Kidney Failure, Dialysis And My Fight for Normality
- Hemodialysis versus Peritoneal Dialysis
Once chronic kidney failure has been ascertained, a form of dialysis will be needed to keep you alive. As scary as this sounds, there is no reason why you cannot live a relatively normal life. My own...
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Diagnosis and the ticking clock
I was diagnosed with a nasty genetic syndrome at the age of 12. I recall my mother's tears and the ticking of a time-bomb begin to echo within the halls of my mind.
Fortunately, I was told, that the variant of the syndrome was benign. Something I find a little disconcerting today (with regards to speculating on what the Malign version entails). I lived normally, fiercely and without bowing-out. I never felt in any way different to any of my friends. I participated, excelled and spat in the eye of those few words written hastily on a sheet of paper.
The prognosis? Irreversible chronic Kidney failure. I chose to ignore it, there was little I could do to moderate the effects of the illness, and the predictably dipping curve of my test results where met with a cold, measured gaze and bland indifference more often than not.
As I approached my late teens and the advent of my 20's. I began to understand that "my time" was drawing near. There were no obvious symptoms, no drama filled hospital scenes. The only thing of note was that my blood pressure had started to climb ominously.
My appointments with my nephrologist become more frequent, the meetings longer, the tension more palpable. And yet, I felt fine. I was asked, "Do you feel tired?" To which I would dutifully respond, "Nope!".
Eleven years after my initial DNA diagnosis, events began to accelerate at an alarming pace. We visited another doctor before embarking on our yearly sea-side holiday. This particular doctor erupted in a fury when he was presented with the results of my latest scans and blood test. I learned that not only did my results warrant Hemodialysis therapy. But that the doctor was openly astonished that I wasn't crawling on the floor in exhaustion.
He said that my red blood cell count was frightening low, and that I should be in hospital. With a shake of his head and a setting of the shoulders, I was politely, but forcefully asked to remain in the hospital while my mother fetched my belongings from home.
The next few days passed in a nightmarish haze. The day after being admitted, I began to feel incredibly weak, I lost 5 litres of water in 4 days. I was so tired that sitting-down was an effort, and lying down felt like jogging. The sudden and violent onset of these symptoms struck my psyche. I felt lost and scared.
Several days later, I was told I had to undergo surgery on my arm, and that a fistula (artificially enlarged artery for dialysis treatment) would be installed. They hoped that they would not have to perform emergency surgery and install a catheter before the fistula had time to develop. Without really knowing what they meant I nodded and 11 years of anticipation, gave me a firm resolve and courage. I could take anything! This is it!
The operation was successful and only mildly discomforting. I had a few bouts of low blood pressure due to the pain medication but that was about all. With a pat on the back and an incredibly strict a-proteic diet I was sent home and asked to chose a location where I would continue my treatment with long-term Hemodialysis.
Nothing could have ever prepared me for Dialysis. I had viewed it from afar, I had seen but not understood. Dialysis is not just a treatment, it is all-enveloping. It is a lifestyle.
My first dialysis session took place in a joyful little private clinic near home. For readers who don't know what the treatment involves, I will summarize by saying that two 15-gauge needles are inserted into your arm (all the way). Your blood is filtered and carried out of your body into a machine which filters it and cleans your blood.
The insertion of the needles was surprisingly painless. The pain seemed to last a few moments than pass. The problem though, is that for three-and a half hours, these leviathans will remain inside you.
I lay back, feeling overwhelmed and shocked. I made a point in being optimistic, smiling a lot. I heard the whirring and buzzing of the machine turning on. Suddenly, I felt a weight on my chest, crushing the breath out of me. My lips began to hurt and I could feel them turning blue. The nurses and doctors around me gesturing wildly, but I couldn't hear them. A rushing in my eyes drowning all sound. The machine was turned off, and after a few nerve wracking seconds everything returned to normal. I was told that I was incompatible with the filter and had suffered an Aorta spasm. I nodded, and despite the fact that a deep, oppressive despair had set upon me. I screamed defiance within my own mind, and steeled myself. I only needed to endure, nothing more.
Life on Hemodialysis
I came to understand the mechanics of my new life. My water intake limited at 500cc a day. Anything more and I risked having anything from, a tortuous dialysis session with unpredictable blood pressure values, to death by pulmonary edema. It may seem easy to not drink. Although I assure you that when your body is not rising itself of salts, you feel like you've had 3 McDonalds meals without being able to drink a coke. It is a form of torture, reminding me of the plight of Tantalus.
My food intake was limited also. Potassium was a serious concern. I was told that bananas and apricots were tantamount to suicide. High phosphorus levels (my personal problem) could lead to bone weakening. A problem many had, it is why if you visit a dialysis clinic many people will have casts on. Creatine levels, Nitrogen, urea and more. I played the clown, juggling these values as best I could. Fighting for time, fighting to retain my health until I could have a transplant.
During the course of my odyssey, I began to do various important tests to allow me to undergo a kidney transplant. I had myself put to sleep for most, but a few humbled me in ways I had never imaged possible.
As time went by my creatine levels began to rise and my Dialysis treatments were extended to 4 hours, and began to feel more like marathons by the time they ended. They were exhausting and oftentimes painful. My blood pressure all over the place, and I began suffering from cramps and stress-related panic attacks,
I began to take prescription drugs to help me cope with the stress. Something I was I had never done.
Two-and a half years later, on a rainy unassuming Friday night, I was called by the hospital and informed that they had "a kidney". I casually agreed to undergo surgery and hung up feeling bewildered. I felt nothing, I stood staring at the wall for a good ten minutes. Phoned my mother, my friends and made my way to the hospital.
My fear and aversion to dialysis was such that the prospect that a transplant could fail and a kidney rejected never occurred to me. I couldn't wait to get it over with. I was so eager to jump on the surgical bed that my enthusiasm was misread as fear, and give a hefty dose of my usual relaxant.
After an exhausting morning filled with tests and questions, I was lead into a frigid surgery room, where I was mercifully put to sleep.
Only to awake in a sea of pain. I was semi-conscious. I could hear only voices, "Can you feel pain? Does it hurt?" I don't know if I screamed or not, but I lapsed once more into sleep as the morphine kicked in.
In all truthfulness, the stay at the hospital was almost pleasant. When you have felt thirteen years of constant decline, knowing that it can only get worse. To a situation where things can only get better. Well, needless to say you find yourself smiling, constantly. I smiled as I winced in pain, I smiled at the doctors. I smiled, and smiled some more. A smile which hasn't left my face since.
I feel eternally grateful. I have been given a new life. A beautiful new life. I am changed, I never tried to change. But I have. The simplest acts are amazing to me. To be able to drink a half-liter of water, without fearing for my life. To cave-in on occasion and to grab a McDonalds. Sleeping in, running. Things I dreamt of for years, accessible to me once more. I revel in them, taking nothing for granted.
In closing, I would add that one of the most common questions I am asked is, "What does it feel like to have someone's organ inside of you, does it bother you?". A question which has become easy for me to answer now. No, it doesn't bother me in the slightest, because this is exactly what I would want my organs to be used for as well. Call it a last wish. I hope that I can save someones life one day, and repay the debt.