pretty well exactly where I am on the continuum. When he gets the CT scan results he'll be able to make the call, one way or the other. If I were a betting man...well, I wouldn't bet on this either way because there are just so many uncertainties. That's the nasty situation that I'll be living with at least until January 6.

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