I’m Sick

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.

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Future

I think that love is a powerful thing. I mean, look at the way it has shaped history. Love and hate seem to go in an eternal dance with one another; it is impossible to have one without the other. And there are so many different types of love; the love between friends, between mother and daughter, between siblings, and between spouses. I recently have been talking to someone I love very much about how much I want to be with him – hopefully for the rest of our lives. I’ve known him a year, and I love him. But it seems that I can’t meet him halfway in the ways that I want to. We live on opposite sides of the world, and I wish that I could meet him halfway on that, but considering that I have a serious medical condition that only one hospital can treat, I can’t leave the country right now. I wish that I could, but I can’t. I don’t know how to meet him halfway.

It’s interesting how things play out though. I mentioned God in my last post, and I know that anything and everything is possible with Him. I’m grateful that He is in my life, and I know that He will make this possible between me and the man that I love. It’s just a matter of time, prayer, and sacrifice to make a relationship work. I have seen so many terrible relationships around me; I don’t ever want to end up that unhappy. For the longest time, I didn’t believe in love. I truly didn’t. Not until I met the man I currently wish to marry.

It’s scary though, to think about the possibilities. I trust him with all my heart, but I can’t help but go back to how my own father was to my mother. It is so hard for me not to see those things in my mind as I think of my own future, and heaven forbid that I scare him off with my constant worrying and exploding into tears because of the stress of my current life. I am a strong person, but a person can only remain that way for so long. At some point you have to crack and let those emotions out.

It’s not that I’m worrying that it won’t happen – because I know that it will! However, I can’t help but worry because of the nature of my Generalized Anxiety Disorder, combined with a whole lot of other crap. Most people are very hesitant to admit they have mental illnesses, but I have to tell almost everyone I meet. I’ve been in therapy since I was a child, and I’m now an adult. I know the grind. I know the whole process of everything one has to go through when admitted to the Emergency Room because it happens more than I would like it to. I just happen to be born with an extremely rare disorder that has caused my heart to form incorrectly in the womb and I am one of the sole survivors of this condition. Not only is it unheard of, but it’s mostly 100% fatal. However, I managed to push past that and I’m one of the oldest with my condition to be alive today. It’s called a Hypoplastic Right Heart; feel free to look it up and read about it online. Though that isn’t the only thing I’m diagnosed with, it is the most severe.

So it worries me about things like marriage, traveling, and more – even though I desire to travel the world! What would I do so that I could go to different countries because I have to take fifteen different medications? How could I manage to convince people that I’m not a drug lord of some sort? What would I do if I had a heart attack, knowing that any hospital there could never treat me because my condition is so rare and unheard of? What would I do if I were to get sick while I was there, and be unable to get home? There’s so many things to consider, it can be overwhelming, circling around and around in my head until I have a full-fledged panic attack. That doesn’t help one bit.

Also, considering that doctors told my mom I would survive a week at the very most and I am now in my twenties, there is room to consider the fact that if I don’t marry the man I love now, I might not be able to later. I might get too sick. There are many things that threaten my life everyday, and it’s a miracle in and of itself that I awake each morning. Considering that I have a hard enough time breathing during the day, it’s harder to breathe at night when I’m asleep. I have damage to my lungs as well.

So…what do I do? The only thing I see as an option: move forward in my relationships, making sure that I do what I want while I’m still young, before unknown things happen that I can’t predict as I get older. It’s hard and it’s scary, but it’s my life, and I wouldn’t change it. I wouldn’t know how to live any other way. So I have to consider the most painful of things that no twenty-something should have to consider: how would I prefer to die? Die in surgery, or in a heart attack while out alone? Would I prefer to live my life to the fullest, knowing that I’ll shorten it, or should I live carefully, knowing that I’ll live longer? However, I know the answers to some of these questions. I want to live life to the fullest, even if it means living a shorter life. That means traveling when I can, regardless of the worries (unless I cannot take my medication with me under any circumstances, and if I were financially unable), and doing what I love, regardless of knowing that it endangers me. Something as simple as going to the grocery store endangers me, because although I do not have direct issues with my immune system, a simple common cold sends me to the Intensive Care Unit, or ICU for short.

I want to meet him halfway, and I will. I just need to pray on how I can do that. Things might be tough, but like I said: I will never change the way things are for a more ‘ideal’ life. This was the life I was given, therefore this is the life that I was meant to live. And if I’ve lived this long, then what’s to say I won’t live another twenty years, and be perfectly fine during that time? There is no guessing, no surety, only faith. That is where I base every single thing about my decisions: within faith in God and my Savior, Jesus Christ.

So, it’s hard and scary, but I’m in love, willing to do what I need to in order to be happy. In the process, I want to publish my books that I’ve written or am currently writing before I die. However, I don’t have the money. I just don’t. And no other publisher will accept me, so I must publish them myself. Plus, I don’t like contracts. In fact, I hate them. And I don’t use that word often.

So, get married, publish some books, and manage to make the money to fund those books, all while jumping on and off of the transplant list for both a heart and a liver. Simple, right? Not at all. Scary? Maybe. Worth it? Absolutely.