There have been many blogs that I’ve heard about detailing the struggles of the person who writes the blog, or the details of a the struggle of a loved one. I’ve struggled much in my life medically, so I decided I would speak of my health here in my blog. I’ve always wanted to share my story with others, so what better place than here?
Well, I was born with a serious malformation in my heart, in which I only have the two left chambers of my heart and I’m missing the two right chambers. I literally have half of a heart, and that’s difficult for some people to understand. It’s hard when people say, ‘well, how are you still alive, then?’ I don’t know. Your guess is as good as mine. The children that are born with my heart condition don’t live very long, and very rarely do they grow up. Very rarely. In fact, there is only one other person in the world that I know of with my condition that grew up and lived an adult life with a wife and children. It’s also an extremely rare condition. It’s called a Hypo-Plastic Right Heart, with Pulmonary Atresia, if you’d like to read up about it.
I remember several years ago, Taylor Swift (one of my idols) wrote a song about a little boy named Ronan who died of cancer at four years old. She performed it once at an event that raised money for cancer research. I don’t have cancer, therefore it is much harder for people to understand my condition, and like I said earlier – my best guess as to why I’m alive is that God wants me here, and that I’m here for a reason. What is that reason? I’m slowly discovering it day-by-day, and I think I discovered a little bit more of it last night and today.
There are eight large wildfires that plague the State that I live in in the USA right now. Because of the nature of my condition and asthma, I don’t do well with wild fires or forest fires. One of the fires went from 500 acres to 17,000 acres overnight. To me, that’s terrifying. It’s a record for fires in 2018 in my State. So, yesterday, I was taken to the hospital an hour away (because that is the only hospital that knows how to treat my condition) by ambulance because I couldn’t breathe, and breathing was getting harder and harder. Smoke fills my lungs with fluid, and the more fluid I gain, the closer I get to pneumonia and other things that I’d rather not think about. When I was a kid, my mom would play games with me to get me to cough up the fluid in my lungs so that I wouldn’t have to stay at the hospital. We’d get plastic drinking straws and she’d crumple up a piece of paper and we’d blow it across the tabletop with the straws. It was fun, and I coughed up the fluid and healed from the damage of the smoke around me.
So, last night. I was in the resuscitation bay for over ten hours. That’s nothing to be alarmed about because they didn’t need to resuscitate me; they only had me there because that’s where the ambulance drops off. Anyway, I was there for ten hours because not only is my underlying condition (Hypo-Plasty, as they call it for short) incredibly complicated, but I’m allergic to every asthma medication out there. They had to make a decision, and while they did, I became increasingly nervous. I began to cry and for some reason I couldn’t put my finger on the cause for my tears. Only today did it come to light.
Being sent home at four in the morning with a prescription of a third of a dose of something I’m very allergic to in order to help clear my lungs and hoping the allergy isn’t going to send my heart into a deadly rhythm was something I didn’t take lightly. They need to clear my lungs…but they can only use medication that I’m allergic to. There are two very stark options: clear my lungs with medication and risk my heart going into a deadly rhythm that they may or may not be able to stop before I go into a heart attack, or let the fluid stay in my lungs and it’ll only get worse. And before you consider the doctors terrible, believe me when I say that these decisions are never made lightly. That’s why I was in the Emergency Department for ten hours, minimum, took two hours to discharge from the hospital, and then another two hours to get home and go to bed.
But here’s what I realized today: I have had a wonderful last several years where I will go to the ER and they will happily tell me nothing is wrong and I will happily go home and forget about it. But growing up was not the case. There have been times where I have been brought up to the hospital into the ER, and I’ve had a heart attack – something they call Code Blue or ‘arresting’, as in ‘Cardiac Arrest’ – right there in the room upon arrival. I’ve done it more than once. It’s sounds crude, but there’s been times where I’ve nearly drowned in the fluid in my lungs as a child because nurses and doctors and cardiologists sometimes can’t line up and figure out what to do. It’s complicated as I said. But what I realized is that I’ve had a wonderful ten or so years where nothing has seriously gone wrong, but now that I’m twenty-three…I know that for the rest of my life, these horrible things are going to happen again. I’m going to hemorrhage and bleed out my blood volume again at some point just as I did multiple times as a toddler and infant. I’m going to have other heart attacks; I’m going to have countless ambulance rides, and I’m going to have many other terrible things waiting for me. But it’s not something I fear. Why? Because I know that if I survived for this long when the maximum survival for babies like me when I was born was eight days, I’m here for a reason. I know that God is on my side, and I prayed to Him desperately last night in the ER, telling Him and begging Him to provide a way that they could figure out what to do and reach a decision, even if that decision is not a good one.
So, I stay here and write and listen to Taylor Swift and cough up the fluid as I sing her album Reputation at the top of my lungs. That’s what I’ve been prescribed to do countless times. Sing, sing, sing. The more you sing, the more air you move. The more air you move, the more you get out of your lungs and the better you become, and you heal. It’s not as cut and dry as TV would like you to believe it is.
But I don’t want this post to be completely doom and gloom. I’ve decided that whenever I meet Taylor Swift (because I’m determined to) I’m going to tell her that I got better while singing to her music. I’m going to tell her that I walked on the treadmill when I was nineteen and pulled myself out of congestive heart failure (CHF) while listening to 1989. I’m going to tell her that when I go into the Operating Room for surgery that I’ve listened to Love Story countless times as I fall asleep. And I’m going to tell her that she’s saved my life more than once, and in more than one way. Yes, I’m going to make sure she knows that.
So, as much doom and gloom as I’m going to see, it’s going to be nothing to the happiness and the hope that I can provide for others as I discuss my health and show how I survived something that is considered impossible to survive. That’s just the way I work. And I would never want it any other way.