Now, since this family moved in next door, we [as two families] haven't had the greatest of relationships. In fact, they haven't won many friends in the neighbourhood. The boy and I have had our fair share of run ins. They've had parties and thrown stuff over our fence, the mother was rude, the sister was even ruder, someone even called the cops on them at one of their parties once -- such lols! But despite this rough relationship, when Mum told me that he didn't have very long left, I wanted to cry.
The boy next door has several brain tumours and over the course of the past few months the doctors haven't been able to determine what caused them nor have they been able to remove them due to their placement -- not even the revered Charlie Teo was willing to operate. Over the course of the past few months, the number of tumours has increased. He's had seizures and is unsafe dosages of anti seizure medications and been through rounds of chemotherapy -- but to no avail. He is still dying.
And I feel really, really sad. Because he hasn't lived. He's had to cram his life into the precious months he's had left. What kind of a life is that? What kind of a world is this, that 15yo's are robbed of their lives? When the human genome was discovered and coded by computer for the first time just a decade ago, scientists promised such advances in medicine. Genetic cures. Things of the future. But in that ten years, they're still so far away.
The boy next door is still dying.
I guess its kind of petty now, to feel like the world hates me when I live next door to him. All the times I wished to die. Because life is important. And you must live. Because you never know when it'll be taken away from you. You never know how much time you have left until its almost too late, or really is too late. Life is just that fragile.
What I'm about to write about next seems kind of petty below everything I've just written too. But afterall, this is my life. And these things do matter to me. And, just quietly, I want to see a kind of "justice", if you like, before its too late for me. Because its better to die on one's feet than to live on one's knees.
My parents and I were sitting in a food court this afternoon discussing my pulmonary hypertension. The check-up is looming now, just a month away. A month until I find out medically whether it's here to stay or not. Personally, it feels like it is, but the new cardiologist needs to make it official. And I will have some questions for him in the event that he does.
They told me that I was going to eventually develop pulmonary hypertension anyway because I was pre-dispositioned and the pill just "unmasked" it. They can't possibly know that. They haven't genetically tested me and I can tell you right now that my parents count recount a single incidence of pulmonary hypertension in our family. So tell me, where would I have gotten the mutated gene/s from then? No answers? Pretty much what I would have expected. So this is one of the questions Mr. Cardio will be being asked.
What it looks like, to me and me non-medically trained brain, is that they simply went too far with the pill. But you know, it wasn't suss at all that my lungs weren't coping. Because a few months off the pill set everything right, well not this time! So again, pretty much tells you that this isn't genetic. Meaning: it is the fault of the doctors, or even perhaps the fault of the companies the manufacture the pill [pending proper research into a list of official side effects].
So I've had a sit down with Google and consulted a number of articles and I have the following to report:
Bradykinin lowers blood pressure by causing blood vessel dilation. Certain enzymes are capable of breaking down bradykinin ( Angiotensin Converting Enzyme, Aminopeptidase P). Progesterone can increase the levels of Aminopeptidase P (AP-P), thereby increasing the breakdown of bradykinin, which increases the risk of developing hypertension.
That's fantastic! I go back to the doctor/s time and time again and explain to them what I'm feeling and what's happening, the my breath and is short, I labour up stairs and they look at me and say "we'll give the pill a few months of rest". And then we start it again when my breathing returns to normal and then stop it again when it goes bad. FOR FOUR AND A HALF TO FIVE YEARS. Given that hypertension also known as blood pressure is a listed side effect of the pill, you would have thought one of my many, many doctors would have thought, early on: maybe this isn't right.
But no. This time the damage was done. This time I have a permanent cough. This time any kind of physical activity stresses my lungs. This time sport is a no no. This time I'm sick.
I just feel like someone has to wear the blame. Because I did the right thing. Everything warns you to notify your doctor immediately if you are experiencing side effects. And I did that. Every time! But no one really did anything. No one really looked into it. It only even got looked into by chance. If I wasn't being investigated for having polycystic ovaries [which I don't have despite my initial diagnosis by a specialist who told me to keep taking the pill] I would still be in the above outlined cycle. Can you imagine the damage then?! Pulmonary hypertension can be fatal.
Fatal.
Life is fragile. 15yo boys are dying of brain tumours and doctors are negligent. Fantastic, isn't it.
And this week I've decided it's time to start my six months of roaccutane. I feel like if I keep putting it off then I'll never do it and the things it promises just make me so excited and I want that so bad. Something just needs to go right. But of course, roaccutane was originally developed as a chemotherapy medicine. So it's a non-specific killer or rapidly producing cells. It will dry my skin out. I will sun burn worse than ever. It could exacerbate my depression. It could make my joints worse. It could make my lungs worse. I could even screw up my brain to a whole new level. And to be honest, with my history with medications, I would not be surprised if one or more of the above occurs.
I would be utterly devastated, if it did. But I can't stop thinking about what else could possibly go wrong. I really need this one to go smoothly.
Could life be so fair while it is so fragile?
But, amongst all this despair, I've been kind enough to myself to spare the blade for five days now. 40+ marks too late.
- Sky
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