My name is Nikki and I have a pacemaker

I was born a “blue baby”.

I was born with Transposition of the Great Arteries. Twenty-four hours after my birth, doctors were performing open heart surgery on me to correct the TGA.

Growing up I didn’t understand what that meant except that I was different than other kids. Instead of taking my vitamins every day I took heart medication and my yearly well child visits were to a cardiologist AND a pediatrician.  Once the TGA was corrected, I was left with a slow heartbeat. I was going to need some help from modern technology in order to correct the slow heartbeat.

I have a pacemaker. I’ve eluded to it from time to time here but I don’t think I’ve talked so intimately about it.

I’ve never known life without it.

Without the pacemaker my heart rate hovers around 50 beats per minute. A device that in the mid 1970’s was reserved for older adults and elderly people has been a part of me since I was four months old.

The congenital heart defect I was born with was common. And it was fatal. Without the help of a team of cardiologists and surgeons, there didn’t seem much hope for my survival.

I can grin and say that now because my grandfather always made it a point to tell me that I was a miracle. He was right but growing up, I didn’t see it that way.

I hated being different. I hated that nearly every choice I made growing up was weighed with whether or not it would hurt me or my pacemaker. As a young adult, I often missed doctors’ appointments on purpose. I had had my fill of doctors, surgeons, nurses, needles and electrodes and tests to last 10 lifetimes. I hated repeating my story to every new doctor I went to. I hated being their guinea pig or answering hundreds of questions simply because they never had a patient like me with a pacemaker… so young.

Most of all, I hated sitting in waiting rooms with elderly people. All of them staring at me, wondering whose granddaughter I was until I stood up and went with the nurse when my name was called.

Stress tests and EKG’s were a part of my life whether I wanted them to be or not. Though I lived with a pacemaker and never knew what life was like without it, I tried my best to forget it and pretend it wasn’t there. I wanted to be the girl who could wear a bikini without a hideous scar running down her chest or looking like Zorro had left his signature mark across my chest and abdomen. I wanted anything other than what I had.

It was lonely. I was lonely.

At one point when I was a teenager, I was approached to talk to other parents of children and also other kids who were receiving pacemakers. Because I had insight. Because I knew what it was like to live with one.

I declined. I didn’t want to share how I felt. How I felt seemed ugly and weird.

It wasn’t until I was pregnant for the first time that I became very aware that there was no escaping my condition or living with a CHD. It is as much a part of me as my eyes are brown and I had to accept it. Having your obstetrician perform hundreds of ultrasounds with every pregnancy, measuring and surveying your unborn baby’s developing heart will do that to you.

While I never experimented with a dangerous lifestyle, (nor do I now), I wasn’t as proactive with my own health as I should have been. I never asked questions from my cardiologists. I never asked questions from my parents. I never took the time to learn on my own what I could expect as I got older. It’s taken me 27 years of being an adult to begin to understand how lucky I am, to have even lived beyond my birth, let alone give birth to four children that are healthy.

I will always have a pacemaker. As I grow older, I depend on it more and more. My pacemaker is a byproduct of my congenital heart defect.

I have blogged about my niece and her heart and hinted around at my condition, even hinted around at it when I bared my boobs for Anissa too. My sister pointed out how proud my niece is to have something in common with me. She wears her scar like a badge of honor. Until my niece had her heart transplant, I’ve worn mine like a scarlet letter. I wasn’t seeing how lucky I was. I wasn’t seeing that I wasn’t the only one.

Why be candid all of the sudden?

Perhaps because deep down, aside from wanting to blog about being a mom, I’ve wanted a place to talk about having a pacemaker too. Unfortunately, when I started blogging, I didn’t see many “pacemaker blogs” out there so once again, I retreated to pretending this wasn’t me. But still. My story felt incomplete somehow.

But it is me and I really can’t tell you ABOUT ME without including that can I?

I’m finally finding that my community of people DO exist.  There are many people, younger than me and older, and my age that have a CHD, or a pacemaker, or both! There are many things that I still don’t have in common with them.

But I am not alone.

My name is Nikki and I have a pacemaker.