hi, im Stephanie.
if you have been diagnosed with a potentially life-threatening condition than you will understand what i am trying to say.
last year, june. i went into hospital because i had a cyst in my cleavage, and my right arm was purple and swollen, funny enough all the veins in my chest were showing. so the hospital looks at my cyst and decide to operate, the surgeon comes in and decides we need to do an ultra sound on my arm because he didn't think the two were connected. they did the ultra sound and they found a blood clot. i didn't really understand what a blood clot was. i didn't know it was life-threatening. i thought i was faking it somehow, it wasn't really happening.
i was having a bit of trouble breathing, i told the nurses, and they told their manager the head nurse, he wanted to look in my lung for what they said was a PE (pulmonary embolism) and the nurses wern't going to go through with it, it costs too much for the government, why look in my lung with radiation when there might not even be a clot, right? after a couple of days he had ordered me the scan, oddly enough it was there, a PE sitting in my lung, but did i hear them right when they said that it looks like a in-active clot, this means it had been there for quite some time. i had come to the conclusion that i may have had more clots than this.
the nurses and doctors couldn't understand why, they had meetings about me, brung in medical students study me because its rare for a 16 year old girl to be getting blood clots. after numerous tests and me being what felt like a pin cushion they did a test that had shown up positive, a test that ment my body wasn't producing enough coagulant, and i was growing cells that were attacking my immune system. this was antiphospholipid syndrome, from what they could tell this was not genetic, but did mean that i would have to stay in hospital for a while. as days pass i sit in the hospital and they are testing me for everything in the books, they continue to diagnose me with more things, syjrogrens syndrome, fibromylagia, and hyper-mobility syndrome. as it stands fibromylagia and hyper-mobility syndrome are very rare to have together. whilst i was in hospital they put me on warfarin, a medication that thins your blood, the funny thing about this was that my blood was actually thinner than normal and i clotted witin 2 seconds. after a month i got out of hospital, feeling fantastic. nothing can go wrong with me, im invincible, right? NO. school marks fell down, my life just crumbled really, i had and still have no energy to do much, school is getting to th point where i fall asleep on the bus on the way too anf=d from school, i fall aleep in class, or i blank out and cant hear or think of a word the teaher is saying, i get in so much pain, its so hard to move.
i am under a rhuemotoligist because they deal with auto-immune conditions like mine, she tells me that i will be on warfarin for 5 years minimum and hints at that i will be on it for life. i won't be able to carry children because it will probably kill the baby and i, high risk anyways. my doctor told me that it is hard to know what to do with me because i am such a rare case. but i am thankful for everything that i have because if i didn't have these conditions than i wouldn't be me. i am so grateful i have such a supportive family they have been incredible. and my boyfriend. i love you all.