A killer disease

I'm not sure why I'm putting this blog up. I'm sure I'll know by the time I'm done. I think there is room for hope for people and my wife, N., is a prime example of that hope.

When she was 16 years old, she was smitten by a killer disease called Budd-Chiari Syndrome. To this day, nearly 20 years later, I'm not 100% sure of the details of it, what causes it or even what it actually is. I do know it nearly killed my dear wife before we even knew we were going to date each other, much less get married a few years later.

She endured more than one major medical procedure including a massively invasive surgery wherein the doctors inserted a mylar mesio-atrial shunt (forgive my spelling if necessary) which saved her life. At the time, the doctors told her if it clotted off, she'd die within a year. It clotted off right away. That was, as I mentioned above, nearly 20 years ago.

There are better ways to solve this problem now. Ways to give a survivor much better odds of survival and a "normal" life. To their credit, they did a wonderful job of it 20 years ago. Did they get lucky? Probably. Did they have skill? Most assuredly. They deserve a great deal of credit.

I should mention their names: Dr. Ronald Busuttil of the UCLA Medical Center and Dr. Telfer Reynolds of the USC Medical Center. They saved her life. In addition, I should mention another doctor who has done amazing things with her over the last 13 years. Dr. Kenneth Horwitz. Dr. Horwitz has been willing and able and above-the-call-of-duty anxious to do everything in his power to improve her quality of life as much as possible.

These three men have been miracle workers in every sense of the term.

And yet, even they have expressed a certain degree of amazement at the steady health and progress of N. through the years. For example, she called Dr. Reynolds a few years ago, mostly just to touch base. The first words out of his mouth were, "You're still alive?" He was amazed. "I want to see you!" So, we went and saw him. I went just to meet him and during our meeting, he said, "I have a class who I'd like you to meet." Next thing you know, we're in a classroom full of med students and N. is on an exam table being poked and prodded by the students.

A curious observation worth mentioning which was evident not only in this setting but also throughout the time I've been with N. is that women doctors are brutal. When the men doctors treat her, they are gentle and considerate and compassionate. The women doctors, on the other hand, poke too hard, prod too hard, cause additional pain and have very poor bedside manners. Generally speaking, of course. There are exceptions to the rule, no doubt (although we haven't encountered any yet!)

N. and I have been married nearly 17 years. They've been wonderful and miserable. Frightening and lovely. The roller-coaster ride has been a thrill and a terror. If I have the impetus to finish this blog the way I'd like it to be, you'll see much of that through my eyes. But here's the most important thing I wish to present through all of this: Quality of life is what you make of it. It's been a lesson learned over 17 years by the example of my wife to me. It cannot be overstated.

Through these years, N. has had a positive mental attitude that puts most athletes and high-acheivers to shame. She loves life. She wishes for it to be what it is. She doesn't complain about her illness (though she seeks help without hesitation when she needs it). She knows more about her condition than most doctors. (I've seen her make references to anatomical terms and had E.R. doctors have to go look them up!)

I believe her doctors have performed amazing things with her life and given her the opportunity for fulfilment. But I also believe she's done as much to cure herself and prolong her life as anyone else who has been a part of it.

This blog, hopefully, will give that story. If you were to look at N. today, you probably would not think there was anything wrong with her. Talk to her, relate to her, do things with her, she'd seem as normal as anyone else. But the more you were to take time to be with her and befriend her, the more you'd know that she has a solidity of character rarely matched by anyone other than those of extreme accomplishment. Other people who have had major medical problems can relate somewhat, assuming they have also survived againts the odds. N. is an example of the kind of person who has had a greater hand in the quality of her own life.

--Wag--