My Malfunctioning Body Machine
For the curious, let me just explain my present condition and we’ll move on from there.
I suffer from what is called (rather hopelessly) End Stage Renal Disease (ESRD) or “Stage 5” kidney failure. My kidneys are functioning at about 15% capacity. I am not yet on any dialysis programme and the surgeries and treatments I’ve undergone lately are designed to try to preserve kidney function (perhaps even improve kidney function) in order to keep me off dialysis, inclusive of the renal diet I’m forced to suffer. I spend almost all my time trying to find something edible, but the renal “cookbook” that I’m trying to build up is still disappointingly thin. The food I’m restricted to typically has no schmecks appeal.
The symptoms of kidney failure (unknown to me at the time) began to appear just before Christmas, around the 17th of December. I developed shingles (which, precious, is not very pleasant at all). Then came restless leg syndrome (RLS) and intense itchiness of the entire skin. Next, came the edema (fluid retention) and I began gaining almost a pound of water a day, followed by severe shortness of breath along with random nerve and muscle spasms. It was pretty weird. One consequence followed logically from the other, nonetheless.
So, on 11. February, realising I was at death’s door, I went to the doctor’s. It took him only a few minutes to order me into an ambulance and off to the hospital in the big city. I was basically “disappeared” — snatched off the street. I had to spend the next few days informing people of my whereabouts.
In hospital, you put your modesty and dignity on the shelf. So, the first thing they did in emergency was strip me down and stick a catheter in my bladder to begin draining off the retained fluid. I’ve had more pleasant experiences. For the next 12 days, I was poked, prodded, tested, cut open, sealed up, cut open again, sealed up again. I was attended by five doctors, in all. I’ve had a couple of additional surgeries since, too. A friend had brought me a laptop during my first stay, and I spent much of my time musing on the contradictions of the medical system, the body as machine, the experience of the hospital and so began communicating my impressions of all this to an email distribution list of friends and relatives. I never really thought about posting any of this to The Chrysalis. Perhaps I should have, but blogging was probably the furthest thing from my mind then, as you can well understand I think.
There is still no definitive diagnosis of the reasons for the kidney failure except that, for some reason, the tubes in my body connecting the kidney to the bladder are twisted or “cork-screwed”, as the urologist put it. I’m fortunate in having one of the top 10 urologists in Canada (and a couple of nephrologists also). He told me that in his career, he’s never seen anything like that. The cause is unknown, unless it is congenital. A couple of attempts he’s made to rectify them were not successful. So, I’ve put my foot down now — no more surgeries; no more lengthy hospital stays.
I was discharged from the General Hospital on 25. Feb after a 12 day “internment”. That’s the best word for it, I think. The one joy of my time there was the occasional stroll down to the cafeteria, trailing my bloody nephrostomy bags through the halls, to get a coffee and a doughnut from the cafeteria. Coffee and doughnuts were permissible (and in fact, encouraged). Just to stroll, to walk — that was real bliss for me.
I went into the hospital at an extreme 200 lbs (normal weight is around 165-170). I left hospital at 142 lbs. I also left hospital with two hydrants (taps or valves) inserted into my back and new “channels” dug into my bladder. For some time, this “bag system” (nephrostomy system) is how I drained off retained fluids. As of last week, though, the urologist turned off the taps and gave me the order — go forth and pee! He also gave me instructions of what to do (reassemble my nephrostomy system) should things go wrong and pressure rebuild in the kidney area.
Well, it was touch and go for hours. Then, finally, “Hallelujah!”. A normal piss (albeit a bloody one). And things have been chugging along ever since. Whether or not this will result in improved kidney function will be determined after my next visits to the urologist and the nephrologist, who will analyse blood and urine and determine from the numbers if I’m still at death’s door or not.
Miles to go and appointments to keep — doctors, hospitals, bloodwork, tests, injections. That’s pretty much the routine, lately, along with studying recipes and foods and trying to find something to eat that is edible besides apple fritters, lemons, small bagels with cream cheese or ginger ale and jelly candies.
As a kidney patient, I have to avoid what I call my “three devils” — sodium, potassium, and phosphorus. This is nearly impossible, since almost all foods contain some measure of all three. So, I juggle. These are now poisons for me. Since the kidneys can no longer filter these things out, they accumulate in the blood and become poisonous. It’s a condition called “uremia”, and along with uremia, “acidemia” or “acidosis”. My blood is highly acidic. In addition, the kidneys can no longer effectively produce red blood cells, so I’m also “anemic” and my immune system is compromised.
This is the danger. It’s not so much the kidney failure that is the critical issue, but the consequences of it. That’s what one of my doctors repeated: “Consequences! Consequences! Consequences!” Consequences like cancer, heart failure, bone and tissue wastage, etc. There’s a very long list of potentially fatal but logical “consequences”.
To manage the consequences, I’m required to take about 22 pills a day. Some of these pills I take are also to manage the “consequences” of taking the other pills — the “side-effects”. But, generally, the pill regime works fairly well in controlling the symptoms of Stage 5 kidney failure. I do not have the symptoms any longer, and I feel quite well overall. All vital signs are normal; even better than normal. It sometimes seemingly baffles the nephrologists.
When I went into hospital in the city in February, it was another story. I had an image in my mind of a flickering candle, about to be snuffed out by a draft of wind. It was pretty weak. Over time, though, the image of the flame in my mind grew stronger and steadier, so I knew before the doctors did from their tests and measurements that I was stabilising.
Nonetheless, however well I actually feel now, I know that eventually my malfunctioning kidneys will, in one way or another, do me in. With that sense also comes a high degree of pleasure in the “here and now” — of just being. Walking, the touch and texture of things, the light and colours, plants and animals… all seem quite marvelous, even miraculous and magical.
When I discard and abort this malfunctioning body machine, it is these things that will be “gone”, not me.