When Surgery Became Real

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 fact I would go as far as to say I was more active in my life than many people who I know. It hasn’t all been peaches and cream though. 8 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 the maybe surgery.

I was sent to Boston 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 Ejection Fraction was over 30% that it was too dangerous. Instead I returned to Hartford where they put in a Bi-Ventricular ICD. That worked well and after a year I had managed to get my EF up to 22%. After another 7 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 up coming 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 where 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. My Parents 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.


About jonmrjr

I am a 40 year old survivor of Congenital Heart Defects or CHD for short. This is not another blog about how I survived a heart attack. Congenital means born with. I have lived with this my whole life, as have many others. 1 in 125 babies are born with a CHD, it is the number one birth defect in the world. World wide it kills more children than all childhood Cancers combined. This is my story and how I live with CHD. My hope is to bring awareness to this condition and inspire others to chase their dreams as I do.

Posted on March 5, 2012, in Uncategorized. Bookmark the permalink. 1 Comment.

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