Life On Death Row

Almost every month for a while now in America, my life expectancy is debated. People who don’t think I should be allowed to live because it’s “too expensive” versus others who see that I am human who maybe just maybe is worthy of living a life. You could say I feel that in my own country, I spend my life on death row. Will my disease take me, or the Government?

When I was told I had a terminal disease at eighteen years old, my invincibility had still not been worn down and I ignored my dad and doctors. “Everything will be fine” was kind of my outlook. I would magically one day get pregnant, have kids, live till I had grey hair, and always take my little teardrop shaped pills. Everything will be just fine. Until it wasn’t. I watched the election thinking, “Is my life really being threatened?” But once again, no one will vote for him, he won’t win, I’ll figure out how to get my pills…much how people thought before the holocaust and current day. “They can’t do that, it won’t happen to me.”

Early January, I felt the dull pain of not being able to catch my breath. I felt a deep pain trying to walk around and get things taken care of. I was in full-blown heart failure at twenty-four, and my heart was literally trying to stop beating. I was admitted to University of New Mexico’s ICU for almost two weeks with a cardiac output lower than 1.8 (scary numbers), as they put a tube in my heart (a central line) that would pump my medication into me twenty-four seven. While laying in my very uncomfortable bed, I was reading updates from Senators saying that people like me are “burned down houses” that there is just too much wrong to even care. It was discouraging in the least. From that moment on I would literally always be connected to a machine that had to be filled always with very expensive medication. I was artificially alive, and forever dependent on medication, pharmacies, nurses, doctors, insurance, and yes the government affects all of that. It wasn’t until recently when the words “pre-existing conditions” and “Lifetime caps” started flashing across my Facebook feed that I realized I fell into that category. That it would be okay to say “we won’t pay for it because it’s too expensive” and that it would actually be allowed. That people could post that they agree with that, yet still comment on your medical posts saying “prayers.” There was no way to hide from this, my life depended on it, and the tube poking out of the front of my chest proved it.

centralline2

Most people think us “millienals” are spoiled, and that everything should be payed for, and covered. We are ungrateful, we are selfish all because things like healthcare are considered a right. “MY MONEY MY TAXES” they scream at us. My mind literally spins in circles trying to understand the religion they beat us down with (that encourages them to help the disabled and poor) yet we are “spoiled” and have to turn to Go Fund Me anyways. I can’t understand why you wouldn’t be understanding or even grateful that your tax dollars went to someone who is truly in need. Someone who is waiting on new organs. Someone who had no choice in what is happening to them. Someone who is about to go into bankruptcy not by their actions but what their flawed body has done to them.

bills

A couple of months ago, I went to grocery shopping (about an hour drive away) and realized that the cassette that holds my medication was extremely low and I would not make it back home before it would be empty. I am not supposed to go 3-6 minutes without Veletri because my blood vessels in my lungs will shrink back down to their insignificant size and threaten my blood flow and oxygen which ultimately stresses my heart. I remember pushing the grocery cart around trying to take a deep breath only to feel resistance. There was no such thing as a deep breath but instead what felt like a fifty pound weight implanted into my chest – a literal suffocating feeling. It reminded me that until it’s time for my double lung transplant, Veletri (my IV 24/7 medication) is saving my life and allowing me to breathe.

pump

If our government decides to continue to make medical care impossible for us “worthless burned down houses” it will be people like me having their medication stopped because they won’t pay the $50,000/month anymore. Our pre existing conditions will disqualify us, or we will meet lifetime caps within months. Our central lines will be removed where we will lay in bed with no oxygen left to suffocate to death. Cancer patients will be left to die, kids will die, human beings will die in America – a country of wealth and plenty…why? Simple; greed.

If you support Donald Trump, or these new “repeal and replace” ideas, then you support mass murdering your own. They can do it. They will do it. Playing with my life, never knowing my fate or future has never been just a Facebook update, argument, or game. It’s literally deciding to plan for my future, or plan my funeral. Welcome to America 2017.

-haley.

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