The open heart journey isn't just the actual surgery itself, its everything leading up to it, and everything after it. It's harder then most people even imagine or understand. And that is why I'm here, to try to help others understand. To let people see the journey from the CHDer's point of view, not just the parents. Though, not all CHDer's point of view are the same.
After I started to see a cardiologist my life got into a routine again. Wake up, pills, babysit the most adorable little boy in the world, and sleep. And on my days off, well babysitting was replaced with friends. My life was good, I thought I'd done the right thing by finding a new cardiologist and I thought I'd be fine. Even though I was still having symptoms. That was until a chilly morning sometime in late 2008 (or maybe it was 2007?).
I remember that morning pretty well, (just not dates, I'm not a dates person). I was babysitting the cutest little 1 year old boy (I called him buddy, he called me Dess). We where dancing. His favorite song was Papa Don't Preach by Kelly Osbourne. Probably not the best song for a one year old, but he loved it and we danced. We (he) danced a lot. I had to sit down and catch my breath. But I was dancing when the phone rang. I remember turning down the music and looking at my caller ID. I new instantly it was a doctors office. I assumed (never assume) it was my cardiologist, though I had no idea why she would be calling.
I answered (out of breath still) expecting to here "Hi this is Julie from Dr. Fry's office." What I got was "Hi this is Kendal from Dr. Emge's office."
This is a little of how our conversation went.
Me - "who from who's office?"
Her - "Kendal from Dr. Emge's Office, I'm calling to set up your CT scan."
Me - "My what? Who is this?"
Her - "Dr. Fry's office didn't call you? She recommended Dr. Emge take over your care. He's a pediatric cardiologist and since you have the fontan and most fontans need to be revised he is best to take care of you"
In a matter of seconds I had a new cardiologist and possibly needed another open heart surgery. I told her I need to make a call and I'd call her back. Right after I hung up of course I called Dr. Fry. Julie answered and I asked why wasn't I told? I was angry. I wanted answers. So I told her what happened and she sounded shocked. She apologized, over and over again saying she was on vacation and the other secretary was suppose to call and tell me what was going on.
After I hung up with Julie I called Kendal back and set up the CT scan. Immediately after I bundled up my buddy got in the car and drove to my moms house. (She too was shocked)
The wait for the CT appointment was hard. I kept wondering who the hell this doctor was. What was his name (I couldn't remember what she had said it was)? But it finally came. When I got there it was the normal check in fill out paper work process. I noted how small the hospital was. I hate small hospitals, they never seem capable to handle complex medical situations (like a heart defect) to me. I didn't have to wait long to go back and get my CT.
The actual CT scan didn't take long either. They injected the dye and run me through the tube. There might have been a dry run first, I honestly cant remember. They told me to take deep breaths and hold them, the normal chest CT stuff.
After I got to finally meet the cardiologist and learn his name again! I'm pretty sure that first visit we just talked. I of course asked him if I needed surgery and of course, he didn't know yet. We set up another appointment for the normal, echo and EKG and blood work, always a lot of blood work. At one point in time my white blood cell count was to low so I had to get it redone at the local lab, it wasn't fun.
After the appointment with the the EKG and echo he could say pretty confidently that I needed another open heart surgery. But he wanted a cardiac cath to see exactly how my heart was doing.
So there I was.
I went from thinking I was going to be okay one second to having a new cardiologist I had never met and possibly needing life saving surgery the next second.
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