My "Typical" ACHD Checkup

What to expect at a regular visit? That is something that I've been asked before. It's what causes a lot of anxiousness for many CHDers. For me, the answer is simple—anything.

At the age of 16 is when that trend started. I went in for a regular cardiac visit and ended up in the hospital with atrial flutter. Later on, this trend would continue. After being diagnosed with ventricular tachycardia I went to meet my electrophysiologist for the first time. He suggested that I hang around and meet with a cardiologist and a pediatric cardiologist who does some adult CHD stuff.

After a thorough exam by the two of them they asked, “What are you doing this weekend?” Boom—four days in the hospital. Over the next 10 years this would happen three more times. I would go to an appointment and my magnesium or potassium would be so out of whack that they would insist I go in for a "tune-up.”

That brings us to this December 4th. I went in for a regular check up on my ICD and just like that, they found a broken wire—a broken wire that had left me without a heartbeat for several seconds while I had been asleep two days before. Needless to say, not good! Back into the hospital I go.

Of course, you have to understand how I roll in the medical world. I don't do things the easy way. The wire that had broken was run behind a Teflon ring when my tricuspid valve had been repaired. Furthermore, with the repaired valve, you can't run a wire through it. My guys at one medical center were baffled by what to do, so they put me on an ambulance and sent me to another hospital.

That hospital said there were only two fixes—either crack my chest again and sew a new wire to the outside of the right ventricle or remove my ICD, swap the left and right ventricular leads, and reinsert it. The benefit to the first solution is that the problem is fixed—downside is they have to pretty much do open heart surgery again. The benefit of the second solution is a three-inch incision. The downside is they have no idea if the fix is permanent or if the wire will continue to break down.

I opted for the smaller of the two surgeries and was out the next day. Thankfully, as difficult as my procedures seem to be, I seem to bounce back from things fairly quickly and in a couple of days I was back to my normal life. So if you really want to know what I expect when I go to a regular checkup—I try not to think about it. That way I don't have to contemplate the idea of going into the hospital again.