Patient Story of Mia Smith

My Story

About Me (In My Own Words)

Born with pulmonary atresia, life hasn't always been easy for me. That being said, I have grown in many ways dealing with the multiple surgeries and other ordeals I have had. At just three weeks, I had a shunt placed in to bypass the closed valve. When I was two, I had my first open heart surgery. My surgeon went in and opened up the valve, then stitched everything back up. For years I was fine, but bit by bit I started to feel terrible. See, in reality, I had no valve. Just a flappy piece of skin that would move about without order. Whenever blood would pump through into one chamber, some would seep back in to the previous chamber. Due to this, my heart started expanding. I couldn't eat much. I was sleeping 18 hours a day. And I was still exhausted. High school drifted away and I didn't care that I was missing a whole semester. I just wanted rest. And then I knew I was dying.
Thankfully, the doctor's were able to finally realize what was going on with me. That my illness from eating wasn't due to anything stomach related, but my heart. So in 2011 I had a second open heart surgery. And for a while, I was great.
Then the altitude hit me. I started feeling exhausted all the time again. I would wake up gasping for air, and when I was awake I couldn't breathe either. The doctors couldn't pin point anything. My new cardiologist that I was set up with (old one retired) said it was all in my head. I ended up in the ER 3 times in just a months time.
So I went to California, where I am currently living. Within days my sickness was mainly gone, and I hardly ever wake up due to gasping for breath anymore. I am seeing a wonderful specialist at Stanford University, and they have already been able to diagnose everything else I have; Supreventricular Tachycardia, and yes, sleep apnea. They have not ruled out pulmonary hypertension, because it is so hard to diagnose for sure.
So for now I am just continuing on, seeing my doctors when needed and feeling much better.

I can only say that athough I've had a lot of struggle, and still deal with many issues on a day to day basis, things do get much better. So keep your head up!