Let me tell you a little about my journey over the better part of this last decade. I have lived in congestive heart failure for almost 12 years. In that time I have been mostly able to lead a normal life. In fac,t I would go as far as to say I was more active in my life than many people that I know.
It hasn't all been peaches and cream, though. Eight years ago I was forced to leave work. I had numerous tests done and a new ICD put in due to episodes of V-Tach. During that time I found that my EF (ejection fraction) was only 15%. There was talk about the possibility of getting a transplant or maybe surgery.
I was sent to another hospital to be evaluated further. They said they didn't think I would need a transplant at that time and they wanted to discuss surgery. It turns out that wasn't an option either. They felt unless my EF was over 30% that it was too dangerous. Instead, I returned to my home hospital, where they put in a biventricular ICD. That worked well and after a year I had managed to get my EF up to 22%. After another seven years I have managed to raise my EF to 35%. I am slated to have a final cardiac cath to determine a game plan for upcoming surgery.
I was ecstatic. I was jumping for joy. I was going to have surgery and they would put in my first-ever pulmonary valve. I would be able to go back to running and hiking. A world of possibilities had opened up to me. Things were going to get fixed — HOORAY! I felt that way for the first week or so. I still feel that way sometimes, but it all came crashing down a few days ago.
My parents asked me to sit down and have a talk with them. They asked that I think about what I wanted if things should go wrong during the surgery. They asked me to think about whether I wanted to stay hooked up to machines to keep me alive if the outcome looked bleak. They pleaded with me to make out a living will before the surgery, so that they would not be forced to make those decisions.
I couldn't blame them. They had to consider those things when I was a child and had my other surgeries. It isn't really fair to put them in that position now. Besides, I have my own opinion of what I would like to happen, depending on the circumstances.
That morning and that talk is when the surgery became real for me. The seriousness of the situation finally set in and it was a little sobering, to say the least. I have worked hard to get in the position I am in now and the frightening nature of open heart surgery isn't going to persuade me not to do it. But I will be entering into it with a little more respect and a lot more humility.
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