"Your bump," said one of my pupils last week, "is really, really (deep breath) really, really, really big." She is not wrong. In fistula terms, mine is certainly huge: a bulging, pulsating, tortuous monstrosity that snakes right the way from the crook of my left arm up to my shoulder. Unfortunately, I am now so accustomed to the sight of it that I have concluded a cardigan sleeve is enough to render it invisible; I am like a child covering my eyes in the belief that when I can't see the world, the world can't see me. Consequently, I am always taken aback when people point and stare (or make insouciant comments, as the kiddies are wont to do). However, with the onset of summer and the temperature rising, disguising it under layers of clothing is becoming untenable and I can't pretend it isn't an issue anymore. I have two options: expose it and draw an array of looks that range from the mildly curious to the outright appalled, or keep my unseasonable jumper on and pass out on the tube.
Me and the kiddies at school are not the only ones who have voiced concern. When participating as a model patient in the fifth year medical exams a couple of months back, I saw Vas, one of the lovely surgeons at the hospital who has definitely performed a procedure on me in the last two years, though I can't remember which. Fortunately, experience means I don't find it too disconcerting to chat so casually with a man who has had his hands inside me whilst I was unconscious (snigger)...Aaaanyway, during a break in proceedings, he mentioned that I might want to have the fistula scanned to see whether any narrowing had occurred in the vein. As a result, pressure would have been building up, causing the three distinct bulges; the silver lining (you're reeaaaly got to want to see it) is that it could be corrected with surgery.
So, two weeks ago, I took the Monday morning off work and went to the hospital for an ultrasound. I am always disappointed by ultrasounds. Not only are they drawn out and tedious, I can never understand what I am supposed to be looking at on the screen. I arrive excited at the prospect of getting a rare glimpse at my innards and end up staring at a collection of black and pewter images that are as grainy as they are meaningless. "That's your kidney there - see it?" the technicians used to say to me (back in the days back when I had a kidney). "Mmmyyyeaa-haaa..." I'd mumble back and by which I meant, of course: abso-fucking-lutely no idea what you're pointing at. Is it the grey bit? Or the black bit? Also, they keep the rooms so dark and quiet that inevitably I end up nodding off and what with the gel that won't wipe away and the having to take your clothes off (even just for a scan of my arm - that was odd, admittedly) the whole process is mildly humiliating.
Subsequently, a week later I was booked in for an appointment in the dialysis clinic with my surgeon JT to get the results. I have know JT since I was nine: he performed my very first kidney related operation where he inserted an emergency catheter into the left side of my abdomen. For some excruciatingly embarrassing reason, when he came to visit me beforehand, he asked if I had any questions and I, having somehow got it into my naive little head that he might try out some experimental, un-patented technique, instructed him not to "do anything fancy." The look on JT's face and the deafening silence that pervaded reassured me I was probably in safe hands. Eighteen months later, JT would be charged with my mother's leg of our transplant: he punctured her lung. This is what I'm saying.
JT was very pleased to see me and spent our first five minutes asking about what I was doing, how I was enjoying said pursuits and generally waxing lyrical about how good I looked (I pretty much just let him); he seemed particularly taken with my glasses which he deemed a great style for my face and then (slightly off-piste) suggested I must wear them to distract attention away from my fistula (not what I was going for, but ok...) Finally, he turned his attention to the computer screen and brought up my ultrasound report. Now, I hate the way my fistula looks, but admittedly it has been working efficiently since the very first time it was needled. As JT scanned through the text, I found myself caught between the desire for a problem to present itself and necessitate reductive surgery, and a quite exquisite dread of having an operation and potentially damaging a fistula that was working fine in the first place. The risk, though not prohibitive, is real: as a result of surgery, 1 in 100 fistulas collapse and a neckline must be re-inserted whilst a new fistula is formed and matures. If you think a fistula scares the kiddies or puts a downer on your sex life, you should see the effect of a neckline in both instances.
The decision was mercifully taken out of my hands. "There's about 2.7 litres of blood running through it," JT began, "which sounds like a lot, but when you consider the heart pumps four...anyway, it is a lot for a fistula and this is why it has stretched." This would explain its giant proportions then. "If we leave it, it will continue to stretch and then we might be forced into taking action. It is also putting a strain on your heart." Therein lay the rub. The process of rapid fluid build up and subsequent removal that occurs during dialysis already puts quite a significant strain on the heart; ideally, you wouldn't choose to take on any more. "Though seeing as you don't smoke, drink or take drugs..." JT continued, at which point I enabled my keenly honed but little known super-power of selective hearing.
"So," he concluded, "it comes down to your decision but I'll happily go ahead with the surgery." So it was decided: at my urging JT requested the operation be set for some time in August so that I won't have to take any time off work - or, more pointedly - so that I won't have to explain why I need the time off work. At some point, before my phone rings in the middle of Phonics and I sprint out of the classroom, I shall probably have to say something.
I left the consulting room with a cacophony of thoughts crashing around in my head. I was certainly not relishing the thought of the op itself...but then who does, apart from the certifiable and the medically perverted? A whole host of questions vied for my consideration: what will I eat (not the hospital food, that's for sure)? Will they leave the surgery issue nasal-gastric tube down my throat again? Will I be able to straighten my hair...? These queries quickly got relegated to the Another Time pile and I re-trained my gaze onto more positive aspects: my fistula will be smaller. It will not disappear, but I will be able to wear a t-shirt and not feel the sense of shame that comes with dozens of sets of eyes bearing down upon you in silent bewilderment. My fistula does not just mark me out as different from all you normal, two-functioning-kidney'd folk; its appearance even makes me a freak amongst my own kind. I would have been shunned on the dialysis ward if my continence and independent mobility had not given me leverage over the other losers. But I am a simple girl and simple pleasures are enough: all I need for a sense of contentment is to feel the sun on my face, and the wind on my arm.
Me and the kiddies at school are not the only ones who have voiced concern. When participating as a model patient in the fifth year medical exams a couple of months back, I saw Vas, one of the lovely surgeons at the hospital who has definitely performed a procedure on me in the last two years, though I can't remember which. Fortunately, experience means I don't find it too disconcerting to chat so casually with a man who has had his hands inside me whilst I was unconscious (snigger)...Aaaanyway, during a break in proceedings, he mentioned that I might want to have the fistula scanned to see whether any narrowing had occurred in the vein. As a result, pressure would have been building up, causing the three distinct bulges; the silver lining (you're reeaaaly got to want to see it) is that it could be corrected with surgery.
So, two weeks ago, I took the Monday morning off work and went to the hospital for an ultrasound. I am always disappointed by ultrasounds. Not only are they drawn out and tedious, I can never understand what I am supposed to be looking at on the screen. I arrive excited at the prospect of getting a rare glimpse at my innards and end up staring at a collection of black and pewter images that are as grainy as they are meaningless. "That's your kidney there - see it?" the technicians used to say to me (back in the days back when I had a kidney). "Mmmyyyeaa-haaa..." I'd mumble back and by which I meant, of course: abso-fucking-lutely no idea what you're pointing at. Is it the grey bit? Or the black bit? Also, they keep the rooms so dark and quiet that inevitably I end up nodding off and what with the gel that won't wipe away and the having to take your clothes off (even just for a scan of my arm - that was odd, admittedly) the whole process is mildly humiliating.
Subsequently, a week later I was booked in for an appointment in the dialysis clinic with my surgeon JT to get the results. I have know JT since I was nine: he performed my very first kidney related operation where he inserted an emergency catheter into the left side of my abdomen. For some excruciatingly embarrassing reason, when he came to visit me beforehand, he asked if I had any questions and I, having somehow got it into my naive little head that he might try out some experimental, un-patented technique, instructed him not to "do anything fancy." The look on JT's face and the deafening silence that pervaded reassured me I was probably in safe hands. Eighteen months later, JT would be charged with my mother's leg of our transplant: he punctured her lung. This is what I'm saying.
JT was very pleased to see me and spent our first five minutes asking about what I was doing, how I was enjoying said pursuits and generally waxing lyrical about how good I looked (I pretty much just let him); he seemed particularly taken with my glasses which he deemed a great style for my face and then (slightly off-piste) suggested I must wear them to distract attention away from my fistula (not what I was going for, but ok...) Finally, he turned his attention to the computer screen and brought up my ultrasound report. Now, I hate the way my fistula looks, but admittedly it has been working efficiently since the very first time it was needled. As JT scanned through the text, I found myself caught between the desire for a problem to present itself and necessitate reductive surgery, and a quite exquisite dread of having an operation and potentially damaging a fistula that was working fine in the first place. The risk, though not prohibitive, is real: as a result of surgery, 1 in 100 fistulas collapse and a neckline must be re-inserted whilst a new fistula is formed and matures. If you think a fistula scares the kiddies or puts a downer on your sex life, you should see the effect of a neckline in both instances.
The decision was mercifully taken out of my hands. "There's about 2.7 litres of blood running through it," JT began, "which sounds like a lot, but when you consider the heart pumps four...anyway, it is a lot for a fistula and this is why it has stretched." This would explain its giant proportions then. "If we leave it, it will continue to stretch and then we might be forced into taking action. It is also putting a strain on your heart." Therein lay the rub. The process of rapid fluid build up and subsequent removal that occurs during dialysis already puts quite a significant strain on the heart; ideally, you wouldn't choose to take on any more. "Though seeing as you don't smoke, drink or take drugs..." JT continued, at which point I enabled my keenly honed but little known super-power of selective hearing.
"So," he concluded, "it comes down to your decision but I'll happily go ahead with the surgery." So it was decided: at my urging JT requested the operation be set for some time in August so that I won't have to take any time off work - or, more pointedly - so that I won't have to explain why I need the time off work. At some point, before my phone rings in the middle of Phonics and I sprint out of the classroom, I shall probably have to say something.
I left the consulting room with a cacophony of thoughts crashing around in my head. I was certainly not relishing the thought of the op itself...but then who does, apart from the certifiable and the medically perverted? A whole host of questions vied for my consideration: what will I eat (not the hospital food, that's for sure)? Will they leave the surgery issue nasal-gastric tube down my throat again? Will I be able to straighten my hair...? These queries quickly got relegated to the Another Time pile and I re-trained my gaze onto more positive aspects: my fistula will be smaller. It will not disappear, but I will be able to wear a t-shirt and not feel the sense of shame that comes with dozens of sets of eyes bearing down upon you in silent bewilderment. My fistula does not just mark me out as different from all you normal, two-functioning-kidney'd folk; its appearance even makes me a freak amongst my own kind. I would have been shunned on the dialysis ward if my continence and independent mobility had not given me leverage over the other losers. But I am a simple girl and simple pleasures are enough: all I need for a sense of contentment is to feel the sun on my face, and the wind on my arm.
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