This is the story of a pessimist who never thought he would reach the year 2000, but finally did, at age seventy-six, after many bouts with potentially fatal diseases and close encounters with death. The story is neither high drama, nor is it blatantly self-serving, the writer hopes. It is, simply, a tale told by a survivor whose survival continues to be challenged as age takes its toll, and cumulative diseases nibble at his well being.
This story is, in its truest sense, a medical adventure.
A medical adventure
Visitors to this website who would prefer a printed and bound copy of The Nine Lives of a Pessimist: a medical adventure, may order the book directly from Thinkware Publishers (Jurgen Hesse) at #203-6020 Vine Street, Vancouver BC V6M 4A6, Canada, including a cheque or US money order for $10 plus $1.50 for shipping and handling.
"The electronic/digital text of The Nine Lives of a Pessimist is offered to readers free of charge, with the understanding that any resale and/or commercial exploitation of this copyrighted work is not in the interest of the author. Please abide."
Jürgen Joachim Hesse asserts the moral right to be identified as the author of this work.
All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publisher.
Copyright (c) Jurgen Hesse 2000
Canadian Cataloguing in Publication Data
The nine lives of a pessimist.
Previous ed. has title: Chronicle of an illness.
1. Hesse,Jurgen. 2. Kidneys-Diseases-Alternative treatment. 3. Glomerulonephritis. I. Title. II. Title: Chronicle of an illness.
RC918.G55H47 2000 616.6'12 C00-910783-5
Printed in Canada A thinkwarebook
JH June 2000
This small book is dedicated to that competent body of health professionals and practitioners who helped the author with his various illnesses during the past fifteen years. Thank you all.
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This is the story of a pessimist who never thought he would reach the year 2000, but finally did, at age seventy-six, after many bouts with potentially fatal diseases and close encounters with death. The story is neither high drama, nor is it blatantly self-serving, the writer hopes. It is, simply, a tale told by a survivor whose survival continues to be challenged as age takes its toll, and cumulative diseases nibble at his well being.
This story is, in its truest sense, a medical adventure.
The reader is invited to accompany the author on his journey of discovering the proverbial nine lives (traditionally of a cat), and how he extricated himself time and again from a near-fatal encounter with death.
The "pessimist" nomenclature of the title is somewhat inaccurate and, at best, misleading. Inaccurate, because the author's pessimism is not deeply ingrained, according to his (possibly, likely faulty) self-analysis. Pessimism is best analyzed along the lines of an analogy, told the author by his late mother, a practising industrial psychologist in her native Germany.
"Two frogs fell into a vat of milk (for contemporary, postmodern readers, add whole milk). Since neither could swim, two choices were open to them: give up or try anyway. The pessimist said to his fellow frog, 'What's the use, I'll drown anyway, so I might as well do it now.' So he sank and drowned. The other frog, obviously an optimist, said to himself: "Well, I've never believed in conventional wisdom that says that non-swimmers in deep waters must drown. So I will pretend I can survive and try my damndest; perhaps the realists who think I will drown are wrong.' He splashed and wriggled and moved all his limbs tirelessly all night until, by morning, he discovered he sat dry and alive on a pile of butter."
Moral of the story: Even if you are of a pessimistic mindset, never give up.
The author found himself, not once but many times, and according to his innate pessimistic inclination, in a predictable and potentially mortal situation-call it condition--at times. Whether external conditions aligned themselves to threaten him with death, or whether internal circumstances-i.e. his body-had deteriorated to the extent that survival seemed highly unlikely, the results were predictable. Had he given in to his innate, but somewhat faux , pessimism, his will to survive, hence to continue living, might have been fatally diminished, and the nine lives could have been cut short.
The will to live-or conversely to die-as well as the determination of the mind not to accede to exterior forces, is a powerful agent of psychosomatic disorders, as we shall see farther down.
Thus we enter the second scenario, his pessimism being a misleading moniker. How can, he suggests, pessimism cohabit with optimism? Easily, if you are of his (perhaps not so) unique predisposition. On one side is his conviction that when things go wrong, they will indubitably go wrong for him; that is contrasted with the glimmer of hope that, just maybe, he will be spared the ultimate ignominy of dying before he is ready-as if we were ever ready to die. (Circumstances of despair and hopelessness excluded.)
Every time the author was facing exitus, or the moment when he perceived an exitus to be imminent, his innate pessimism shouted into his inner ear: "Well, goodbye, cruel world, here I go into the unknown." Simultaneously, back in his mind somewhere, a tiny voice whispered into the opposite inner ear: "Hold on there, I really don't feel that it's all over. I think I will hang on for a while yet. Crazy notion, perhaps, but I feel it's not time to go yet."
How these two opposed notions can cohabit in the same mind is unclear to the author, who is not professionally trained in this difficult psychological discipline. Yet he knows with absolute certainty that they cohabit peacefully and somewhat illogically.
So, to sum up, his pessimism has been proved, by events, to be both inaccurate and misleading. He believes, with his whole energy, that his other evident disposition, cheerfulness, is superior and much more potent than a short-lived gloomy outlook that occasionally invades and dislodges his mental equilibrium. It never lasts long, and always the grin supersedes the grim face.
Not that there are no reasons to feel, at times, despondent. Here we enter into the down-to-earth scenario of a man's health, and the many assaults performed by-as it turns out-his aggressive, dysfunctional, and destructive immune system, the very system originally designed to combat and eliminate foreign and detrimental invaders in his balanced body.
The immune system is both a Yin and a Yang force. A force for good, defending the body against invading bacteria, viruses, parasites, and toxins, and ridding it of their malevolent and destructive presence. Consider, then, the shadow side of the immune system's proclivities, those of attacking-often for poorly or incompletely understood reasons-the very body it was supposed to defend and protect.
For instance, in the author's own case, why did his immune system diminish the efficacy of his pancreas, why did it curtail the production of life-saving insulin? Why, also, did the same immune system, following an apparently unrelated affliction called Henoch-Schönlein-Purpura, decide to kill the author's kidney peu à peu , over a period of fifteen years, with no quarter given and no hope for arresting the progressive renal insufficiency?
In these two cases, the immune system acted as a force of evil, if you like, no longer a pardon but an execution, so to speak. The answer eludes medical researchers to this day, as the author understands it, despite millions of hours spent trying to root out the cause and find a counterbalance.
As this is written, encouraging news abounds: New research has finally yielded a possible miracle treatment for diabetes, Types I and II (Insulin-dependent and adult-onset forms of the disease), yet the devised treatment, as stunning as its results have proved to be, does not eliminate the disease. It may perhaps eliminate the need for Insulin and medication on one hand, thus rendering the lives of diabetes-afflicted patients longer, more serene, and more liveable, but it will condemn them as well to a long life of having to take an oral medication to stave off the recurrence of the disease. So, not a cure but a much-improved treatment.
No such succour is in sight for people suffering renal failure. These patients, the author included, face a lifelong thrice-weekly session (up to four hours each at present) connected to a hæmodialysis machine, unless they can purify their blood with an alternative method called peritoneal dialysis (more about both farther down).
Not quite, though, since kidney and pancreas transplants have become commonplace and largely successful operations that restore the patient to a limited number of quasi-normal lifestyle (until the donated kidney/pancreas, almost inevitably, fail again). But even then, a transplanted kidney/diabetes patient faces a lifetime of drugs to prevent organ rejection, a preventive treatment itself replete with unpleasant and potentially troublesome side effects.
This is, as well, the continuing story of the author's major affliction, progressive kidney failure (first diagnosed in May of 1985), a.k.a. chronic renal insufficiency, a.k.a. glomerulonephritis following Henoch-Schönlein Purpura, which leads inexorably-at least at present, until a potential cure is found-to end-stage renal disease, ESRD. It is a personal case history in which the author details the various stages of the disease: from diagnosis, to refusal, finally to acceptance of the verdict, and from frantic attempts to stem the terminal aspect of kidney deterioration to the reluctant realization of its inevitability. Thus, dialysis.
The author will attempt to convey his emotional reaction to the mental straitjacket of knowing that one day he would have only three choices
These three choices, no matter which one is selected, or available (in the case of transplant), are very tough calls, as the case history will show.
The initial documentation of this case history was written in December of 1996, the first edition published in 1997. The update was written, and the second edition published, in 2000. However, this is a work in progress, as new factors enter the situation almost every month. The chronicle ends as the author has been successfully dialyzed three times a week, and has undergone a successful angiogram/angioplasty (with stenting in place); more about that farther down.
After giving his personal and medical background, the author will switch to a journal style of reporting on his illness.
This chronicle of an illness will touch on the following aspects of his kidney disease:
On the bright side: If anyone is said to living through the proverbial cat's nine lives, the author is in competition for this dubious distinction.
When an author, who is not a medical expert, writes about medical conditions and procedures, mistakes are not uncommon. The author has tried to avoid most of such occurrences, but despite some judicial checking and re-checking, some errors in terminology or medical fact will have crept into his text. Apologies to medical professionals all around.
The nine lives of a pessimist is the story of a true medical adventure as well as a chronicle of an illness, a layman's experiences, and makes no claim of being an authoritative or comprehensive professional study. As well, this account does not advocate specific treatments of any kind.
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It was not that the brand-new baby was puny; it weighed in at birth at a hefty 11 pounds. But it was born contrary and lusty at the same time. When sipping at his mother's well-filled breast, the infant at six weeks of age began to regurgitate the milk, propelling it in an ark over whoever was passing by and had the misfortune of standing in front, admiring the tot. It was getting dehydrated, and fast. So father fetched a bearded physician who suggested administering water. It also emerged at velocity. Nothing stayed down. The baby's very first life was at risk.
The physician diagnosed Magenverschlusskrampf (pyloral spasm), a term indicating an involuntary but persistent cramp at the juncture of esophagus and stomach. Remedy: clobber the site into submission by giving the baby a deadly poison, belladonna, in minute concentration, of course.
(Belladonna is either of two alkaloid drugs, atropine [which used to be prescribed in my younger days for, I believe, heart problems] or hyoscyamine. Both are obtained from the leaves and roots of the deadly nightshade. Belladonna is Italian for beautiful lady, and is supposed to refer to its use by women as a cosmetic.)
Belladonna saved my life. Now for a quantum leap forward.
The Wehrmacht doctor glanced at me, swinging his sphygmomanometer back and forth. "Hesse," he said, venom dripping from every syllable, "you're nothing but a nervous chicken." Turning to a clerk at a nearby table, he barked an order, "Make him zeitlich untauglich ." The clerk wrote in my Wehrpass, stamped it with great precision, handed it to me, and I was dismissed.
Outside the army barracks in Sonthofen I was jubilant. I was now officially classified as a nervous chicken , stamped, sealed, and delivered. Temporarily unfit to serve the fatherland for medical reasons. Clutching my armed forces passport, the Wehrpass, I did a little soft-shoe shuffle outside on the pavement. My clever ruse had worked better than I expected when I reported for the medical exam. The time was 1943, just about a year after I had been struck by a vicious case of rheumatic fever and five other medical conditions which had put me in hospital for three months starting in March of 1942. I was seventeen years old and had turned eighteen in the six-bed hospital ward in June.
How I came to be called a nervous chicken by a contemptuous armed forces physician in the Third Reich was a classic case, as I learned much later in life, of a psychosomatic event. The Bantam Medical Dictionary defines psychosomatic as "relating to or involving both the mind and body; usually applied to illnesses that are caused by the interaction of mental and physical factors. Certain physical illnesses, including asthma, eczema, and peptic ulcer, are thought to be in part a response to psychological and social stresses. Psychological treatments sometimes have a marked effect, but are usually much less effective than physical treatments for such illnesses." I could now add rheumatic fever to the list.
I was born in 1924 to a German industrialist father and a well-educated mother. After my father died from chronic nephritis-as the diagnosis was called then--in 1930, my mother became the dominant force in our family.
When the Second World War was at its height, in 1942, I was due to be drafted into the Wehrmacht . I decided to resist the draft, but the only alternatives were a) to face execution for disobeying the draft, or b) to leave Germany clandestinely. My resistance to becoming a killing soldier was instinctual, since my political or sociological or humanitarian reasoning powers were as yet woefully undeveloped. All I knew was that obeying the draft would be a fatal-of that I was dead certain-decision. Did personal cowardice, the wish to survive, play a part in my actions? It could well be argued that going along with the flow, turning soldier, was the easier route to take, although being killed in action was always a distinct possibility. Defying the call to arms was, technically and polticially, impossible: it would amount to suicide.
Young Jurgen was stuck in a moral dilemma. He could not move either way: neither obeying, nor defying.
Nature came to my aid. I developed a psychosomatic disorder that incapacitated me temporarily, rheumatic fever. In fact, it almost killed me. The fever came without warning, and I was transported in an ambulance from the small village of Blaichach to the regional hospital in nearby Sonthofen.
I was in hospital for three months in 1942 and was released with a diagnosed damage to my heart muscle (which later on cleared up). This illness, although it nearly killed me (life number two), proved to be my ultimate salvation, i.e. escape from military service.
For the purpose of this chronicle, these are the simultaneous infections which almost cost me my life: 1) acute rheumatic fever, 2) endocarditis, 3) nephritis 4) tonsillitis, and 5) otitis media.
I was very sick. The fever rose, every afternoon, to around 44 degrees Celsius (exitus occurs at 46 degrees or higher). I could no longer move my legs or arms; the rheumatic pain was excruciating. Every morning and evening the German Red Cross nurse came to slather on what looked like tar on my extremities and wrap them in cotton batting. Every touch hurt.
My endocarditis made breathing painful, and I could only breathe shallowly. My kidneys hurt abominably. My throat was on fire and made swallowing a heroic chore. On top of these painful symptoms, I endured the indignity of, at first, suffering from constipation, followed in a few days by explosive diarrhea. Getting up to go to the bathroom was out of the question. The Catholic sisters arrived with bedpans and cleaned me superficially, face (and nose) averted. I lay in my bed, unwashed, feeling filthy, exuding cloacal smells, but not giving a damn. I was delirious when the fever raged and lucid but phlegmatic the rest of the time.
I shared the ward with five other male patients, all of whom suffered from broken bones or other trifles, as I thought then, and who were in good spirits. In those days, smoking and guzzling alcohol was allowed in hospitals, and my breathing was exacerbated by the constant fug in the common ward.
After fourteen days of high fever and pain, I had lost about twenty-five pounds on an athletic but spare frame. My face was covered with bristles, and my eyes were hollow. One morning the nursing sister who measured my temperature in the rectum, another indignity, announced my fever was already at 43.5 degrees Celsius. Normally I awoke with a temperature of 38 or 38.5 degrees, the fever rising in mid-afternoon.
When my mother and favourite older sister arrived to visit me at 8 a.m., I whispered cheerfully to them: "My fever is 43! Today I am going to die!" grinning inanely. My mother panicked and went in pursuit of Dr. Karl Lohmüller who soon arrived and said something drastic had to be done to bring my fever down rapidly, and keep it down.
"We have a new experimental drug called Tibatin," he said later that day. Despite my expectations, I had not died. "I hope it will help you." It did. Where Aspirin had not succeeded, Tibatin did. Tibatin saved my life, number two. Within a day, the fever receded, then abated.
Slowly, during the first two months in hospital, all my symptoms disappeared, only the rheumatic fever had left a nasty legacy. I had lost most of my strength and could barely walk. Then, just as Dr. Lohmüller announced that I might be discharged soon, I became victim of a cross-infection. The twin afflictions of 6) infectious hepatitis and 7) icterus (jaundice) kept me bed-ridden for another month.
Later on I was to marvel at having survived seven nasty illnesses.
Finally I was released in the summer of 1942; I was one of the few young men of draft age in my Bavarian village not wearing a uniform. I was a civilian, and I was planning to remain a free man, despite that dreaded old saying Germans liked to quote: "A man is not a man unless he has been laid, got roaring drunk, and served two years in the army." I preferred to remain a sissy. I remained unlaid, had never drunk alcohol, and was content not to serve as a moribund soldier in this high-casualty war.
I would try to design my own fake-symptoms scenario to achieve exemption from military service. But what to do? How to pull it off and get away with it? This was reality, not fiction.
The idea came to me when the medical examiner in the Gebirgsjägerkaserne in Sonthofen ordered me to perform ten knee bends. I thought that here was my chance. As soon as I knew what he wanted me to do, I held my breath surreptitiously and performed my ten knee bends vigorously. The results were beyond my expectations. I felt my face go white and nearly passed out from lightheadedness. My breathing efforts were nothing short of spectacular-I wheezed and heaved, making a wonderful production of not getting enough air..
After listening to my erratic heartbeat, the physician uttered the "nervous chicken" phrase. I had exacerbated my symptoms to perfection. Subsequent examinations went with similar success until, by September 1944, I changed jobs and went to work for a company deemed essential for the (by then lost) war effort. At that time I had been classified as arbeitsverwendungsfähig , i.e. "able to work."
Psychosomatic disorders and I were to enter into a close, if undesirable, relationship. At the time, of course, the notion of such disorders was as yet scientifically unrecognized.
Today, psychosomatic disorders are widely recognized and treated accordingly. The danger of an untreated psychosomatic disorders is that, eventually, the disorder, i.e. illness, becomes a permanent fixture in a person's life.
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There followed a few typical illnesses. My regular colds and influenza attacks seemed to spread from the nose and throat (tonsillitis was a regular companion, as was a deep-bronchial racking cough, and sometimes my ears became infected with otitis media. Twice my eardrums were perforated to let the pus run out, and often my tonsils were suctioned to remove the pus in them., until my ENT (ear, nose, throat) doctor recommended tonsillectomy. That was in January of 1951.
That tonsillectomy was sheer torture, since the ENT surgeon decided to perform the operation after administering a local anæsthetic. That would have been fine with me, were I not suffering from an uncontrollable regurgitation (gagging) reflex. After he had removed one of the tonsils, with several clamps sticking out of my wide-open mouth, I had an involuntary gag reflex. The doctor scolded me, checked down my throat with a mirror and pronounced that I had managed to swallow the tampon that kept the raw wound from bleeding while he tackled the other tonsils.
"I have to go down and push the tampon into your stomach, otherwise it may stick to the esophagus," he said matter-of-factly. What that meant I was to find out very soon. He inserted a foot-long steel tube down my throat and pushed it down. I was extremely uncomfortable and almost panicked. Then he inserted a probe into my esophagus and pushed the loose tampon farther down, out of harm's way. Then he pulled out the steel tube, and I thought the worst was over. Not quite so.
The procedure had taken time, and when he was plucking, or carving, or perhaps snipping away at the second tonsil, I felt a searing pain. The anæsthetic was wearing off. Frantically, I tried to tell him about that, but one of the effects of the anæsthetic had been to give me the unpleasant illusion that my throat was closing up and I was doomed to suffocate. Panic set in when I was unable to speak. Instead, I pointed to my throat and made a desperate face. He got the message and injected some more anæsthetic. (I should mention that he operated on me without the assistance of a clinical nurse.)
The second tonsil came out easily, and the clamps were removed. I was still alive, still breathing, and was packed off to bed. Later, when I was ready to pay the bill-this was before universal medical care was introduced in postwar Germany-the doctor took pity on my rocky finances and charged me only half his usual fee. Perhaps he felt he had tortured me enough.
After that tonsillectomy at age twenty-seven, my ears never again suffered from otitis media, a most painful affliction before the introduction of antibiotic medication. I remember seeing many people with a huge hole behind one or both of their ears, where the ear canal had been chiselled open from the outside to let the pus behind the ear drum escape.
Then followed a period of relative health until after I arrived in Canada in 1958.
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In the summer of 1966 I suffered from abdominal distress and went to see a Vancouver general practitioner who, after a high white blood-cell count indicated a deceased appendix to him, suggested appendectomy. I concurred. Out with it, I thought. So he operated in St. Paul's Hospital in Vancouver. When, after being discharged a week later, I visited him in his practice, he rather sheepishly admitted that he was being ribbed by colleagues for having removed my perfectly healthy appendix. I told him not to worry, because I had always thought how unfortunate it would be to suffer from appendicitis when travelling outside Canada, and not being covered by medicare. As it turned out, I did well not to accuse him of a gross case of medical malpractice. Wait for it.
So, while this unnecessary appendectomy was a lark, as the British say with their stiff upper lip, the consequent adventures my body experienced were much less so.
I should have known when, during a 1952 visit to Tangier-I was twenty-eight years old then-I hung out in a bar and met a middle-aged man of indeterminate origin who wanted to read my palms. I let him, and what he said was that, in my mid-forties, I would suffer a brush with death. I never told him that I had already had a couple of brushes with the grim reaper. I dismissed his prediction as so much hokum.
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One year after my appendectomy in 1966, on Labour Day 1967 I had what I thought then was a minor heart attack while travelling with my wife and two children on Galiano Island, far from any medical help. There was a retired physician living on the south end (we were in the north end), who, after a frantic phone call, allowed me to visit. He prescribed sodium amytal, a tranquillizer much in use in those days, and recommended I see someone else in Vancouver.
Then followed a, in retrospect, hilarious time of wrong diagnoses and frustrations. I had deserted my appendectomy surgeon and was seeing a doctor who was a good poet, he said, and a somewhat befuddled MD, I diagnosed later. He stuffed me in a hospital bed for a whole week to find the reason for my unpleasant and frightening "heart attacks," including a high-blood-pressure test that I managed to survive. In that test, administered at the time by a leading cardiologist in Vancouver General Hospital, the chemical histamine (if I have my facts correct) is injected into a vein to raise the blood pressure to something like 300 over 200 to see how my heart would react. At best I would sail through the manipulation, at worst, I supposed, I would expire. As soon as the liquid ran into my veins, I developed an excruciating headache-he had warned me to expect it--while the cardiologist and a clinical nurse were standing by with an antidote, as he explained soothingly. No antidote was needed.
No heart dysfunction was discovered either. Then my poet/doctor sent me to a psychiatrist who used to receive disturbing phone calls during my three visits, during which he tried to reassure the caller that everything was fine between him and whoever harassed or otherwise disturbed him by calling his direct line. I wondered. This happened every time I saw him. Either he was exceedingly sexually active, or he himself was suffering from a turbulent relationship-professional or private I could not tell. (Psychiatrist heal thyself, I say.) When he suggested I explain l my sexual practices with my then wife, I demurred and did not return. I failed to see the relevance. What does a suspected heart attack have to do with whether I was po- or impotent? Or a sexual deviant? Or worse? Or a wimp? Or a bondage freak? Perhaps he ought to have consulted the mirror on his wall.
The next psychiatrist to whom I was duly sent at $50 per (at taxpayers' cost) did not receive mysterious phone calls while I visited. Trouble with him was that he said he admired me for my decision to turn my back on my troubled marriage and seek a divorce. He confided to me that he lacked the moral fibre to do likewise and escape a rotten relationship himself. I figured that Canada's taxpayers would be appalled to find that I had become a rôle model for a psychiatrist, so I fired him. Also, he had no answers for me.
My "heart" attacks continued apace, and my poet-cum-medicine-man was baffled. The worst attack occurred while I was out eating dinner with a Vancouver friend in a Los Angeles restaurant. She told me later that, during my "heart" attack I had sweated copiously and my face had turned bile green. I remained undiagnosed when I returned to Vancouver to get a better handle on my condition.
I chanced to consult my erstwhile appendectomist surgeon and GP; perhaps he had an answer. And so he did, after he kneaded my liver area and said he would send me for an X-ray to a radiologist. Result: a large obstruction the size of a peewee chicken egg was detected in my gall bladder, i.e. a gallstone. Remedy: removal, but this time, my surgeon declined and sent me to the head surgeon accredited in St. Paul's Hospital in March of 1969. I believe his name was Dr. John Gray.
My gallstone was whipped out, presto, and when I woke up in the hospital bed I felt rotten. In those days I was smoking two-and-a-half packs of filtered cigarettes a day (!), and my lungs did not like it. I developed double pneumonia on my third day of supposed recovery. Exacerbating my condition was the fact that I was back together with my then-wife on a trial basis, but that our relationship was still rocky. My will to live was rather low-leaving one's children by abandoning a marriage is not every man's manna from heaven. I felt guilt and was morose. Yet I recovered after a dramatic rescue by a resident MD who pulled out the stubborn draining tube from my abdomen after it became stuck and refused to come out easily when pulled by the nurse.
The resident gripped the end of the rubber tube with some medical pliers, or whatever, and announced that I would "experience a sharp, momentary pain," but then it would be over. So it was, and I managed to suppress a yell when he pulled the tube and yanked it free. I went home, minus the gall bladder. No more "heart" attacks after that. I wrote a vivid account of my surgery and its aftermath for The Vancouver Sun and was paid some money, either $100 or more. Blood money, so to speak.
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Around then I had my first meeting with high blood pressure, detected during a routine visit to my next medical practitioner, number seventeen, or thirty-one, or sixty-eight in a long line of MDs.
The essential hypertension. Yes, I was told by number fifteen or thereabouts, I needed a modern drug to keep it within normal range. Problem was, in the late 1960s the control of essential hypertension, high blood pressure to the layman, often did not respond to the then available medications. At least, the first pills I took didn't work. Number sixteen prescribed a somewhat more potent pill that gave me strange sensations of approaching exitus. So I stopped taking them and saw Number seventeen, a German-born compatriot and MD. "Yikes," he said, or words to that effect, "you were given a very dangerous medication."- "Yes," I replied. "I had already figured that out."
Slowly, the new man at the helm of my medical ship of health battered down the hypertension. So far, so good. But I still smoked like a chimney with a death wish.
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My smoking history is weird. Started puffing occasionally at age fourteen, quit at seventeen for about ten years, then took up pipe smoking-burned my tongue, so quit-and cigars. Trouble was, I like inhaling, and cigars are sort of deadly when inhaled. So I switched to cigarettes, anything from German cancer sticks to Gauloises and Gitanes, the macho smoke for the real he-man.
My lungs began to protest, so I tried quitting, not once but about ten or more times. I would quit cold turkey for about seven days, then that cold fist of habit deprivation would clutch my stomach area, and I would become even more impossible to live with then I am normally, being a Type-A personality. My then-wife urged me to light up, for the sake of our marriage, so I did.
This quitting and backsliding went on for a number of years until the last such events in April of 1977. I had contracted to record the sounds of, and conversations on, the soon-to-be-defunct Direct Orient Express running from Paris via Milan, Venice, Zagreb, Belgrade, Sofia, to Istanbul. Three of us went, including the producer and a research assistant/photographer. I thought, what the hell, I will quit the very day we left Vancouver for Paris by plane. I lasted until, at the CBC Paris Bureau, then correspondent Joe Schlesinger invited me to "prendre un verre du vin" with him at a nearby bistro. Above the bar I spotted numerous packages of my favourite brand of coffin nails, and nonchalantly bought one. Joe never knew I had quit cold turkey the day before. I lit up-pure bliss with a large dollop of guilt and self-loathing mixed in.
In March of 1980 I read an article in Maclean's Magazine that extolled the virtues of the brand-new Dow Chemical company-manufactured chewing gum Nicorette. I bought a package on prescription-then it was still restricted-and quit cold turkey. This time, the escape hatch was closed when, every time I felt that nicotine-deprivation's hollow fist punching me in my stomach area, I chewed a 2-milligram Nicorette and got a slight nicotine buzz.
I have since not smoked again, although until two years ago I still dreamed occasionally about lighting up. The closest I came to lose my newly-acquired tobacco-free virginity was at a social gathering when an extremely handsome female television producer let me kiss her while she exhaled her favourite brand X cigarette. Neither kiss nor passive smoke endured longer than a minute until I came to my marital senses and remembered that smoking can kill you. Especially it would me.
Today I marvel when some habitual smokers keep telling me how wonderful it feels when they enhance their smoking pleasure by chewing Nicorettes and smoking tobacco at the same time. Fools that they are. Never mind that I had been a smoking dimwit for so many years, until age fifty-five.
Today I resent second-hand smoke and tend to choke up in a room filled with cigarette smoke. These days one can get second-hand smoke outside public buildings where the poor addicted saps go in freezing cold to inhale themselves one step closer to emphysema, lung cancer, and terminal heart attack.
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Let us go media in res without fancy fanfares. My kidneys have been found wanting. Why that should be I cannot tell, nor do I wish to argue that I am not deserving of a fate worse than life, namely death by blood poisoning before the rest of my body tells me it is time to go. Death will come when the hourglass's last grain of sand has dropped to the bottom; someone else, not me, alas, will turn it upside down and begin a new life cycle.
There had been an unease at the back of my mind as I grew into maturity. My father, whom I hardly knew when he died prematurely at age forty-nine (I was six at the time), need not have died had he only had the foresight to be born a scant thirty years later than his birth date of 1881. In 1930, when he expired in a Munich clinic for people with means-he had ample means being an industrialist in Italy at the time-the blood-cleansing high-tech dialysis machine had not yet been invented. So he died.
The question that hung around my subconscious was: had I, his son Jurgen, inherited the chronic nephritis, as it was called imprecisely then? The question was not of sufficient import to precipitate a hurried and urgent visit to a physician, bullying him into a blood test for serum creatinine, nor even for a kidney biopsy which would render a definitive, albeit for all purposes, useless verdict.
Not then, not even later (the biopsy) when the kidney function was impaired and the first nephrologist I ever saw at the then Vancouver General Hospital (today renamed Vancouver Hospital, Health Sciences Centre) said I needed to prepare for kidney failure, eventually. Eventually , he said (his emphasis). Not now. Later. Years to go yet. But yes, eventually.
This nephrologist, the first of three, was a gentleman's physician, although I, his patient, was not then, nor had I ever been, a gentleman myself. He wears velvet gloves when imparting news of ill health and early death, and there is no steel fist inside them either. Soft-soaping his patient? Not telling the hard truth? I prefer to call it good pre-bedside manner. No hassle here. Yet a message of sugar-coated gloom and doom nevertheless.
I had been referred to him in June of 1979 by my general practitioner, to whom the nephrologist wrote: "The intravenous pyelogram showed bilaterally rather large kidneys," and the question of polycystic kidneys was raised.
"I arranged an ultrasound examination of his kidneys . . . which showed no evidence of polycystic kidneys. Both kidneys were visualized and were approximately 12 centimeters in length. No abnormalities were apparent. I feel that in the absence of impairment of renal function or proteinuria, the possibility of polycystic kidneys does not need to pursued further.
"The main problem will be satisfactory long-term treatment (of essential hypertension)."
So Nephrologist number one began working on controlling my blood pressure, although the dread aspect of polycystic kidneys was banned. For the next six hears he asked me to return to his practice and adjusted dosage and medications until the essential hypertension was down to near normal.
Everything would be fine today (well, perhaps, but not likely) had I not continued to visit the downtown-Vancouver CBC building at Hamilton and Georgia, a hermetically sealed concrete and glass building whose windows do not open. That's the new architectural and conventional building wisdom. Trouble is, as we all know now, that circulating bacteria and viruses attack innocent victims at random and with abandon when they enter the building at their peril in high-flu season.
I credit, or rather blame, that CBC building for what happened next. I may do them a grave injustice, but my suspicion is, at any rate, of mere academic import.
One day in late February or early March of 1985, I contracted a vicious flu bug, a virus, of course, which stayed with me for two weeks past the usual one week duration, culminating in a bronchial cough with every nasty bell and whistle that accompanies such a monster flu. Sinusitis made the event worse. Still, I recovered.
One morning in May, when I was putting on my socks, I saw several ret dots on the lily-white skin of my right foot. I thought nothing of it. Next day, there were around twenty, and on both feet. After that, they multiplied with a vengeance. I went to see my favourite dermatologist. He diagnosed purpura.
Thus entered the late doctors Henoch and Schönlein into my life, after whom the condition purpura is called. It follows a specific strain of streptococcal infection. Purpura deserves its name: masses of red blood dots cover feet, lower legs, and lower arms, although they remain subcutaneous. I contracted this purpura six weeks after that nasty, enduring cold and cough.
The dictionary defines purpura: "A skin rash resulting from bleeding into the skin from small blood vessels (capillaries); the individual purple spots of the rash are called petechiae . Purpura may be due either to defects in the capillaries or to a deficiency of blood platelet. Acute idiopathic thrombocytopneic purpura is a disease of children in which antibodies are produced that destroy the patient's platelets. The child usually recovers without treatment. See also thrombocytopenia, Schönlein-Henoch purpura." (sic)
It's actually written the other way around, such as H-S P.
"H-S purpura: a blood disease that affects young children; its cause is not known. It is characterized by a purple skin rash due to bleeding into the skin from defective capillaries; abdominal pain, arthritis in major joints, and kidney disturbance. Spontaneous recovery is the usual outcome."
Well, now. The cause of H-S purpura is not known. The dermatologist who first diagnosed my H-S purpura was intrigued that a 60-year-old man would contract it but was at a loss for reasons why. He, however, sent me on to my nephrologist because of possible after effects on my kidneys.
Here I was, 60 and more or less in good health, suffering for decades from essential hypertension, essential meaning the cause of the elevated blood pressure is not known to western medical science. Now H-S P had invaded my body, and its cause was also not known, just that often it follows a severe case of cold.
I experienced arthritic pain but no abdominal discomfort. And what about my kidneys? The serum creatinine count, after blood work had been ordered, had gone past the upper safe limit, and I was diagnosed, carefully, with a lot of supposing and without empirical proof, as developing the same condition which had killed my father: chronic nephritis.
The nephrologist suggested a kidney biopsy so he would know exactly (my emphasis) what ailed me.
"When you know, will that make a difference?"
"Will you be able to treat my kidneys and make the chronic nephritis disappear?"
So I declined. I had no need to know. I suspected I knew what was coming toward me.
Chronic nephritis is a general layman's term for glomerulonephritis, or glomerular nephritis: "Any of a group of kidney diseases involving the glomeruli, usually thought to be the result of antibody-antigen reactions that localize in the kidneys because of their filtering function.
"Acute nephritis is marked by blood in the urine and fluid and urea retention. It may be related to a recent streptococcal throat infection and usually resolves completely, with rapid return of normal kidney function. Other forms of nephritis present with chronic hæmaturia or with the nephrotic syndrome; children often eventually recover completely, but adults are more likely to progress to chronic nephritis and eventual kidney failure."
The glomerulus is the network of blood capillaries contained within the cuplike end of a nephron. It is the site of primary filtration of waste products from the blood into the kidney tubule. A nephron is the active unit of excretion in the kidney.
No doubt anymore: My kidneys were failing, back in 1985, and are failing now, as I write these lines, in 1996, soon to be 1997. They are continuing to fail in the summer of 1999, as well, as expected. It is, according to all medical histories and prognoses, a "progressive and irreversible" disease, hence called end-stage renal disease or chronic renal insufficiency.
Did I inherit the building blocks of ESRD from my father, or was the Henoch-Schönlein purpura at fault? Or was it a combination of both: hereditary kidney malfunction (enlarged kidneys, to wit), with the H-S P functioning as trigger? That is the most likely scenario. It is difficult to receive a clear answer to such questions from the experts.
Frankly, my dears, I no longer give a damn. It is immaterial what is behind my kidney failure since there is, not now, a cure for my condition.
No one to blame but my father, posthumously, were I so inclined. Or the recirculating cold viruses in the CBC building's air conditioning system.
But now for a wee diversion into other malfunctions of my poor body. Number three life is being assaulted.
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The time was 4:16 a.m. on July 26, 1991. I had been tossing and turning for an hour or more, feeling my heart beating rapidly, more rapidly than it had for years except for the occasional wee-hour-of-the-morning event, the Hour of the Wolf, if you like, when our black thoughts turn viscous and acidic. But this rapid beating was accompanied by extra systoles (ectopic beats).
"An ectopic beat is a heart beat due to an impulse generated somewhere in the heart . . . Ectopic beats are generally premature in timing; they are classified as supraventricular if they originate in the atria and ventricular if they originate in the ventricles. They may be produced by any heart disease, by nicotine from smoking, or by caffeine from excessive tea or coffee consumption; they are common in normal individuals. The patient may be unaware of their presence or may feel that his (her) heart has 'missed a beat.' Ectopic beats may be suppressed by drugs."
This time, the ectopic beats were hard, thumping events and most uncomfortable. At 4:16 a.m., as I was looking at our night clock, my heart suddenly went berserk. The beat increased to an even higher rapidity, and was irregular, almost painful. I had no clue to what was happening but knew that I had to act fast. I woke my wife and asked her to dress swiftly. I telephoned 911 and said in measured tones, not giving in to the fear of death that was gripping me: "Please send an ambulance to (my address, then a house in East Vancouver). Heart attack. No sirens please." I would not give the neighbours a spectacle in the early hours. I refused to panic and told my wife that my heart was beating irregularly.
A thought occurs as I write this. While waiting for the ambulance and its hoped-for succour-or later in the emergency room-two opposing feelings became apparent: pessimism and optimism. Fear of death, perhaps at hand, versus hope to survive against unknown odds.
First came a fire engine, then immediately a regular ambulance, a minute later an advanced life-support ambulance whose paramedic was perplexed that I was waiting for them outside the house. None of the three vehicles used its siren. I climbed into the van, my wife sat with us while the paramedic inserted a needle in the back of my left hand and connected it to an intravenous drip. My heart continued to race and skip beats. I was experiencing an acute fear of dying at any moment. Curiously, though, the fear of dying in itself was not what terrified me so much as the racing heartbeat. Go figure.
The paramedic told me my blood pressure was very high. I felt light-headed.
At the emergency room of Vancouver General Hospital nurses were already waiting. (The problem, from my perspective then, was that no treatment was started, and the ER doctor was not at my bedside. I gathered that my kind of problem necessitates first a proper diagnosis, then treatment. But I wanted the doctor to come and heal me!!!! Pronto, please.)
They took a blood sample, a portable electrocardiograph machine was wheeled in, an X-ray was taken of my chest, but still no doctor had appeared. I felt vulnerable and more angry than afraid to die, mostly because I didn't know what was wrong with my heart. So far, all the ER staff did was to investigate while I wanted them to DO something to bring my heart back to its normal beating pattern.
My wife was asked to wait outside and complied, no doubt expecting the worst. I could not reassure her because I felt so out of control. My breathing was shallow, and I had trouble remaining compos mentis , at least I felt my self-control slipping, giving way to irrational patterns of fear and despondency. My life-long habit of always expecting the worst in any situation, rather than hoping for the best-a condition known as pessimism-kicked in at full throttle. Too young to die, I thought, at age sixty-seven.
I remembered two factors as possible reasons for my heart attack, if it was that. One was that a few weeks earlier I had asked my nephrologist to take me off the 50-mg-a-day regimen of Tenormin (atenolol), a powerful betablocker which regulates heart beats and slows them down. Why? My blood pressure was doing very well, and I felt I could do without this drug. He concurred. Soon my heartbeat accelerated, and so did the incidents of ectopic beats. But I bore the slight discomfort, believing my heart rate would settle down.
The second factor, I felt, was more decisive. I had been elected to the board of directors of a credit union in 1990, and the board was undergoing a period of high acrimony. I was part of a rebel group in the credit union who wanted to democratize board practices. I had become very partisan and excited; in retrospect this was both unnecessary and ill advised. But I was embroiled in controversy, and my body, I felt, experienced a psychosomatic reaction to the stress. Another factor contributed as well: The brand-new Gulf War, which made me rather nervous, as I remembered the Second World War. The spectre of a psychosomatic reaction to these events had become all to real.
I was lying on the gurney for a time that seemed to stretch into infinity, waiting for my heart to stop beating altogether. I felt almost certain my heart could not survive the stress. I was hooked up to a monitor, and I could hear the rapid beep-beep-beep of my irregular heartbeat. For some time I had been observing the emergency room physician visiting other patients. She was a woman in her early forties, I estimated, and I heard her name on the intercom, Dr. Graham. I speculated she might have been born in Jamaica. I admired her calm, unhurried movements, her reassuring smile with which she greeted new patients.
Some time after the nurses and technicians had finished with me, Dr. Graham walked over to me, greeted me, took my right hand (the one without the needle), smiled at me, looked at the overhead monitor behind me, and said: "Oh, your heartbeat seems to have returned to normal." Or something similar. I felt and heard it as well--the slowed-down to regular and soon steady beat of my heart. Was the crisis over?
Dr. Graham, I thought, rather irrationally, had the magic touch. The very moment she took my hand, my heart went back to normal. What else could it be but a magic touch? But I said nothing, feeling grateful for having survived the attack. What did I have? I would have to wait for the cardiologist who would explain, Dr. Graham said. We talked briefly, and I asked her whether my wife could rejoin me. She assented and attended to other patients.
My wife greeted me with tears in her eyes, and I felt close to weeping myself. We talked, and I rested.
Shortly after 8 a.m. a young cardiologist came to my gurney and said I had suffered a paroxysmal atrial fibrillation event, that he would put me back on Tenormin, this time at an increased dosage of 100 mg a day, and that I needed to come to VGH again to perform a stress test to see whether my heart had sustained damage from the event. The cardiologist was reassuring. It turned out he was a specialist in atrial fibrillation events.
A paroxysm is a sudden violent attack, especially a spasm or convulsion. Atri- is a prefix denoting an atrium, especially the atrium of the heart. The atrium is either of the two upper chambers of the heart. Their muscular walls are thinner than those of the ventricle; the left atrium receives oxygenated blood from the lungs via the pulmonary vein; the right atrium receives deoxygenated blood from the venae cavae. Fibrillation is a rapid and chaotic beating of the many individual muscle fibres of the heart, which is consequently unable to maintain effective synchronous contraction. The affected part of the heart then ceases to pump blood.
Fibrillation may affect the atria or ventricles independently. Atrial fibrillation is a common type of arrhythmia and results in rapid and irregular heart and pulse rates. The main causes are atherosclerosis, chronic rheumatic heart disease, and hypertensive heart disease. It may also complicate various other conditions, including chest infection and thyroid over-activity. The heart rate is controlled by the administration of digoxin; in some cases the heart rhythm can be restored to normal by cardioversion (countershock). This is a method to restore the normal rhythm of the heart in patients with increased heart rate due to arrhythmia. A controlled direct-current shock, synchronized with the R wave of the electrocardiograph, is given through electrodes placed on the chest wall of the anaesthetized patient. The apparatus is called a cardiovertor and is a modified defibrillator.
My heartbeat had done me the courtesy of returning to normal with the aid of a hand belonging to Dr. Graham. What had she done, what was the secret of her touch? I was going to find out. But first I went through the treadmill test: no angina pectoris was detected. Not then. Then the holter test (you carry a heartbeat recorder around with you for twenty-four hours: result negative. My heart had, it seemed, escaped permanent damage. The cardiologist told me to go on with living. Welcome words.
In a few days I contacted the emergency department of VGH and asked for a meeting with Dr. Graham. She was rather suspicious about my motives. We met in a room of the emergency department at VGH, and the door was kept open. What did this sixty-seven-year-old man want from her? Well, to thank her for the magic touch. Magic touch? Come on! Did I think she had voodoo powers? She came indeed from Jamaica. We both laughed at that joke. But something happened when you touched me, Dr. Graham. She shook her head disbelievingly. What do you think happened, Mr. Hesse? We sat there, looking for an answer where none seemed to present itself.
We parted, not quite friends, one-time acquaintances only. The mystery is still unresolved, except that I suspect I know the answer, knew it all along.
As Dr. Graham was floating around that busy emergency room, dispensing calm and soothing words, she appeared to me as an, dare I say it?, as an angel of mercy. In this world one does not utter such imagery lightly, for one might be accused of dripping sentimentality or, at best, romantic claptrap. But why not an angel of mercy, even when the angel herself does not believe in her own powers of touch, that healing touch? For that it had been. Why else would my heart, fluttering like a nervous chicken-that Wehrmacht doctor, despite his crude remark, had been dead right about that-stuck in a cage with a hungry fox, decide to click back into tranquil, non-chaotic mode?
I have not had another episode of paroxysmal atrial fibrillation at this writing.
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But, as things go these days, I tell myself, no evil occurs just once or twice. It tends to occur in threes. I was not surprised, therefore, when I learned I had diabetes as well as "progressive and irreversible" kidney failure.
My nephrologist had noticed, for a number of years, borderline elevations in my blood glucose and, in November 1990, sent me to an endocrinologist at the University of British Columbia's Department of Medicine.
The blood test showed a significant elevation of blood glucose, indicating adult-onset diabetes mellitus. (My serum creatinine level, five years earlier, had hovered around 195. Exceeding high-normal levels.)
The way to control diabetes was, the endocrinologist told me, to keep my blood glucose level in check with diet and exercise. I followed his advice, and the glucose level dropped to high normal. But I was told that the diabetes mellitus Type II would not go away, and I could expect complications over the coming years.
Diabetes mellitus: "A disorder of carbohydrate metabolism in which sugars in the body are not oxidized to produce energy due to lack of the pancreatic hormone insulin or to resistance to insulin. Symptoms include thirst (sometimes raging), loss of weight" (not in my case, alas), "and excessive production of urine,"(especially during the night).
Generally, there appears to be an inherited dimension to diabetes, but in my family I was the only one afflicted. Long-term diabetes causes complications such as thickening of the arteries which can affect the eyes (diabetic retinopathy and clinically significant macular údema-more about that later) or the feet (neuropathy).
Curiously, one aspect of diabetes had always been with me, that of hypoglycemia following strenuous exercise on an empty stomach. In Germany we called it by its lay term, "Mir ist flau." Meaning, "I feel hypoglycemic." It is "a deficiency of glucose in the bloodstream, causing muscular weakness and unco-ordination, mental confusion, and sweating. If severe, it can lead to hypoglycemic coma ." When we felt flau in Germany we would wolf down some food, especially candy or sugar, and feel better within several minutes. But feeling flau , i.e. feeling hypoglycemic, as a result of insufficient intake of carbohydrates is so common that it need not necessarily be an indication of diabetes mellitus.
He turned out to be one of the best medical specialists I have encountered. A fellow gentleman to the nephrologist, the endocrinologist prepared me for the onset of my diabetes with a careful and thoughtful approach. Yet his message to me was just as devastating as that of the nephrologist: Chronic nephritis and diabetes are diseases with rather nasty consequences. At the time I was 66 years old.
I couldn't help but reflect on my longevity thus far. One hundred years ago reasonable expectation would have meant exitus for me by that age, likely earlier for lack of modern magic bullets, i.e. drugs. So why did I not take the news calmly?
I narrowed down the reasons. I am a very vital person, Type A personality, who is full of energy and is full of plans for the future. My plans centre on literature and the visual arts, not personal gain to which I had always been indifferent. I wanted to stick around for a while, especially since I had married again in 1989 and wanted to spend many years with my wife. Was I being selfish or was my will to survive two potentially fatal chronic diseases a natural instinct? I tend to believe the second reason. It is not selfish wishing to live as long as one can, provided the body is in good shape.
My body was in good shape, externally anyway. I would try to keep alive longer than medical science might predict.
Time to assess the situation and come up with a plan for surviving the odds. Few people afflicted with a disease, or two, like to go down without a strenuous fight to defeat the odds. In our parlance, we have come to describe our reaction to being diagnosed with a potentially terminal illness-be it cancer or kidney failure, or diabetes, for example-as "fighting" this or "fighting" that. Often we fight against seemingly overpowering prognoses, such as cancer, and yet, despite the best medical assessment-being given six months to live when a cancerous tumor has metastacized, for example-so-called miracle cures do occur. In the case of cancer they are called remission.
Remission, as far as we know at this current stage of research into kidney failure, does not occur in patients such as myself. We have been condemned to die by a breakdown in our immune system, and unless a brilliant medical researcher detects a way to repair the deficient immune system and restore our failing kidneys to new life, eventually we will face exitus from renal insufficiency, if we let nature take its course.
Yet, as the quote at the beginning of this story asserts, "hope springs eternal."
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Alternative medicine or, as we will learn, integrated medicine, is on the rise and, sooner or later, will be incorporated into western empirical (allopathic) medicine. At least this is my belief. Bear with me, as I guide you, the reader, through my own association with alternative medicine in my attempt to defeat my kidney failure. Here is a very short description of medical systems.
Allopathy: "The system of medicine in which the use of drugs is directed to producing effects in the body that will directly oppose and to alleviate the symptoms of a disease." Opposing and alleviating the symptoms, not the cause, of a disease. A typical case is essential hypertension which stays around, it seems, forever: Allopathic medicine is treating the symptoms, i.e. high blood pressure, by prescribing drugs which will lower the pressure artificially. But allopathic practitioners do not use alternative and/or complementary methods to eliminate essential hypertension, whatever the cause. Many allopathic practitioners are reluctant to practise integrated medicine, a term I first encountered in Mexico: medicina integrada.
Integrated medicine: In Germany, as well, the practice of integrated medicine is on the rise. One example: My older half-sister and her husband, both living in Germany, had trouble with bowel movements; they were always constipated. For some twenty years they drank a German tea infusion whose major ingredient was a herb, senna, well known to facilitate bowel movement Unfortunately it also was a major contributing factor-because it is a potent irritant to the stomach, the duodenum, and the colon-to both of them contracting cancer of the colon.
From her mother my half-sister had learned of Rudolf Steiner's philosophy of anthroposophy and its adjunct practice of alternative medicine. One potent remedy for cancer is the now famous homúopathic preparation called Iscador, made from mistletoe. The cancer patient injects him/herself regularly with this liquid to prevent recurrence. My sister and her husband underwent colostomies some twenty-five years ago. Since then, my sister has been administering Iscador to prevent the cancer from recurring. It worked.
Surgery: This is an ancillary branch of allopathic medicine "that treats injuries, deformities, or disease by operation or manipulation." There is life-saving surgery, with which most of us can agree, and elective surgery, which is not absolutely necessary, such as corrective surgery (for example plastic).
Anthroposophy: "The spiritual and mystical teachings of Rudolf Steiner, based on the belief that creative activities such as myth-making, which formed the part of life in earlier times, are psychologically valuable, especially for educational and therapeutic purposes."
There is a certain correlation between anthroposophical infusions and homeopathic remedies; both remedies are based on infinitesimal dilution of potent agents which, in full strength, would be harmful to patient. In minute diffusions they are said to cure. This is hotly contested by most allopathic practitioners.
Homeopathy: "A system of medicine based on the theory that 'like cures like.' The patient is treated with extremely small quantities of drugs that are themselves capable of producing symptoms of his particular disease. The system was founded by Samuel Hahnemann (1755-1843) at the end of the 18th century in Germany and is followed by a minority of doctors."
The Bantam Medical Dictionary is clearly a product of allopathic thinking, so its conclusions must be taken with a certain caution. To wit:
Fringe medicine: "The various systems of healing that are not regarded as part of orthodox treatment by the" (western empirical, i.e. allopathic, medicine, ed.) "medical profession. Some of these are based on theories that coincide to some extent with more orthodox medical ideas; others are based on ideas that bear no relation to standard medicine. Among the more reputable systems of fringe medicine are acupuncture, homeopathy, naturopathy, and chiropractic." Fringe medicine is a somewhat derogatory term. Most often the word "fringe" is replaced by "alternative," signifying that these branches of medicine are not on the fringe, i.e. slightly loopy, but others means by which we treat our bodies and minds.
Acupuncture: "A traditional Chinese system of healing in which symptoms are relieved by thin metal needles inserted into selected points beneath the skin. The needles are stimulated either by rotation or, more recently, by an electric current. Recent hypotheses suggest that the needling activates deep sensory nerves, which cause the pituitary and midbrain to release endorphins, the brain's natural painkillers. Acupuncture is widely used in the Far East for the relief of pain and in China itself has become an alternative to anæsthesia for some major operations. Acupuncturists in the West may be medically qualified but many are not."
I can attest to the efficacy of acupuncture when I visited a Vancouver pain clinic. For several years walking had become a painful exercise. After 15 or 20 minutes of brisk walking, my feet would begin to hurt and display symptoms of "pins and needles." I would have to rest frequently. The acupuncturist-the event goes back to 1980-inserted a number of electrically charged needles at various points in my legs; unerringly he found muscles or tendons that had hardened, and his needle would hurt going in. For up to three days, he promised me, I would feel as if a mule had kicked me. True enough. But then, slowly, the walking aches and pains disappeared and have not returned.
Naturopathy: "A system of medicine that relies upon the use of only 'natural' substances for the treatment of disease, rather than drugs. Herbs, food grown without artificial fertilizers and prepared without the use of preservatives or cooking material, pure water, sunlight, and fresh air are all used in an effort to rid the body of 'unnatural' substances, which are said to be at the root of most illnesses."
I remember with a certain glee those immediate postwar days, weeks, and months when my mother and two of my sisters would practise the methods of a German fresh-air advocate named Just (pronounced Yoost). Early every morning, my mother, or a sister, would issue a stentorian warning: "Jurgen, stay inside your room, we are Justing (yoosting)!" Not wanting to be called a sexual deviate, I stayed in my room for the half hour or so until the three women had run around stark naked in fresh air, windows wide open, summers or winters. The practice eventually fell prey to disuse, much to my fully-clothed relief.
Spontaneous healing: This is not, of course, a medical treatment but the result of mysterious healing forces resident in the body, triggered by emotional events too complex to describe in accurate detail. I suggest readers of this booklet turn to the book by Dr. Andrew Weil, Spontaneous Healing; he is a pioneer of integrated medicine without carrying that, as yet, unrecognized label. His basic premise is this: "How to discover and enhance your body's natural ability to maintain and heal itself." His suggested remedies sound good, but in my own case they did not apply.
One of my major concerns whenever I contemplate visiting a medical doctor, a homeopath, a naturopath, or any of a number of alternative medical practitioners (fringe practitioners?) is when, after the initial visit, I am asked to return for a follow-up treatment. Are the follow-up visits really warranted or am I, or is the taxpayer who contributes to the universal medical care system we enjoy in Canada, being fleeced?
Visits to orthodox medical practitioners are free under universal health care in Canada. I have a gold Pharmacare card (after retirement age, prescription drugs are free). But when I consult an alternative medical practitioner I have to pay: part of the visit is recompensed by the B.C. Medical Services Plan. What costs more than the visits are the various infusions or remedies patients are prescribed, and which are usually sold right in the herbalist's, naturopath's, or homeopath's office.
Another concern is even more valid: How qualified are these alternative medical practitioners? Will they be able to help me? Is their training solid? Are they trustworthy? Or do they engage in hocus-pocus practices which have become all too common in these days of New Age healing trends? My own attitude has undergone a change. More about that later.
The New Age movement: Most of these practices-you can read up on them when you leaf through their monthly bible, the Vancouver-published New Age magazine Common Ground-are based on traditional ethnic folk medicine. Some appear to be more ludicrous than others, but all practitioners reach deep into your pocket for a part of your disposable income.
That is the, mostly physical, aspect of this New Age phenomenon. It goes hand in hand with the spiritual aspect of tapping into your psyche and make you a better person physically and mentally, well adjusted and better able to cope with life's vicissitudes.
But I am getting off my topic here. It is necessary to mention all these genuine or phony alternative ways to achieving or regaining your health, but be careful what you choose. I have a built-in bullshit detector system which seems to work, most often anyway. Translated it means that I use a large portion of doubt before embracing an alternative method of healing. Word of mouth from people whose judgment you trust is one way to go.
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Being an unrepentant Type A person given to panic, usually followed by reflection, insight, and finally stoic acceptance, I was in one of my mild panic phases when my serum creatinine level climbed to well past 200 at the end of 1994. Since I had been visiting Mexico many times since 1958 and had married a Mexican national in November of 1989, I was well acquainted with the Mexicans' predilection toward alternative medicine.
So when we arrived in a large city in central Mexico early in December of 1994, I decided to consult a local doctor who had been trained in western empirical medicine but had then decided to forego orthodox medicine and practise instead alternative medicine. He uses several approaches to restoring good health in his patients. His first words, after my anxious enquiry of whether he would be able to help me with my kidney problems, was: "I can cure you." Not perhaps, but yes, absolutely. I took that with a large dose of sodium phosphate.
Just think. Someone with good credentials in allopathic and naturopathic medicines promises you a complete cure from kidney failure. I wished I could have believed his prediction. Now there is a circulus vitiosus whenever you encounter alternative practitioners. One of the absolute requisites before being treated successfully, they all stipulate, is that you believe a cure is possible. Without such total faith in the efficacy of alternative, i.e. integrated, medicine, the remedies are supposedly doomed to fail.
That dictum has always struck me as a vicious circle. Unless you believe in alternative medicine , you will not be cured. Of course there is a solid core to this dictum. It is related to psychosomatic disorders. You become a victim of stress, an obsession, a specific fear. My English dictionary defines psychosomatic: "adj. of or relating to disorders, such as stomach ulcers, thought to be caused or aggravated by psychological factors such as stress." (The dictionary is the 1979 edition, thus does not contain the latest information.) Psychosomatic disorders, as shown in my own case history, range far wider than stomach ulcers. I believe it is generally assumed that such disorders affect the weakest part of a person's metabolism, or autoimmune system, when stress factors occur.
Ergo, if we believe with complete absence of doubt in a cure , sometimes such a cure may work. In my own case, I cannot bring myself to still the voice of doubt-it is too strong and resists the introduction of irrational faith in what is sometimes described as a healing miracle. Born a skeptic, I suppose.
I showed the Mexican naturopath my clinical test results from Canada, but Dr. C. said he would rather diagnose my problems with iridology by peering closely into my eyes with the help of a magnifying glass. Hocus-pocus? Despite my misgivings and disbelief, I let him proceed. He examined my eyes using a magnifying glass without additional light source. That done, he sat down at his notebook computer and tapped out his diagnosis. After a while he printed out six sheets of paper which contained his diagnosis and recommendations. Following I paraphrase the most salient points:
He believed that my glomerulonephritis-these days I prefer the term chronic renal insufficency, it is self-explanatory--had its origin in my digestive system. That was news to me. I remained skeptical but said nothing to challenge his diagnosis. He prescribed a daily application of healing soil (which is readily available in health food stores all over Mexico) in form of a thick paste slapped on several sheets of newspapers, then transferred onto my abdomen, mud-side first. (The cold shock made me gasp.) Then I was to use an old bed sheet and wrap it tightly around my midriff. I was allowed to walk around but found movement rather restricted and chose to lie in bed reading for two hours.
Getting rid of the mud on my hairy abdomen proved rather tricky. The thin layer of mud had dried, leaving my abundant body hair encrusted. I stood in the shower and rinsed off the remaining pieces after prying most of the mud off with my finger and uttering frequent "ouches." That was the mud treatment. Did it work? Wait.
In the mornings I had to rub the juice of several limes, which are plentiful and cheap in Mexico, all over the body and rinse it off with cold water. Twice a day, at 11 a.m. and 5 p.m., I was asked to drink the juice of two or three limes in a glass of water, unsweetened. Good source of vitamin C.
He prescribed one of two options: an infusion (tea) made from six herbs, or a concoction made from wheat bran, flax seed, raisins, sunflower seed, and sesame seed, prepared the evening before with hot water.
I was also prescribed three homeopathic remedies. The diet was rigorous and consisted only of vegetarian meals. Twice during one month I was asked to take a powerful laxative made from magnesium (a white powder), followed by a day of only eating fruit.
Finally, Dr. C. suggested I walk barefoot on wet grass for ten or fifteen minutes a day. Really, I thought, that was a little too much for my credulity.
This strict régime left little time to do anything else, and I had to live by the clock to maintain the disciplines foisted upon me for reasons of good health and, supposedly, the promised state of eternal bliss, a complete cure from kidney failure .
Before going to Mexico, my wife and I had been drinking a vegetable broth (discarding the vegetables after boiling them for twenty minutes), in Mexico called caldo desintoxicante , or detoxifying broth. It had a dramatic effect on my weight, I lost ten pounds in a month. But was it the broth or my general dietary regimen of eating less?
All this began on December 14, 1994, and carried on for a month. I had my serum creatinine level tested locally after a month and was ecstatic to find it had dropped to 160 from 224 two months earlier. Was I finally on the road to being cured?
Dr. C. saw me again and recommended that, after returning to Canada, I should continue with the diet. After consulting my irises he pronounced me cured, saying that my kidneys showed a serum creatinine level of "high normal." Ho-hum or hallelujah? I chose the ho-hum, and I was proved right.
Had he cured me? No. The remission in my kidney function-if that was what it was--turned out to be temporary and, in March, the serum creatinine level had again risen to 220.
Was Dr. C., then, a charlatan? I cannot say, although I was right in questioning his cocky optimism at the time. I cannot believe that restoring kidneys to their full function is as easy as he made it sound, although I cannot deny the temporary efficacy of his treatment at the time, although it seemed a little drastic with all its regimentation. Perhaps the Mexican laboratory's creatinine count had been flawed.
Mexico is a country where integrated medicine is closer to becoming accepted than it is in North America. One reason is the Mexicans' strong experience of, and allegiance to, natural remedies, folk medicine, the widespread use of curanderos and curanderas, i.e. male and female healers.
Stories abound of miracle cures in Mexico, stories of spontaneous healing, unexplained but generally accepted. Mexicans in general are strong on faith and the belief that intercessionary prayer will help the natural healing process of the body.
When health is discussed in family circles, everybody seems to have a relative or a friend who has witnessed and has benefitted from a magic potion, a herb, or a host of other methods for restoring good health. True or not, as these stories may turn out on closer investigation, Mexicans delight in suggesting ways and means through which you can become healthy again. This is one of the most charming and delightful aspects of their culture.
Not that all Mexicans believe in the beneficial aspects of, for instance, a strict vegetarian diet, or cutting out their preference for foods rich in white, refined sugar. Far from it. The American influence and predilection for prepared and fast foods with all its consequences of high cholesterol levels and dire results has made powerful inroads in the Mexicans' eating habits. There is, however, a large substratum of people in Mexico who eat healthy diets simply because they lack the money for hamburgers, French fries, boxed cereals, and other junk food. Mexican poor peasants, called campesinos , often have to subsist on a diet of corn tortillas, refried beans, corn on the cob, and vegetables and fruit, most of which are plentiful and cheap.
How do these people maintain their health under the dire circumstances of poverty? One secret seems to be their attitude to life. When you visit the poor campesinos, as well as some working-class and middle-class Mexicans, more often than not you will find them contented, coping with their lives with aplomb and confidence. Many shrug off the misfortunes of a decline in their real income (especially after the peso was devalued so drastically in December of 1994 and has since created widespread unemployment, economic downturn).
This positive attitude in the face of calamitous economic problems is a useful antidote to despair and, in its wake, the inevitable string of life-threatening illnesses which so often beset us. We in the north seem more inclined toward a pessimistic outlook.
Should we, could we, emulate this positive attitude of the economically strapped Mexicans? It would be beneficial if we could. Some of us change our ways of life and lifestyle and survive seemingly insurmountable odds when we fall seriously ill.
My Mexican experiment, then, was ultimately a failure. What I retained, though, was my preference for eating vegetarian foods, but including eggs and dairy products. That decision has stood me in good stead, I feel.
However, as one's health changes from well to less well, our previous convictions can be overturned by events. My vegetarianism has undergone a drastic revision after I went on dialysis. Story to come.
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One of the curious aspects of having a malfunctioning kidney (glomerulonephritis or chronic renal insufficiency) is that its serum creatinine level keeps fluctuating. It tends to increase overall, but occasionally it goes into temporary remission, or rather it remains at a certain level for months at a time. Then suddenly it will increase by forty or fifty points, and so forth. This pattern is evident from my chart farther down. What does it mean?
Why does our immune system break down and lets our kidneys deteriorate until they quit altogether? And why can no one, so far, halt this process and find a cure?
I am told that medical science is still baffled as to why kidneys fail, and why the pancreas fails to produce insulin, thus causing diabetes. They know what happens, but not yet why. The answers still need to be found. The latest breakthrough is a one-in-a-lifetime tablet to be taken to stop diabetes entirely. It is not yet available, as of this writing, but it seems that sooner or later the need to endure diabetes will be over. That is, unless I misread the article in the newspaper.
Undoubtedly, sooner or later as well, a cure for kidney failure may be found as well. As I edit these lines, in June of 2000, the hope for, not a cure, but a bypass solution, seems to shift closer to reality. More about those developments farther down.
The three nephrologists I have so far consulted say they have no idea why kidneys behave in this fashion. (The first two left for abroad positions.) Here is a wild speculation: these fluctuations may be a strong indication of the body's innate healing process, trying to deal with the chronic inflammation of the kidneys. True or false? A layman's interpretation must be accompanied by a large dollop of doubt.
This is the reason why I believed, back in the mid-1990s, that the body's healing process can be influenced by two factors. One is lifestyle, by which I mean nutrition, work patterns, and emotional equilibrium (or the lack of it). The second is clearly, in my opinion, the mind-body factor, i.e. the influence of our mind over our body (also called psychosomatic disorder if things have gone wrong somewhere in our psyche).
The trouble with such an assumption is that, once a psychosomatic disorder has established itself in our bodies, even if the stress factors that led to the disorder in the first place are removed, the body's dysfunction, triggered by a psychosomatic condition, has become irreversible. Or so, I must add, I believe.
Only a short while ago, when I started to do some in-depth research into kidney failure in preparation for this bookt, did I learn that glomerulonephritis (*chronic renal insufficiency) is an autoimmune disease.
Autoimmune disease, I read, "is one of the growing number of otherwise unrelated disorders now suspected of being caused by inflammation and destruction of tissues by the body's own antibodies (autoantibodies). These disorders include acquired hemolytic anaemia, pernicious anaemia, rheumatic fever" (which I had at age 17 and 18), "rheumatoid arthritis, glomerulonephritis," (aha!) "and several forms of thyroid dysfunction, including Hashimoto's disease. It is not known why the body should lose the ability to distinguish between substances that are 'self' and those that are 'non-self.'" So, medical science still does not know why. Once the why becomes known, a remedy may not be far off.
Autoimmunity "is a disorder of the body's defence mechanism in which antibodies (autoantibodies) are produced against certain components or products of its own tissues, treating them as foreign material and attacking them."
In layman's terms, parts of my body are fighting against other parts of my body.
The question poses itself with unerring logic: why cannot a research team discover the key to unlock this mystery? There has to be, it stands to reason, a trigger that makes my resident autoantibodies realize they are destroying resident tissues of the same organism. Something has gone awry. The question is what? I am certain that some scientists somewhere are trying to unravel that medical conundrum. The solution will, one day, be rewarded with a Nobel prize for medicine, but in the meantime we "terminal" kidney patients have to accept our fate. The hope that alternative medicine, by sheer trial and error, finds a way to make the antagonistic autoantibodies realize that kidney tissue is not the enemy, and therefore leave it alone, unattacked, functioning, and healthy, surely is rather vainglorious.
Meanwhile, should I go find a medical herbalist, a naturopath, a homeopath, or a practitioner of interactive guided imagery? (In an interactive guided imagery session, the patient sits in a light trance and is guided through a positive dialogue with the organ in question, asking it what the trouble is, promising to alleviate the irritation, and so on.) Hocus pocus or sound alternative medicine? In my case, because these sessions are very expensive and have to continue for a while, I could not even consider this treatment.
Or should I consult an osteopath who practices the almost-lost art of cranial manipulation therapy? Are my kidneys damaged because I fell on my head from a height of two feet onto concrete at age thirteen? Perhaps this fall disrupted the natural harmony of my cranial bones? I mean, what the hell, when we are desperate we tend to try everything, as improbable as it seems.
I have time yet. I try to live right these days, and this is what I am doing.
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In October of 1996, the new (third) nephrologist I chose apprised me of my elevated creatinine count of 304. From now on, he said, I could expect my serum creatinine level to accelerate, perhaps even exponentially, in other words, rapidly. Not good news, but I accepted his verdict. He told me it was time for me to attend the renal clinic next door regularly. They would ride shotgun (not his words) on my "progressive and irreversible" disease and guide me toward either dialysis or transplant. The alternative to either of these treatments, he said, would lead to death from blood poisoning which would occur with absolute certainty.
No way out? No back door? No hope for reprieve?
I went into an emotional tailspin and decided, in a touch of self-destructive glory, to refuse-when the time came-either a transplant operation, or dialysis. Let nature take its course. The resident social worker told me that such contemplation is not uncommon among patients with kidney failure. She added that, in almost all cases, the patients chose dialysis rather than death.
That negative phase didn't last long because, in principle, I don't believe in committing passive suicide: I am a practising Roman Catholic, and for me passive suicide is not an option, at least not while I am compos mentis . But of course, the choice is not that well defined. I could argue, with the same amount of logic and conviction that interfering with God's will by extending our life artificially is against my religious faith.
Should I ever lose the ability to reason, well, I may change my opinion, but then I would be no longer capable of choosing the date of my exitus.
The whole atmosphere of inevitability in the doctor's office and, even more so, in the renal clinic exacted its toll on me. The doctor was crisp, matter-of-fact, to the point. This will happen to you, ta ta ta. A little later in the renal clinic, three professionals descended on me and looked at me with bright open eyes. I must say all of them have an extremely supportive attitude, and they welcome patients with unflagging cheerfulness.
Such professional cheerfulness has a purpose of course-it is designed to make the unpalatable truth more bearable and, by and large, it seems to work. As well, I was told that my own attitude of either acceptance and good cheer, or rejection and dejection, was crucial for my wellbeing. That makes sense, of course. A cheerful disposition also makes the work of the renal clinic more acceptable for the resident professionals-clinical nurse, social worker, dietician.
The nurse was too trim to be motherly but she tried to transmit care and compassion. She and the other two were ready to deal with any outbreak of misery, frustration, anger, and fear. Nothing, I was sure, would daunt them, nothing would scare them. They had seen it all, all these emotions, this lashing out at whoever stood in the path of such non-directed aggression.
Then there was the social worker. She offered succour, offered names of fellow sufferers, offered access to a peer group afflicted with the same disease. Any question, any time, come and see her. (I was to get to know her much better in 1999, when an emotional crisis affected me and she gave me some of the best advice I have received from professionals. Two psychiatrists I was sent to consult were so pedestrian and pedantic that I fired them after one session.)
The dietician was a little less assertive, but in her own way she seemed to dispense good advice: eat this, but watch for phosphorous, avoid that, take in good protein. What's that? Well, animal protein such as breast of chicken (no skin), piece of fish, an egg or two. Gave me the numbers, 150 grams of so-called good protein a day. But I was a vegetarian! Well, you will not get sufficiently "good" protein from beans and what-have-you, and they are full of phosphorous and other nasty little surprises.
The list I came to look at was a long litany of mostly do-not-eat this, or only so much, combine it with this, but not that. If I were to adhere to such a rigid food regimen, I would need a little book listing the Dos and Don'ts. Her advice came with all the weight of allopathic tunnel vision. Well, sir, we don't really understand this (or that) too well yet, as research is being done we hope to discover better alternatives to certain foods containing too much of this or that.
But despite the trio's best efforts, I was ungracious and somewhat morose. I felt put upon. They were paid to hear about my own private misery, the misery of being at the mercy of a blood-cleansing machine, of having no choice but to die in my body's waste products. I suppose my initial reaction was one of blaming the messengers, a rather common reaction to bad news. But I kept my counsel and did not, at least openly, let them know how miserable I felt and how little I appreciated their attempts at making me understand and, through understanding, accept my fate.
The one choice I had was never mentioned. To stay on the "progressive and irreversible" descent from functioning, self-reliable human being to nothing better than a wreck which needs to be drained and recharged with clean blood every two days.
Ah well, I suppose according to their conventional wisdom it's the anger this trio of health professionals were talking about that makes me write these bitter lines. But it's not the fate I rile against, it's the scenario of inevitability that brings me to question their good intentions. They are following orders: cheer up the pre-dialysis patient, support him, explain things to him, be there when he needs you, be patient with the patient, help him relax.
I am thinking of writing a letter to the nephrologist to call off the pre-dialysis anti-shock troops and let me be, let me deal with what will come. (I never did.) I come from che sara sara pop philosophy, divine inevitability, but I do not believe in the infallibility of today's modern empirical medicine. What will befall me is decided in other, higher headquarters, but I reserve the right to make an effort righting the wrongs my body is undergoing, likely through my own fault. If I knew what I had done wrong to my body with my mind, I would know the remedy. I also know that sheer will power, of which I have a large measure on hand, will not suffice to do battle. Exercising will power and doing battle is not how to bypass a chronic condition and turn it on its benign head.
It will take other measures.
Again I have strayed from my intended topic, my self-imposed health régime.
So let me confess what my strategy is, besides finding an alternative practitioner who will unlock the secret gate leading to the path back to complete health.
I returned to strict vegetarianism, avoiding all animal products.
By that I mean a variety of green and other vegetables, all kinds of fruit, protein from tofu, beans, lentils, and other legumes. One staple has always been, and will be, carbohydrates such as good bread, rice, pasta, so forth.
Off the table are margarine, all oils except for extra virgin olive oil. Most canned foods are banned. Well, margarine is back on the table, after some research-I chose Becel.
Did I say all animal products? That includes milk, cheese, all dairy products no matter how low in fat. I bend my self-imposed rules by eating three or four eggs a week and some cheese.
The rationale for this regimen is partly allopathic, partly alternative medicine-inspired.
After the allopathic dietician promoted the ingestion of chicken, fish, and eggs, I queried my intelligent endocrinologist number two. He suggested I forget that advice and get my protein from vegetable sources. "I am not worried about the amount of phosphorous you eat now. I want you to bring your weight down.
"If you manage to reduce your weight to 85 kilograms (187 lbs), I will be happy. Mind you, most of my patients do not manage to lose weight, or if they do, they climb back up, even higher than before." (He was partially right, at that. As I write these lines, in late 1999, my weight has been constant at 89 kilograms, down five from when he remonstrated with me.)
(Addendum in June 2000: My weight is down now to 80 kilograms, and is staying there. My diabetes has regressed.)
I suggested I would prove this statistic wrong. He nodded, smiled, eyes sparkling. He did not say I would not manage to bring my weight down to 85 kilos, did not even hint it in his smile. That's what I call a supportive doctor.
I walk for at least half an hour every day, uphill and downhill as the land dictates. Some days I walk less, then walk more the next to stay on my self-imposed average.
I do carry a tiny spray bottle when I walk or leave the apartment. Here is why.
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A psychosomatic event ambushed me a few weeks into my emotional tailspin. Several days of appearing and disappearing upper-left chest pains began to bother me, but I ignored them until early in November of 1996 when, soon after lunch, the chest pains returned, this time in medium force. When they did not abate after half an hour, I drove home and asked to see my doctor.
No one told me, after I had described the symptoms, to visit the hospital's emergency department immediately; nobody mentioned that there they are best equipped to institute high-tech intervention in an angina pectoris attack. The doctor sent me across the hall to the pharmacist who had a spray bottle containing 100 "hits" of nitroglycerin ready. Two hits, wait five minutes, and the chest pain, shooting up into the neck and lower jaw, went away. Then an electrocardiogram.
I'm afraid I thought of several vile words when I heard the verdict, "angina pectoris." Wasn't my chronic renal insufficiency paired with diabetes enough? Now all of a sudden I had to walk slowly, breathe with difficulty, perhaps carry around one of those canisters with oxygen, two plastic tubes leading into my nose, a true elderly invalid, a decrepit old fart.
I needed a new doctor, a cardiologist. Singlehandedly I manage to keep four doctors and three health professionals in bread, butter, and honey. Am I worth it? Well, let me deflect that and do some stonewalling.
A minor case of angina, he said. What does minor mean? Well, it's minor, not major. Carry that nitroglycerine spray bottle at all times. Keep taking Tenormin and Adalat XL to control a sudden rises of blood pressure and thus curtail further angina attacks.
Funny though, that after a few days of having mended my emotional fences and coming around to being my old, positive, optimistic self again, no more angina attacks occurred, not even on the treadmill where they make you walk "uphill" to near exhaustion. Crude method but, it seems, effective. So what happened? This reprieve came even before I learned, two weeks later, that my creatinine count had gone down (alas only temporarily) to 253.
So my changed attitude must have had something to do with it. When I relegated the "poor-me" attitude to the far corner and told it it was a dunce, when I discarded my negative reaction, when I lost my apprehension about dialysis, when my mind told my body to let go, my supposed atherosclerosis played possum. Perhaps it will return, but I will be prepared with more positive thoughts and a good attitude.
So that is where I have landed. On my butt but not flat on my face. Down but not out.
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For the past few years I have been on:
100 mg Tenormin (Atenolol) a day
20 mg of Altace a day (reduced to 10 mg after dialysis)
40 mg furosemide a day (increased to 80, then cut off)
5 mg Norvasc twice a day (reduced to once after dialysis)
10 mg Zocor (to regulate blood cholesterol) a day
1 DIA multi-vitamin a day
All these were prescribed medication, to which I added:
1 Garlic oil capsule a day
1 wild salmon oil capsule 3 times a day
1 Vitamin E capsule a day
80 mg Aspirin a day (blood-thinning agent)
And since mid-1999, the following were added:
3,000 units EPREX a week, self-injected, to raise my hæmoglobin level from a low of 109 to 140. (Now increased to 4,000)
3 tablets of Ferro Gluconate a day (now replaced by Niferex-150 once a day. Much better for digestion, more ffective.)
1 one alpha vitamin pill every second day
3 (now 4) TUMS tablets three times a day before meals
My stomach has, by now, become a pharmaceutical cemetery. But I bear the medication régime with good grace and gratitude, for it is keeping me alive and relatively doing well.
[Since April of 1999, I have been enrolled in the St. Paul's Hospital's pre-dialysis hæmoglobin study for the next two years. The weekly injections of EPREX coax my bone marrow to produce more red blood cells and raise my hæmoglobin level to normal; no more anæmia. (The Eprex injections are now administered in the dialysis unit.)
As a result of the EPO therapy, my energy level has increased and, even better, my occasional attacks of angina pectoris have almost completely abated, since the EPO therapy has enriched my blood with oxygen. I can sing and dance again. Well, metaphorically speaking at least.
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You can see the pattern. Now a quantum leap to the end of 1999---still ranging in the high 400s. Early in April, 2000, it shot up past 600-dialysis now an irrevocable event. When it reached 712, I was put on dialysis.
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I am still alive and doing very well physically, apart from my kidneys. Emotionally, I have undergone a severe number of shocks and have retained much personal pain and temporary depression.
First, though, my physical status quo. The ESRD, end-stage renal disease, has progressed slowly, as expected. Eventually, my kidneys will cease to function, and a new set of factors will invade my health and life.
As a patient with chronic renal insufficiency for the past fifteen years since my first diagnosis in mid-1985, I must make a personal statement here. I can only wish that kidney patients everywhere else will be treated with the same care, kindness, and competence as I experienced all through the years.
The Renal Clinic at Vancouver Hospital-technically it is part of the Health Sciences Centre-and the team at St. Paul's are professionals; not only are they competent but they are guiding their patients through the difficult times of adjusting to this death sentence.
Were it nor for the two bright lights at the end of this dark tunnel-exitus by renal shutdown-such as a) kidney transplants and b) either haemodialysis or peritoneal dialysis, our situation could well be compared with sitting on death row in gaol, awaiting the day of execution, i.e. death of natural causes.
I remind myself that my own father, at age 49, did not have two lights at the end of his own tunnel, when he died on April 29, 1930.
So I have every reason not only to welcome modern technology but especially the medical staff who, without exception, are making the slow progression from a healthy state-or seemingly healthy, since ill effects do not manifest themselves until later in the renal insufficiency stage-to dependence on either a donated kidney (from a live or a dead donor) or, failing that, on dialysis as the only way to prolong our lives.
I also remind myself that I am still months, perhaps years, away from having to face dialysis or, I keep hoping, a transplant operation which, of course, at my age of mid-seventies as I write these lines, is problematical.
Coming to think of it, there are other bright aspects to my permanent condition. Really, you ask? Really, I say.
As a result of bang-on medication for a number of years now, two of my permanent side conditions have improved tremendously.
Now I can even walk for an hour after our heaviest meal of the day, lunch, without acute discomfort, although at times the tightness in my throat warns me to slow my pace.
My cardiologist explained to me that the blockage in one artery-detected and pinpointed by a non-invasive investigation-unfortunately has not disappeared, or cleared up, but that my body, marvellous instrument of self-repair that it is, has most likely produced a fine network of alternative blood vessels that carry more and more sufficient blood to my heart, thus reducing the danger of a fatal heart attack.
Addendum in June 2000: successful angioplasty seems to have worked. Angina gone.
If my body, i.e. my deficient immune system, could only stop the steady deterioration of my kidneys and keep the remaining parts functional, everything would be fine. Unfortunately, as my nephrologist pointed out, and what I have now accepted as the Holy Grail, I must prepare for renal shutdown sometime in the future.
So far, this certain fate-unless I should die from other causes before that happens-has not rendered me panicky.
A little philosophy is, perhaps, in order here.
You see, I have always thought people who give in to hysteria when confronted with death or other life-threatening conditions (a little black humour is always indicated) to be undignified. But can we expect that people comport themselves with a certain dignity when faced with the inevitable? That depends, of course, on upbringing and disposition. Some among will wail and gnash their teeth, others will bear their fate stoically and bravely.
Dying with dignity is a goal I have set myself, whenever the time is at hand. But I cannot expect to guarantee such self-imposed and blessed state of dignity in face of overwhelming pain: should that occur, well, everyone has his breaking point.
I am reminded by what my wife told me, who cared for her mother for a whole year before she died from cancer. The mother bore her pain bravely and with patience, always concerned about the welfare of her children rather than giving in to the pain and bemoaning her destiny.
I also remember my mother who, at age of ninety-three, by then quite frail and looking almost translucent, drifted from life to death within one week without any display of panic or hysteria.
I was not present when my father died from renal shutdown, and I didn't want to ask my mother. I expect he died with dignity as well, or should I say, I hope so.
Why do I linger so much on dying with dignity? Why is it important for me to maintain calm even in extremis?
One reason, perhaps, is the almost daily visual bombardment of our compassion when we watch crime or accident victims' relatives crying in front of television cameras, and I despise the camera operators who are told my their correspondents to zero in on that tear-ravaged face. The more tears and snot they can catch in close-up, the better for their professional standing, no matter how demeaning it may be for the victims.
What does it do for us, the viewers, when we are invited, to watch someone else's grief on public display? I am one of the, seemingly, few people who always, without exception, drive right past a fatal road accident.
These, and other experiences of bad public taste, have impelled me to choose dignity in all extraneous and marginal situation as one of the ultimate human goals we can attain.
Of course not everyone can be expected, even by my somewhat elevated standards of comportment, to avoid visible grief. It seems to me, however, that grief-which sooner or later will come to us all-must be relegated to one's private space. I do not want a camera, i.e. other people, to witness that grief has clutched me to its terrible bosom.
So, will I be able to face dialysis with equanimity of good grace?
Time will tell.
As far as a transplant operation is concerned: despite my advanced age of 75 at this writing, I am looking forward to the day the transplant surgeon will wield his scalpel. I have nothing to lose but my life-always a risk in a surgical procedure-and everything to gain, should it succeed. For my expected donor, the situation is vastly different-and I cannot second-guess her motives except to believe she is acting out of love for me.
Meanwhile, I live as if there were no tomorrow. Tomorrow does not exist, you see. It is only in our imagination, based on reasonable expectation from the past, that tomorrow exists. We are not certain that it will arrive, on time, and undamaged. Nothing is as certain as that nothing is certain.
I have strayed from the personal chronicle of an illness to general observations about life at the turn of the millennium. But that is not so farfetched as it may first appear. While we are alive and functioning more or less well in our innocence (or guilt-take your pick), we amble along as best we can, expecting the best (some) or the worst (some).
Being condemned to the rest of our lives to dialysis just to survive is the fate of a certain percentage of population. Within the foreseeable future, some research team somewhere will come up with a solution-either to stop chronic renal insufficiency in its tracks, or to invent a methodology to regenerate dead kidney cells by genetic manipulation. Or perhaps a once-in-a-lifetime injection or pill that will stop the rot inside our kidneys and prevent renal insufficiency in the first place.
Can kidney patients look forward to such a medical miracle? As we are finding out, early in the year 2000, such dreams are no longer impossible-just a matter of time and patience, until the science boffins have the miracle answer developed and mass-produced for us, the consumers and patients.
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In April of 1999 I flew to Mexico to pick up my wife, who had been visiting her family for some weeks. Back in Vancouver, I started the EPO therapy at St. Paul's Hospital, with almost immediate beneficiary results, as I described higher up.
But I had committed a serious lapse in judgement. While living by myself I had started to snack on European wieners, sausages and salami, that kind of thing. I ran roughshod over my guilt for having abandoned my vegetarian habits. But I continued in this vein even after my wife and I returned from Mexico.
All that vegetarian mumbo-jumbo was just that, and a few morsels of red meat, chicken, and turkey wouldn't harm my creatinine level, would they? I mean old wives' tales and puppy dogs' tails and all that. Except that the creatinine level jumped to 512, and I became seriously concerned. Why the quantum jump forward?
So I did an about-face and cut out all the animal proteins again, and, do you know, after three weeks my creatinine level sank down to 480 again. Direct correlation? There is no direct evidence, but it seems a pretty good guess to assume that the absence of animal protein in my diet had a salutary effect.
A person extremely close to me offered me one of her healthy kidneys. I was ecstatic, yet some feeling of guilt entered the state of anticipatory bliss-did I have a moral right to accept her kidney? She is 28 years younger than I, and the transplant physician had told me point blank that, even with a new implanted kidney, I would not live any longer, but rather that my quality of life would be immeasurably enhanced.
So did I have the moral right to take a kidney from this person when at the age of 75 my life expectancy could be measured no longer in decades but in years? I have, to date, not resolved that question, except that the potential donor is adamant that she wants to go ahead, and that I have learned that someone of my age does not always dialyse well.
The acute danger during dialysis is the increase in the ischemic heart disease and the danger of dying suddenly from arteriosclerosis, the classic heart attack death.
But now we are awaiting the many test results the donor has to undergo, and if everything goes well, the transplant operation will be scheduled perhaps late in the spring, or early summer, of the year 2000. The projected and anticipated transplant can be called off at any time during the waiting and examination period. Both of us understand that very well.
It was rather a rocky path that led to the transplant from a living donor decision. Originally, earlier in 1999, the transplant surgeon had declared me fit enough to undergo a transplant, while the more conservative transplant physician decided I was already too old for a transplant at 75, especially if I had to be put on the provincial (British Columbia) waiting list for cadaveric kidneys, a period of four to five years. So he turned me down. I was dejected but accepted his decision.
When I approached the transplant society once again, after the potential donor made her decision to donate, the physician changed his opinion and permitted the compatibility tests to go ahead. He stipulated that a cadaveric kidney for me was out of the question, because at that time I would have reached 80 years of age. But with a living donor, well, he would go ahead.
His reversal, so hopeful for me, made the rounds in the renal department in no time at all.
At the moment, toward the end of 1999, I feel full of energy, revitalized by the EPO therapy, not affected by angina pectoris, with a positive outlook on the future.
Attitude, I know, has everything to do with a person's well being. If I were moping around, fearing a heart attack, dreading the onset of renal shutdown, my physical health would deteriorate.
People tell me I do not look 75, and that they give me early to mid-sixties at most. I am flattered, but I reply that unceasing work and controlled stress-with the accent on controlled-even during my retirement years have kept me flexible and toned up.
I walk half an hour every day; I am neither lean nor excessively overweight. According to my age and height, I should weigh in at no more than 85 kilos, or 190 pounds. I do weigh 89 kilos, or 197 pounds, and I could afford to lose ten pounds or even more.
So now it is waiting time, and I use my days to write books with other writers and artist friends. I behave as if I were still working for a living rather than retired.
Appointment with the peritoneal dialysis physician, a straight-shooting, no-nonsense, take-no-prisoners kind of MD. After this one-hour visit, I have revised my estimate of a future with dialysis-not very encouraging. Statistics, always dangerous to have quoted at you, will have it that people of my age, with added diabetes, can expect a mortality rate of 20 per cent per annum.
What she also said, as did my endocrinologist, that what will kill me is not the dialysis or kidney failure, but my heart as the ischemic heart disease, arteriosclerosis, will increase because dialysis does not clean the blood sufficiently. She went into details, but those are irrelevant for me.
All the more to hope for all systems go with the transplant, then.
Late November 1999
The one bright spot in the array of specialists looking after me is the cardiologist, a thorough and reliable MD. He will perform another stress test on my heart to determine whether the blockage in one of the arteries feeding blood to the heart has remained the same, increased, or decreased. Depending on the outcome, he will recommend angioplasty to be performed before the transplant operation can proceed.
The Transplant Society's living donor co-ordinator called and scheduled a renogram for my living donor for mid-December. One more hurdle to clear. So far, everything is positive, the GP assured my donor that she was in excellent health.
Also in mid-December, I expect my nephrologist will schedule me for the surgery to create a fistula in my left forearm. Apparently it takes up to six months for a fistula-the point of ingress and egress of my bloodstream going into, and coming out of, the hæmo dialysis machine-to mature, or cure, or whatever the term is. Also I will find out the creatinine level at that time, which will determine the state, i.e. onset, of my ESRD.
So how do I react to all this news?
Tomorrow is December 01, 1999. One month to go before the new millennium and the unknown quantity of the Y2K problem.
Up to now, the spectre of dialysis, of complications due to the diabetic condition from which I also suffer, the 20% chance of dying in the first year on dialysis, all this had so far been an event scheduled somewhat in the (distant) future. But with the creatinine level nudging 500, suddenly mortality has become a very real possibility.
I had expected to panic or, at least, go into a depression. But on the contrary, my spirits are higher now than they were a year ago. I ascribe this upbeat feeling to two major factors;
In more detail: to subject a loved one to one's blue funk is just not on, as the British would say. Of course, my social worker had already warned me of the effects of going into depression-that is the core issue of a psychosomatic disorder, of course, and condition with which I am thoroughly acquainted (see the account of my illness at the age of 17 and 18 higher up).
So that has now become conventional wisdom: do not display your dismay at your own fate, under any conditions. That is good thinking, and it works, too, as I am discovering through hard evidence.
A second method for keeping The Hour of the Wolf at bay is hard work, that quintessential Anglo-Saxon remedy for social ills. I am knee and elbow-deep in writing, making art, designing books, printing, and all the small errands connected with publishing and keeping a stable of fellow writers on the project content and motivated.
This self-prescribed remedial action is working far better than I had expected. A year ago, as I write these lines, my personal life had suddenly taken a downward swing: never mind the reasons, they are too private to mention. I had then decided to abandon writing and publishing.
I was also, temporarily, living by myself, situation entirely new and unwelcome. I hardly knew how to go through every day with nothing to do: I read a lot-but I do that anyway, for reading keeps the mind sharp and in tune with the times-and went for walks, but I do that also. I took to going for lunch at the nearby community center for seniors, but when surrounded with other seniors, I felt out of place. I had nothing in common with them.
The food they served at the centre's kitchen was dreadful-overcooked vegetables, cheapest ground-up meat and fish, overly sweet dessert, bland tea, and undrinkable coffee. Then what to do? I used the telephone a lot, keeping in touch with people I hardly knew, and who gently disengaged themselves from my pitiful loneliness.
The recovery began soon afterwards, two months into my descent into misery. I took interest again in writing and publishing, inspired some friends to contribute, and so far we have put out one book, the experience so beneficial that we decided to go ahead and produce seven more books as a writing team-about the topic of the seven deadly sins. The first, The Book of Rage, is already well under way. Hot damn!
That personal experience showed me how ill-equipped our society is to deal with the advent of old age and retirement. Unless we seniors find a way to spend our time imaginatively and creatively, we wither on the vine and develop all kinds of diseases. For my part, I have solved the problem of retirement by not retiring but by working and risking some of fixed income to print books.
Misery shared is not misery vanquished.
Let me explain. Visiting the senior's center brought me face to face with other elderly people, my age and older. In the dining room I found that, even inviting myself to share a table with a group of women or men-men and women rarely mix, I have found-was a social disaster. I found nothing to talk about with them, and their concerns were too picayune to interest me. Call me arrogant, but when you are blessed with a sharp and inquisitive mind and have pursued intellectual topics all your life, talking about nothing is the ultimate bore.
I tried something else, with equally dismal results. I went to the local United Church-now bear in mind that I am a Roman Catholic-for the purpose of making social contacts. I spoke with the minister briefly, who welcomed me warmly. Then I went to a pancake breakfast at dinner time (that's what they do, bless me!) and shared a table with other couples and singles. Desperately, I looked for contacts, wanted to start a conversation, discuss a current topic. But nothing. No one reacted to my occasional verbal forays. I felt like a social outcast. Was I being a prissy senior, a malcontent? Or did I have reason to feel ostracized for no reason other than I was a newcomer, unknown to the congregation?
I went to speak to the minister. "Well," he said, "I understand your reaction. But bear in mind that these people do not know you. They are reserved. They did not know whether they could trust you" That was it. No word about Christian fellowship, about the milk of human kindness. No, a collective stiff upper lip against the newest intruder. And what about trusting a new member of the congregation. What is there to trust, pray tell Why did they not just open their hearts and minds, accepted the stranger in their midst, and judged according to how he behaved, not according to what they own silly paranoia dictated them to feel?
Another lesson learned late in life. I quit the church after three weeks. Not my cup of tea at all.
But now everything is just fine again. Life smiles at me, because I smile at life. I am grateful for every day that I can spend without pain, without nausea-I understand that is coming later-and without any other symptoms endemic to a chronic renal condition.
I have also, I hope, licked the problem of chronic constipation. This is not a topic openly discussed in polite circles, but let me assure you, if you suffer from constipation, it tends to dominate your waking (and sleeping) hours. I went to the pharmacist after even my renal nurse could not offer a practical solution.
The pharmacist was down to earth. Stay away from all laxatives, even those from allegedly natural sources, because none of them is intended for protracted use.
A horror story follows: My older sister in Germany, ten years my senior, used to drink a herbal tea recommended as "a gentle laxative." For twenty years, she and her husband drank that tisane infusion daily, and then both were diagnosed with cancer of the colon, necessitating surgery and the insertion of a colostomy bag. The tisane contained a herb that acts as an irritant on the stomach, duodenal, and colon, the entire gastro-intestinal tract.)
Instead, she said, go to a water-soluble powder that produces more bulk in your stool. Its name is psyllium hydrophilic muciloid for oral suspension. It is orange-flavoured, can be taken on a daily basis without risk to the intestines, and it works. I opted for the drugstore's generic brand, much cheaper than the leading brand. Just as effective.
Late December 1999
The axe has fallen, and once again I am battling despondency and depression. I was told to go see a vascular surgeon to evaluate my left forearm for vascular arteriovenous fistula surgery. So I did, thinking, oh well, no big thing, a small incision or two, plug the vein into my artery, and my fistula would function for the anticipated hæmodialysis. How wrong I was!
The vascular surgeon seemed competent enough-young, deep voice, straight-forward in his news, representing the new breed of no-nonsense physicians I much appreciate. Prevarications and/or euphemisms do not work with me, never did. I do not belong to the people who want to be spared the bad news.
There is a whole philosophy behind these few words, of course. Much in literature has been written about fathers, mothers, spouses, and siblings who have wanted to spare their loved ones from the dreadful words: "You have cancer (insert any fatal illness here)." To withhold information from a seriously ill person is stupid and dangerous, it seems to me.
It is just as stupid and dangerous to tell a loved one, "You'll be all right!" Far better to offer one's support and help in the coming months and years. But this discussion can be argued from both ends of the spectrum, so I will leave off for the moment.
The surgeon, at any rate, told me point blank that, first off, there was only a 70 to 80 per cent chance of my arteriovenous fistula to function, because my vein was deeply embedded under the skin, a little hard to locate and made to work.
Then, before he let me sign the consent form, he spelled out the possible complications of such an operation. An infection can develop, to be treated by antibiotic medication.
More serious was the fact that sometimes the fistula causes the hand to go pale and cold, start hurting, due to the proper circulation of blood. Finally, most fistulas work for one or two years and need to be shut down, and another one installed.
So my options are suddenly limited and less than appealing. I will consider opting for, at least on a temporary basis, for the peritoneal dialysis where the implant of the tube in my abdomen is less invasive and not fraught with such limited potential.
But I need advice, and I will consult with my social worker, who has a better understand about the emotional aspects than does a surgeon, or even my nephrologist.
I still hope that I won't need the fistula, i.e. dialysis, before my transplant operation-if it ever comes to pass.
Once the first shock of all the negative implications of having a fistula constructed on me forearm has abated and given way to a more level-headed reaction, I am analyzing myself: why do I, why do people everywhere, tend to lose our cool so completely when they are told the unpleasant truth about their health?
Simple, really. We know we are not immortal beings; we know we must and will die, but we see that days as being somewhat distant in the future. Death is not a threat when your body functions well.
Chronic renal insufficiency, or ESRD (end-stage renal disease), is both a terminal threat and a distant threat while we, the patients, are feeling well-we are still on top of the world. Dying from diseased kidneys, being condemned to waiting for a donor or cadaveric kidney, or waiting for the inevitable dialysis debacle-these three variations are very similar to facing our death, as long as it is still in the murky future. Meanwhile we carry on with our lives and push the date up ahead, preferably out of sight.
Then along comes our nephrologist, or vascular surgeon, and drops the other shoe. He will give us a date of no return, long past the fail-safe. Then we begin to feel mortal, hence afraid. It is then we need to summon our emotional resources and combat despondency.
How do I fare in this scenario? Well, being a Type-A personality, I tend to react, some say over-react, to unwelcome news. Then, after a day or so, the mental brakes come on.
First off, I find it very useful to be married to a woman with whom I have a splendid and close relationship, call it love for want of a better word. She tells me, now and then, how she cannot envision having to live without me.
Immediately my own reaction to her temporary absence earlier this year, 1999 still, comes to mind. Utter loneliness and an overpowering feeling that life without her is not worth living.
Now we all know that some people are perfectly suited to a life without a partner. I know of several professional (as I call them) bachelors or singles who appear content living alone. Reality may be different, but that is my perception, looking at them from the outside.
Then we know that some of us were born to live in a relationship, and when we are outside such a relationship, we feel incomplete, lonely, and desperate for company.
So when my wife tells me she dreads the day I am gone from her, i.e. I have died, I understand the terror she feels in anticipation. There is nothing much I can do or say to alleviate her fears. Or so I thought until recently.
But what I can do is two things. I can make certain that I live right and sensibly, to prolong my life as much as possible. Then I can behave in a way that does not exacerbate her fears, meaning I can banish my own fears and put on a contented face. Once I decided on that behavioural pattern, I found it relatively easy to comply with my own decision to opt for mental and emotional equilibrium rather than giving in, and wallowing in, despair.
So calm down, Jurgen, weigh all the pros and cons of the vascular surgery one month down the road, and trust that not all the negatives listed by the surgeon will occur to me. That is all I can do.
Or I can opt, of course, for no fistula at all, taking my chances that a transplant operation will indeed be scheduled in the Year 2000 for me and my donor. I may miscalculate and wind up with an incision in my neck to facilitate an emergency dialysis, should my creatinine surge out of control and shut down my kidneys.
Should I gamble or go with the conventional wisdom?
Stay tuned, as the broadcasters say.
10 January 2000
There's a heavy irony in the fact that, in November of 1999, my publishing company, Thinkware, published The Sky Is Falling! Millennial Threats and Mythinformation . While the dreaded Y2K bug did not appear on my computer, nor did it disrupt the flow of water and electricity, it did strike in another area-unexpectedly and devastatingly.
On this date, my potential kidney donor and I were invited to meet with Dr. Paul Keown of the B.C. Transplant Society. He told us that he had both good and bad news. The good news was that my donor had well-functioning kidneys, well, rather, one kidney.
That was the bad news: my donor has gone through life with only one, the right-side, kidney. This is only the second such case in the past five years at the society, Sharon Duncan the living donor co-ordinator told me on the phone next day. One in 2,000 people are discovered to have only one kidney but generally live stable lives.
Dr. Keown did not need to tell us the implications of the news: there would be no donated kidney for me. He also reiterated his decision, made earlier last year, that he would not accept me on the waiting list to transplant a cadaveric kidney into me when and if it became available in five years.
"By then," he said, "you will be eighty years old, and you can expect your health problems to increase." End of hope there too.
The result came via the ultra-sound renogram and was conclusive.
We felt numb on that day. We left Vancouver Hospital in silence, holding on to each other. There was little, if anything to say, except that my donor told me she would much rather have faced the major operation of losing one kidney, if it meant better health for me. She felt, for a moment, that she had let me down. I told her it was not her fault.
But what about the test result, she asked. Could they have made a mistake? So I sent off an e-mail message to Ms Duncan:
To: Sharon Duncan
Subject: RE: (donor's name withheld, editor)
Hello, Sharon: Bad news was imparted to us both by Dr. Paul Keown yesterday. It was unexpected--or I should say, the reason for the kidney transplant not going ahead--and at first we were sort of reeling under the impact of the news. Now, after some reflection, a number of questions have arisen. May I trouble you with them?
1) Is there a possibility, however remote, that the renogram results were less than conclusive?
2) Is there a possibility, however remote, that (her) test results were mixed up with another donor's renogram? I do not want to cast aspersions as to the competence of the laboratory and Ultra-Sound technicians, but media reports about such mix-ups indicate that a chance exists.
3) Could we request getting visual access to all the test results, please? If possible, via e-mail, or by fax (previous alert to transmission is needed so I can switch the machine on, or even a look at the ultra-sound image of the renogram.
4) Claire Skjelvik, the renal clinic's social worker, mentioned to me today that (my donor's) earlier 24-hour urine collection indicate elevated levels of protein. Should she be concerned? Should she seek medical advice/treatment?
5) Could we request, if your office considers this at all reasonable and if a different result lies within range of possibilities, a second renogram performed by, perhaps, the St. Paul's Hospital unit?
Please be assured that our confidence in the expertise in all agencies involved in this short and abortive investigation of kidney donor evaluation has not been affected. But because the results do affect both of our lives, we feel we do not want to leave anything to chance, or misinterpretation. Thank you for your efforts, and please thank Jane (Ritchie, the transplant co-ordinator, editor) when you see her as well.
From: Sharon Duncan [mailto:Sharon_Duncan@BCTS.HNET.BC.CA]
Sent: Friday, January 07, 2000 11:36 AM
To: 'Jurgen Hesse'
We will have the results on Monday, and have made an appointment for you and (donor's name) to speak with Dr. Keown on Monday, January 10th at 10:30 a.m. in the Transplant Clinic (Heather Pavilion, A Floor). When you arrive at the clinic, please ask the staff to page Dr. Keown.
From: Jurgen Hesse [mailto:email@example.com]
Sent: Friday, January 07, 2000 8:42 AM
Sharon: (The donor's) GP, Dr. Glanzberg, asked her yesterday whether she had
heard about the results of the mid-December renogram. Can you let us know?
Sharon Duncan telephoned the same day. She would gather all the information, including the renogram film, so she could show the results to us sometime next week. Also, she would try to get us to see the St. Paul's Hospital nephrologist, Dr. Landsberg. Perhaps, Ms Duncan said, he would authorize a second renogram.
It is now three days since I have received the news. Surprisingly, I do not feel dejected, or desperate. I have now lived so long with a deteriorating kidney ailment, glomerulonephritis, that even the vanished hope of a transplant operation early this year 2000 has not unhinged me emotionally.
I immediately searched my mind for another potential donor. I have three children, two daughters and one son, all of them in their thirties, one of them married with two sons, one a single mother of a daughter, and the son about to enter a relationship he hopes will lead to settling down and having a child or two. I cannot, will not, ask any of them. End of mind-search.
What I have done, instead, is to fire off two e-mails to Nova Scotia and Prince Edward Island, asking how long the waiting periods for cadaveric kidneys is. I am awaiting a reply. As well, Sharon Duncan promised she would contact her counterpart in Halifax and find out whether-should we relocate to Halifax-I could expect a cadaveric kidney sooner than the five years expected here in B.C.
Now it is back to waiting-waiting for a ray of light, of hope; waiting for responses from strangers elsewhere, opening up new avenues of remedy. At least I can look forward to an interesting few weeks.
If nothing works out, well, it's back to facing the inevitable as we all must-sooner or later.
20 January 2000
Will the suspense ever end? Will the cul-de-sac ever open up? Now I have been thrown a major curve by the head of the B.C. Transplant Unit, a double-edged curve, if that is possible.
Oh, to be sure, he was pleasant enough when we, my rejected donor and I, went to see him. But there was no good news to be had from his words.
What I am caught in is a) a moral trap, and b) a Catch-22 dilemma. Neither is solvable without risk or serious damage.
The moral trap is typically Canadian in design. In Europe, my native country Germany especially, I would have been told in tough terms that I had little moral right to expect a kidney from the long cadaveric transplant list. There I would have been told that, hell, at seventy-five I had lived a long and fruitful life, and that it was time to defer to someone much younger, with his or her whole life ahead.
Not here in Canada. No. Here the head of the transplant unit ASKED me what I thought about such a situation. What was my reaction to the moral scenario?
Naturally I waffled, hemmed and hawed. A clear-cut answer, well, of course I would defer to a younger person-this path I did not choose because it just wouldn't have rung true. There are no black-and-white issues here. If I chose the waiting list, then I am morally defunct. If I chose the noble route and decline, I would be on moral high ground. It's a case of the old cliché, damned if you do and damned if you don't.
I did not appreciate in the least this clanger dropped on me.
The Catch-22 dilemma was not moral but physical. Before I would even accepted on the cadaveric kidney waiting list, I would have to have an angioplasty performed on my arteries to remove the ischemic heart disease.
Well, why not go ahead?
Simple, Mr. Hesse. The dye injected to make the obstruction visible could well bring about a renal shutdown, and you would have to go on dialysis immediately. What was the chance of a renal shutdown?
Well, perhaps 30 to 40 per cent that my kidney would stop functioning because of the dye injection.
That was the Catch-22 dilemma.
I left, my head spinning.
Now I was left truly up the creek.
The only choice I have, it seems, is to opt for the risky angioplasty, risk a renal shutdown, shrug if the renal shutdown occurred, and grind my teeth and say, to hell with the moral high ground, I want to live. Who is to say that the young person receiving a kidney instead of me is getting the better deal? There are too many variables, too many uncertainties, and there is too much risk involved.
The only good aspect of the interview was that the other transplant physician, who had originally turned me down flat without any choice at all, had based his rejection on mostly the over-age factor-anyone older than seventy, forget the transplant. The head of the unit differed. He would have none of that, except, except, except that while he appeared as the one transplant physician not averse to old-age transplants, he also made it morally reprehensible for me to join the young waiting crowd for kidneys.
On my way out of the transplant unit I asked the co-ordinator what the word from Nova Scotia was.
Well, it seems there are 315 people on the cadaveric waiting list there, expecting to wait 2 1/2 to 3 years. About half the time. But, according to her, no one had ever relocated to Nova Scotia or elsewhere to seek a shortcut to the longest waiting list in Canada (in B.C.).
So what now? Sip tea and throw the towel? Or stand up and fight some more, ignoring the moral dilemma? Anyone have a good opinion on that?
09 February 2000
Short quantum leap forward.At 12:30 I went to the surgical day clinic at Vancouver Hospital to keep an appointment in Samarra, with Dr. Jerry Chen, a vascular surgeon. My nephrologist had decided it was time I had a vascular-access fistula installed, anticipating my need for dialysis somewhat later this year.
I thought I had gone to undergo the "surgical procedure" with equanimity and calm, but the blood-pressure reading told the truth behind the faÁade of imperturbability I maintained: 200-odd over 90 or 100 or so, way above my normal 140/65 readings. The head pretends, but the heart churns beneath, n'est-ce pas?
The surgical team was efficient: for them it was a minor routine procedure-for me, a rather cataclysmic event. I was about to cross the Rubicon forever, entering an unknown territory forever beyond the fail-safe level. Up until now I was able to pretend, hope, that somehow, my pre-dialysis state of doing very well with chronic renal insufficiency would continue week after week, month after month, perhaps even for years to come.
No more. As Dr. Chen had explained, I needed my fistula in a less-than desirable location on my left arm: He could not single out a lower-forearm vein, so had to travel up to the crook of my elbow (point of two-inch incision), so the fistula would form in the middle of my upper arm.
The procedure was simple-to me-and blissfully short. I received a tranquillizing injection, then a local anæsthetic. My left arm was extended at right angles to my flat body on the surgical table. The operating-room nurse blocked visual access to the arm by propping a green cloth against my eyes. I was unwilling to look. I had once watched an entire cholesystectomy being performed on a friend of mine years ago (gallbladder removal), and it didn't bother me, nor did I faint at the sight of the scalpel slicing open the belly.
My own surgical procedure was a non-event as far as fear or dread was concerned. I felt little or nothing as Dr. Chen's scalpel opened by inner arm and started splicing vein and artery together in a loop to increase the pressure in the vein, thus facilitating the future dialysis. (Starting off with peritoneal dialysis was less than an option for me: it would have necessitated four or five changes of peritoneal fluid a day, plus the attachment to nocturnal continuing peritoneal dialysis at night: a lot of work, and it would have required another surgical procedure to make a hole in my abdomen.)
It took about 45 minutes until Dr. Chen put in the self-absorbing stitches and pronounced the procedure a success. Routine for the team, uncharted territory for me. I had felt, twice a short, sharp pain in the affected area, but when I remonstrated, no one paid any attention, and it went away.
I remained flat out in the recovery room for one or two hours-my memory is somewhat hazy, as predicted by Dr. Chen-until I was told to go home.
My wife was waiting, anxiously of course, happy to see me, still compos mentis and feeling a little groggy. Friend Bill was waiting outside with his SUV to drive me.
Later that day, the pain started, as I had been told to expect. I swallowed two Tylenol-3 tablets-big mistake. I began feeling lightheaded in a most unpleasant way, and fear of death from cardiac arrest washed over me. But I slept on my back, keeping my left arm elevated with an additional pillow beside me.
The morning after was a real suffer-all-ye-God's-chillun morning after. The pain was bearable, but the lightheadedness, dizziness, and irregular heartbeat were pervasive. I kept calm, not wanting to alarm my wife unduly, but I could not deceive her. Then, just after a perfunctory lunch when I decided I would never see the end of this day alive, the condition abated. What happened? Who knows.
10 February 2000
Arm hurts when moved; sleep frequently interrupted by short, sharp pain in crook of arm. Bearable. Heartbeat back to quasi normal.
17 February 2000
The pain is diminishing gradually, although the location of the incision makes moving my left arm somewhat of a chore, especially when driving.
But then, a week after the procedure, the irregular heartbeat returned to stay. I began to be short of breath when walking. What was going on?
End of February 2000
Irregular heartbeat rather bothersome. Subconscious fear of death dominates my days and nights. I cannot rationalize this FoD away; it eludes my intellectual and emotional grasp. This sorry mental state is worse than the condition itself.
A visit both to my GP and my cardiologist bring little enlightenment except for the reassurance by both doctors that irregular heartbeat is not dangerous. My suggestions that the fistula is directly responsible for my volatile condition and, thus, my state of anxiety, is stonewalled.
The heartbeat eventually returns to regular, but the shortness of breath continues and becomes more pronounced.
Suddenly I begin to feel like an old man. We walk in the neighbourhood for a minute, and I need to stop and catch my breath. Deep breathing is virtually impossible now. Occasionally I develop a dry, hacking cough. I do not recognize the classical symptoms of CHF-congestive heart failure, in particular an attendant, life-threatening condition called pulmonary edema (údúma), when fluid builds up in the lungs and the heart is unable to pump enough blood around, thus putting enormous strain on the heart muscle.
(The irony is that in the summer of 1997 I suffered the same condition, CHF, and had to be taken to hospital emergency. At that time, I had been taken off furosemide, the diuretic. After an injection of 80 mg furosemide intravenously, I peed like a champion all night, shedding about four or five litre bottles of urine, thus eliminating the frightening condition. I went home next noon.)
So, pretty soon I told myself that this kind of life, without breath, was hardly worth living. I wrote a letter to my cardiologist, asking him to schedule me for an angiogram as soon as possible. Unfortunately, he was away on holidays.
31 March 2000
Friday evening. Shortness of breath persists. To bed at nine to read for an hour. But after 15 minutes in horizontal position, suddenly my breathing became worse and worse. I knew what it was: another attack of CHF with attendant pulmonary edema. No time to waste. I dressed, phoned 911, grabbed my medications, and became the temporary star in a nocturnal soap opera for a few minutes while firefighters arrived, then two ambulances with four paramedics.
Our good friends from down the hall arrived, with five-month-old baby boy. I quickly stroked the baby's cheeks while the paramedics wheeled me to the elevator, wondering whether I would be back.
I have not seen other men my age in similar circumstances, hence I don't know whether they panicked or remained calm. Analyzing myself as best I can, I know I was both terrified (suffocating from one's own fluid in the lungs is exactly like drowning underwater, I am told) and yet reasonably confident I might survive this second attack. After all, I had acted decisively in phoning for help.
The paramedics, of course, had inserted a needle in my right hand and had injected 80 milligrams of furosemide. But even after we arrived at the emergency of Vancouver Hospital, my breathing remained shallow and laboured. The drug was slow in getting to work.
I will skip over the next twelve hours, except to say that the medical care I received was exemplary: the ER doctor saw me right away after the initial blood work, the elecro-cradiogram, and an X-ray done by a portable machine. Then the resident internist arrived, a woman specialist, in the small hours of the morning. A few hours later, she and her chief, also a resident internal medicine specialist, with two other resident in tow, consulted over me. I was the centre of attention once again, a reluctant, superannuated, temporary, male starlet in a true-life ER drama.
This time, though, I was not tossed out at noon, as in 1997, told I could go home. This condition was more invasive and persistent, due to my vastly decreased kidney function. At one point, the original ER physician, as well as the resident internist had said I might have to be put on hemodialysis to alleviate the fluid buildup on my lungs. Lucky for me, the furosemide did what it was supposed to do.
Another unfortunate factor was the nagging angina pains during this CHF episode. Despite repeated applications of Nitroglycerine spray, it only very slowly went away after about eight hours.
Mid-morning I was transferred to a bed in the old Heather Pavilion of Vancouver Hospital.
01-03 April 2000
A four-bed ward, all heart-related cases. The little, daily drama scenarios of illness. The meals are surprisingly edible, though the vegetables are overcooked. I've been put on a fluid-restricted, no-salt diet, but the hospital kitchen does not understand n-salt, or it cannot comply. Macaroni-and-cheese, full of salt, but I do not receive a small envelope with salt, only one with pepper, enough to powder 1/4 of an egg. But these are small, unimportant complaints.
My lungs continue to drain the accumulated fluid, and on Monday, the third, I am allowed to go home, wearing a nitro patch, seeing my furosemide dose doubled to 80 mg a day.
Staying in hospital, to paraphrase an old bon mot, "concentrates the mind wonderfully." I have become rather aware of being mortal, although imminent departure is not indicated.
The nurse brings me a folder with literature about congestive heart failure and pulmonary edema. Useful, but not unexpected advice.
Back at home, I keep thinking how many lives I have already lived. Three years ago, after my discharge from hospital then, a title for a book came to mind, out of nowhere: How Many Times Do You Die Before You Die? I put together the book, with notations, aphorisms, concrete poetry, whimsical observations, little line drawings, playful images to assert my will to live, and my extreme luck in surviving.
How many times does one die before one dies? I am reminded of the proverbial cat's nine lives, and when I count my blessings, counting how many times I have had a brush with death, beginning with the first tender age of six weeks, I marvel at my fate. It went on from there, and every time I emerged somewhat bruised and battered, but alive.
10 April 2000
Diets are tricky propositions. All of them are designed to reduce weight, and most of them work less than well. In The National Post , Julia McKinnell has been describing her own battle with avoir dupois. In several weeks she has lost three pounds by following the latest fad diet by one French savant named Montignac. In my non-objective view, this diet is only a better-tasting diet than the dangerous and unhealthy, erstwhile Dr. Atkins: shun carbohydrates, eat lots and lots of animal products, especially fat. That so-called doctor was a food thug, wrong on every count.
This is the text of an e-mail message I sent Ms McKinnell when she invited anyone to join her for a sumptuous, weight-reducing Montignac dinner:
From: Jurgen Hesse [mailto:firstname.lastname@example.org]
Sent: Tuesday, April 04, 2000 12:00 PM
Subject: diner À deux
Ms McKinnell: I am down on M. Montignac's diet because it reminds me of the stupid and dangerous first diet by one Dr. Atkins-I nearly went into toxic shock when I ate nothing but German sausage. I gave it up and thought, Here goes a medical thug, and nobody takes him to court.
Will I strive to join your for a Montignac diner À deux, as you propose. Nope, not on your life. Here's why. Montignac's diet will work in the short run (shades of Atkins), but in the long run it's gonna have deleterious
long-term effects on your health. Guaranteed. All fad diet go the same route: promises, then splashdown.
Here's my micro history of fat/lean years: Born lean, grew up lean in wartime Germany (potatoes, some veggies, no fat, no meat). Then, first marriage, and I ballooned at 30. Kept my superweight for the next fifteen years until 45. My citizenship certificate photo when I was working at the news desk of The Globe and Mail in 1964-when it was Canada's best paper, bar none-shows a rotund visage. Then came slim-down and fatten-up-again years: maximum weight in 1965 was 222 pounds. Since then, steady decline with an occasional lapsus into what the Germans call having a "high stomach." I am now married for the fourth time-this time it's working-and am shedding pounds successfully at age 75.
How? The German diet par preference: FDH, meaning "Friss die Hälfte," meaning, "Eat half of everything you want to eat." It works.
I went from 222 pounds in 1965 to 84.0 kilograms this morning, which translates into, let's see, about 185 pounds.
My breakfast today? An orange (hang the 15 minutes, I say), followed by a soft-boiled egg, two slices of whole wheat toast with scrapings of the least saturated margarine, Becel, plus a dollop of SuperStore's ultralight apricot jam, no salt on egg but a dollop of mild salsa, cup of tea with 2% milk, half a tsp of Splenda.
Lunch today: four small new potatoes boiled, with a scoop of 0.1% fat quark, half a head of butter lettuce with fat-free lemon-dill dressing, one tbsp of fat-free yogourt over scoop of homemade apple unsweetend sauce.
All right, dull fare, I admit, but I eat to live, I don't live to eat-my motto.
Don't forget, please, that M. Montignac is an entrepreneur with a desire to make a retirement killing: his website is proof of that. If he were a true benefactor of mankind, he would share his recipes (I still wouldn't touch them) on a pro bono basis.
The reason for my slim-slim FDH diet is medical: congestive heart disease, and it will be my lifesaver. I am shooting for 80 kilos on a frame of 180 cm.
I hope you find a dining partner(s), and long may your tastebuds relish the devastating assault on common sense eating.
I am proof you can go from pudgy to lean on a middle-of-the-road metabolism. Oh yes, I have shunned meat for six years now.
PS: What M. Montignac so shamefully omits to warn you about is that your arteries will accumulate tons of crud so that, when you reach 40, 50, 60, or 70, arteriosclerosis (ischemic heart disease) is a virtual guarantee.
Regards, Jurgen Hesse
There, I've said it all. No acknowledgement, no reply from Ms McKinnell. Later I found out that my e-mail was lost forever in cyberspace. No matter, here it is, for posterity.
Let's go back a minute. I need to restrict my salt intake drastically, and with it, the amount of vegetable fat. Salt retains water in one's body tissue, and fat, well, it stores ever-so-readily to produce the dreaded midriff bulge, spare tire, whatever. Once part of our cell structure, fat globules are very hard to banish: that's why people who never leaned out in their lives and grew up obese, cannot ever expect to lose the accumulated fat in their body mass.
Heroic diets, to work at all, mean starvation pure and simple: Friss die Hälfte , eat half, as the krauts say. Staying hungry is the most difficult régime to follow. That is why those trendy (fad) diet gurus are reinventing the wheel, from Atkins to Pritikin to macrobiotic, every which way but to a slim silhouette.
I am only an affected layman as far as diets go, but my experience, eating less, curtting out salt (specifically indicated because of fluid retention problems), reducing fat, severely limiting carbohydrates, cutting out animal products-these are the conditions under which I can expect to keep my weight down.
The benefits of being slim are immense. My diabetes has dwindled into insignificance since I lost weight. My heart is pumping better; the irregular heartbeat is gone. I can walk more briskly. I can breathe more freely.
There may be other, attendant benefits from having lost weight.
I am down to, it seems, 85 kilograms, or 184 pounds on an athletic, big-boned frame of 180 centimetres.
I am told that my ideal weight ought to be less, say around 80 kilograms, but I appear to be stuck now for a week around 85 kilos.
Let me tell you about scales. Accuracy is paramount, and during my research I went through four scales: one mechanical/analog; three electronic/digital in price ranges (Can $) between $14.99 and $69.99. None of them seemed to be reliable, showing different readouts several minutes apart. All were returned for refunds.
Then I went to a medical supply company and found, for $105 (ouch), a hydraulic scale with needle readout. Bang on. I took it home, and every morning, after getting up and peeing, wearing only underpants and undershirt, I weigh myself.
But I caught myself in a self-made trap.
Because I eat no added salt, practically zero fat, fewer carbohydrates, more vegetables, I still eat too much of everything. I really need to cut my total food intake by 50 per cent. And that is hard to accomplish, because the signals from the stomach ("Ease off, I have had enough to feel sated!") are tardy. These signals begin to send their "replete" messages only after having eaten for twenty minutes, after I have finished eating.
That is the dilemma. But I will resolve it.
14 April 2000
Finally: a visit to my cardiologist.
But first, a relevant dream during the night. I was passing through some kind of hospital (in my dreams, nothing is ever clear-cut, an element of shadowy interpretation lingers) and felt I needed to go to the bathroom. There were a bank of bathrooms. Toilets, really, or little cubicles with two opposite doors, none of which could be locked.
I entered one cubicle and found a man squatting opposite a white-dressed nurse holding a long syringe. She was just withdrawing it from the man's arm (he was my alter ego, I decided after waking up), and a thin jet of liquid spurted against his arm. I began to cry in wracking sobs, but the sadness only last two seconds.
Shift scenery to another place, undefined: I was waiting to talk to my confidante, the renal social worker. She needed to find out about my crying spell.
End of dream. End of symbolic start of hæmodialysis.
I remember being shown, during my introductory tour of the 24-bed hæmodialysis unit at Vancouver Hospital/Health Sciences Centre, a rather thick needle at the end of a lengthy tube, say six inches, one of the two that will be placed into my fistula when the time comes.
Obviously the afterimage of this needle/tube created havoc in my subconscious and surfaced as a dream. Normally I am not afraid of needles. I inject myself every week with an, admittedly, very thin and short needle on a syringe, no problems.
But this big-diameter needle monster looms. Will I be heroic and refuse an anæsthetizing injection where the two needles will enter the upper left arm? Brave the momentary pain, or seek painless insertion?
My body weight remains steady around 84 kilos. Pride of achievement! Eating salt-free food is not hardship. Yesterday I made small white rolls, called pane all'olio. Quick to make, delicious even without salt. The recipe is in the appendices.
Now to the visit with my cardiologist.
Yes, he will schedule me for angiogram, or an angioplasty, including stenting, or a bypass operation within two to three weeks.
"If you were my father, I would recommend that we go ahead," he said, and that would have swayed me at any rate.
There are three distinct possibilities as a result of this invasive procedure, during which a special surgeon will explore both the left and the right artery for the extent of blockage.
What are the risks of an angiogram procedure? One in 12,000 patients dies from it, he told me. Good odds. I am not worried.
At least, right now, 2-3 weeks is a long way off. Tension and concern will increase once I have a date for the procedure. Will my kidneys pack it in because of the injected dye? Then it's dialysis time for the rest of my life, unless a kidney transplant becomes a reality.
I am very aware that, in a short time, my life will change irrevocably, without a chance for parole even on best behaviour. All my tactics designed to prevent the onset of dialysis have run their course. I have no idea whether my vegetarianism has been beneficial in this regard. What I do know is that I should lost weight years, decades, ago.
I blame myself for this lost opportunity, at least for much of the weighty years. On the other hand, if North American medical people were more aggressive, insisting on rigorous diets and healthy lifestyles on threat of discontinuing their service to our disintegrating bodies, much harm could have been prevented or forestalled.
Is this a reasonable expectation to make of our medical doctors? I remember fondly three doctors who were aggressive in their demands that I stop smoking, when I still was, and that I lose weight when I was overweight. One was a Dr. Willkie, a Scotsman, the other a Dr. Piper, a Seventh-Day Adventist, the third an ear, nose, and throat specialist, Dr. Raben.
But did I heed their warnings and recommendations? No. Instead, I changed doctors.
Now, with the threat of sudden death from CHF and pulmonary edema hanging over me should I ignore fluid buildup, I exert self-discipline and do what I ought to have done thirty years ago: Eat less, eat less (no added) salt and less fat. Will I be able to benefit from this latter-day healthy régime? Of course, although closing the barn door after the horse has bolted is what most people-myself included-do very well.
I met an old friend again at a dramatic reading. He's put on a few pounds, but at eighty-two looks well and in good shape. Perhaps he is blessed with good fortune, but one does not ask why people are healthy. Not done. Looking at his rosy cheeks, seeing his carefree manner, I thought, "Well, seventy-five is not that old. If I can hang in there on dialysis for five years until a kidney pops up for transplant, I will be only eighty."
26 April 2000
Despite all the preparations and the emotional adjustment, when I saw Dr. C., my nephrologist, today his message came as a massive shock: I have to go on hæmodialysis, better sooner than later. Not in four weeks, but in a few days, and the renal nurse offered me 28 April as the first day of treatment. I declined. I need still more time to adjust to the end of a life unhampered and unmarred by dialysis.
This sudden confrontation triggered a crisis with my partner-details are irrelevant-and I begged for a week's grace. I feel like someone on death row, asking for postponement of the inevitable.
Intelligence, sophistication, being an intellectual-all this does not prevent us from reacting to disastrous news with equanimity. I will have to calm down and accept my fate.
I wish I could go into the inner turmoil that has descended on me, a situation exacerbated by my partner's unwillingness to accept my dialysis. It is irrational on her part, and it affects me more than I would like to admit. I was hoping for cheerful support. What I get is desperation. It has created a real dilemma for me.
What will she do when I leave her alone for five hours three times a week? Enough said. This is a story about me, not my partner.
Also I do feel progressively worse from my escalated creatinine count, exceeding 700. It will now spiral upwards, as Dr. C. predicted.
Perhaps, if I wait another week, as I get weaker and more tired, as my nausea increases, I will welcome the advent of dialysis. Right now, still, dialysis is an unknown quantity, and all the upbeat promises by the renal professionals cannot persuade me to look forward to it.
Dialysis, unless and until a donated kidney becomes available, is an irreversible step. I keep thinking of that American writer-James Michener--who, at age 93, refused further dialysis treatment and died within three days. I have no details of his illness, don't know why he stopped receiving dialysis.
Moaning and groaning, complaining-all this does my psyche no good at all, and the worst of it is that I feel alone in my anticipatory misery.
10 May 2000
The anticipation, the anxiety, was worse than the event. My old pre-dialysis life ended yesterday as I headed to Vancouver Hospital's hæmodialysis unit in the Laurel Pavilion after lunch, partner in tow. She was more upset than I, but I was not Mr. Calm either.
There are 24 dialysis beds in the unit, going in three daily shifts. They gave me a window bed, what an honour, and the charge nurse talked to me at length. But I was waiting for the two needles, of course.
They gave me a local anæsthetic injection, and the first needle went in without a hitch, or pain. The second needle slipped off the blood vessel, so suddenly there were five nurses around me, the charge nurse took over and managed to insert the needle. The anæsthetic had by then worn off, so I made a face and grunted when it went in. There had been talk to postpone the dialysis for two days and try the second needle then. As it was, my "lovely fistula," as the nurses called it, proved adequate, and I was dialyzing, feeling absolutely no sensation.
The attention I received was exemplary. The two renal clinic nurses came visiting, and my nephrologist, whom I rather like, also dropped by, promising to come back later-and he did. But the highlight was the clinical dietician, whom I met for the first time. She was well-informed and interested, a true professional.
While I waited for the second needle to be placed my angina kicked up a little fuss, but I ignored the pain, and it disappeared soon.
Lying without moving much-the arm with the vascular-access fistula must be kept still, or the needles might pierce the opposite side of vein and cause pain and a massive bruise, also said to be painful.
Opposite me lay a big woman, whose face remained hidden throughout. Every half minute or so the red light on her machine would blink and a beeper would sound, and a nurse would hurry to fix whatever was wrong. I couldn't help thinking that she was a near-terminal case.
I now know why patients bring blankets-the unit is kept very cool. I will bring, next time, tomorrow, a special reading pillow to put behind my neck. Because I will read, not watch television, nor listen to a Walkman.
My times will be Tuesdays and Thursdays at 5.30 p.m., and Sundays at 1 p.m. After I have settled into the routine, say two months, I will transfer to the community dialysis unit where the healthier cases go.
After two-and-a-half hours the needles were removed, and I got to my feet, watched by two nurses. I felt a little lightheaded but steady enough. My weight was down from 86.2 kilos to 84.7 kilos, fully dressed.
I have decided to ignore the advice and take our car, drive home myself. To that end, I have traded in my 97 Toyota Tercel 5-speed for a 1990 Acura Integra, an automatic. That should make driving easier.
13 May 2000
Last night-catharsis. I broke down in front of my partner who listened silently, with great compassion, as I dissected my emotions, at that time all negative, about being attached to a machine every second day. This is an e-mail message I sent to a friend about it, a fellow writer, who had originally complimented me on my positive outlook.
"Yes, well, my positive outlook is the goal, because moping and tearing my hair would exacerbate the procedure. Instead, last night I came up with way of describing dialysis-it's pro-tem purgatory, where not your soul but your body is cleansed of toxins. It resembles the legend of Sisyphus who rolled a boulder up the mountain by the sweat of his brow, only to be defeated before reaching the summit as the boulder slipped out of his grasp and thundered downhill again. So Sisyphus began again. That is dialysis, temporary and fleeting, like-if you want to be prosaic about it-washing your car. Once clean, it gets dirty very quickly. I have been thinking of asking the attending nephrologist to have a nurse slip me a timed Mickey Finn, timed to knock me blotto for four hours, so I do not have to be aware during the attachment. Somehow I feel I won't get one. Perhaps they can slip me some methadone or whatever, to dull my awareness."
That pretty well sums up my feelings today. Yet I found my equilibrium once again, and I will not give in to despair. But really, the scene in this dialysis purgatory is one Dante Alighieri could have described. Its worst aspect is that nothing is ever resolved by dialysis, only postponed . . . namely life itself. We prolong our existence, hoping that someone else's unfortunate and untimely (all death is untimely) death will provide us with a kidney for a transplant. We do not wish anyone to die for our benefit, yet we hope that, should someone die, he or she will have provided for a donor scenario.
It's not that I don't feel better after dialysis, I do, and I appreciate it. And certainly all the medical professionals at our hæmodialysis unit are exemplary, cheerful, supportive, caring. I spoke to Arlene, a no-nonsense nurse who has been slipping needles into dialysis patients for seventeen years and still likes her work. Well, she said, some days are not so good.
This is being written after only two treatments, or "runs," as they are called in the unit.
The second run was rather painful, when, after half an hour, the arm with the two needles started to hurt quite uncomfortably. Arlene explained that this sometimes happens in the beginning, and that it will gradually disappear, this pain. I did not ask for medical succour but decided to try to ignore the pain. It worked, to a degree, sort of like going out of your body and looking at yourself, and say, "See, see how Jurgen's arm is hurting; will he be able to stand it, or will he begin to whimper and make a spectacle of himself?"
It also helps to think how fortunate even we dialysis patients are, compared to the hundreds and thousands of victims of ethnic-cleansing brutality, the famine and deprivations in Ethiopia-all the miseries of the world in this day and age.
But we have been spoiled by painless dentistry, painless surgery, ingesting medications for every imaginable woe that befalls us. We have not been prepared, nor have we been able to prepare ourselves for such a cataclysmic events as hæmodialysis, a deferred prison sentence without having committed a crime. It is punishment in search of a motive.
You know what's coming down, in the vernacular, but when it arrives, the treatment, we are ill prepared to deal with the inevitability, the inescapability of it.
So I revisited my earlier, months and months ago, fleeting thought of refusing dialysis treatment, letting nature take its course, and until the end of the second treatment, "run," that's all it was, a fleeting but unreal thought. Suddenly, after three hours of painful cleansing of my blood, the idea resurfaced. How would I proceed? Would I have the courage to let myself die? Did I have the moral right to make my partner a widow?
I know all the arguments, pro and con, all the justifications and philosophical culs-de-sac. No priest can help me. I need to argue this out with myself, within myself.
I have to interrupt now, I am getting too maudlin. Get a grip, you pessimist-optimist. Let optimism reign and relegate pessimism to the lower shelf, visible but not dominant. Think of Rwanda where people were hacked to death with machetes. Repeat cliché: Count your blessings. There. Works.
14 May 2000
Slept well. Today at 1 p.m., the third dialysis, one in a long string to come, never-ending, a prison sentence without a chance for parole despite best behaviour, and only a faint hope clause at the end, a chance to escape into transplant.
Do I sound morbid? Don't mean to, really, just wide awake and aware of what the future holds in store.
Here's my plan. Find out where in British Columbia I can receive dialysis after due notification, then plan the long-promised trip to my wife into the Interior: traveling one day in leisurely style, then stay overnight, next day dialysis, then travel again. Perhaps that will work, although I understand that dialysis facilities are usually operating at full capacity, so this may be a pipe dream at best.
15 May 2000
A step-by-step description of what the dialysis people a "run." I call it treatment. Whatever.
You arrive at the appointed time and sit among other patients, waiting to be called in. Eventually a nurse comes and calls, or beckons. You go to your bed, deposit your trinkets, and walk to weigh yourself: this is called the "wet weight," meaning you are full of excess fluid. Mine yesterday was, well, I forget, and my ideal "dry weight" after a "run" would be 84.5. So far, I have always exceeded my dry weight after a run. Good.
Then on to the bed, as the nurse prepares her needles. I do not watch what she does. She gives me a local anæsthetic injection, so I hardly feel the needles slipping in. The upper needle never is a problem, but the lower (artery?) needle is trickier. Twice now my nurse had called for help in placing it.
Then the machine kicks in and my blood flows. I am asked to hold, for a minute, the small-diametre hose through which my blood flows. It feels warm-body temp.
Then I lie back and adjust, while my forearm is strapped to a stiff board, so I cannot inadvertently bend my arm and nudge the needles. My right arm remains wrapped in a blood-pressure cuff; the dialyzing machine takes my pressure automatically every half hour. The goal is to keep the pressure nice and even, not jumping around.
Then its boredom time, for me, reading with on hand, not as easy as it sounds, but it works. I ignore the overhead television set, the cable fees paid for by the Canadian Kidney Foundation.
The nurses change, the original nurse never takes me off the machine; another one does that, four hours later. So far, they never miss the end of the run, although how they know that to the minute, I don't know.
One of the nephrologists may come around and ask how you are doing, he may adjust your medications. Things of that nature.
So the time passes with the speed of a snail. Being impatient is stupid, so I pretend I enjoy the run. Halfway through the first few runs, my fistula arm began to hurt. Ignore.
On Sunday, yesterday, the dialysis machine kept beeping, and about ten times the nurse came to make an adjustment to the flow rate. Not good enough, so another nurse came and, she said later when I asked, "fiddled" with the lower needle. The flow rate is fine again; no more emergency beeps.
And so it goes, Kurt Vonnegut would have written, had he ever been a dialysis patient.
When the run ends, spirits soar-freedom beckons again. The finishing nurse prepares her paraphernalia, slaps (well, places) two adhesive strips over the punctures (needles still in), fixes them, then pulls out needle 1, holds down firmly, then pulls out needle 2, also pressing down firmly, both of them under constant pressure for about ten minutes, until the holes have sealed themselves.
Occasionally, a patient's holes do not close for as long as an hour, and the nurse told me they don't know why that happens.
Then I get to my feet and stagger a little, head somewhat woozy, to obtain my now dry weight.
Then it's outta there, presto.
Not much happens, yet much happens. Not as contradictory as you may think. Not much? Boring routine, occasionally enlivened by minor crises (hurting arm, needle placement, tara). Much? You are given another pro-tem deferment from death row. Brutally spoken, but true.
We are under a death sentence, and only those indefatigable doctors, nurses, and support staff keep us alive every two days.
So what if?
A brownout? A blackout? Does the hospital have emergency generator that keep our machine going? I dare not ask.
An earthquake in this city? The so-called Big One?
A fire? A flood? An armed invasion by terrorists?
We are in God's hands, and speculative terror does not reside in my cerebrum.
16 May 2000
I sense a change in my attitude from moderately fatalistic to cautiously accepting the inevitable. Cerebrally and intellectually I realize that an attitude of acceptance is the only chance I will have to be a successful dialysis patient. Emotionally such an attitude is much harder to pursue, because I am a fighter and a born rebel, and any surrendering to a lifelong sentence of pro-tem purgatory, i.e. thrice-weekly dialysis, is contrary to my nature. I have seldom, if ever, gone along with the status quo, whatever its setting, whatever its implications. Always question, always dissent, always come up with a third alternative.
Once my emotional makeup has to accept that, this once, there is only a distant second alternative, a kidney transplant; a third alternative, i.e. not dialysing and therefore dying, is unacceptable to me at this stage. That may, however change, and I keep remembering how James Michener decided to go that third route when dialysis became too much of a burden for him.
Dark thoughts, at present kept at bay with equanimity and relatively good spirits.
One thought, however, persists: Our North American medical system is splendidly functional and efficient where it concerns dealing with a symptom. There are whole armies of health professionals, all of them dedicated to alleviating your symptoms and trying to repair damages.
In chronic conditions such as cancer (and that always has a built-in remission factor, which kidney failure does not) and renal failure, the health professionals expect their patients to deal with the emotional turmoil largely on their own. Ah, but what about the resident social worker?
Well, my renal social worker is a tough cookie. Sympathy and vocabulary such as, "There, there . . . " is simply not in her makeup kit. Sometimes, just sometimes, I wish I had a shoulder to cry on, but, except for her, the health system is not really equipped to handle emotional trauma.
I remember meeting the assigned psychiatrist to the renal unit at VGH. Politely speaking, I considered him uncaring, uninterested, and ineffectual. Privately, I thought of him as a jerk.
Such callousness vis-À-vis the justified emotional trauma in kidney-failure and other terminal patients is a particular Anglo-Saxon failure; with that I mean that cold, British stiff upper lip in face of emotional turbulence and disaster.
Whereas, for example, the Mexicans are different. I know, for I have lived among them.
When word of my dialysis got around recently, none of my friends and acquantainces except one (more about him later) bothered to speak to me, ask me how I felt, what was involved in the procedure. Jurgen is sick, well, let's avoid him for a while, shall we? Too uncomfortable to handle.
Am I unjust, even harsh? Perhaps a little, but not wrong in my assessment. Everybody assumes you are on top of the situation, even if you are not.
The one old friend who telephoned before and after the first dialysis is my long-time CBC Radio producer, now retired. He understands what I was going through that first day. Even my sister did not bother to call and enquire-but she has her own set of emotional demands from family members, so she is excused, because I know she has always cared for her younger brother.
Where does that leave us kidney patients? I try to see my social worker whose function is mainly to listen, and then to dispense her conventional wisdom. Does she care? I believe she does, but the demands on her must be colossal: no one but people in need. No one gives anything back to her. All want succour. From where does she draw the strength?
Here is her reply, after I sent her these comments:
Thank you for sharing your recent thoughts and feelings with me. A couple of comments. First of all, I am not entirely surprised that friends/acquaintances have not been in touch to any great extent recently. That is not uncommon for a couple of reasons. Kidney disease and dialysis are very invisible and not well understood by lay people. You look just fine and so it probably doesn't enter others' consciousness that this new treatment is as challenging as it is. Many patients over the years have shared with me the same experience you are going through and in addition, have had the same responses from family members as well. A second point is that many people I have found over the years are uncomfortable with the illness of others (not dissimilar to North America's discomfort with death and dying). It is easier to put one's head in the sand than to look at the difficulties someone else may be experiencing because in some instances, it brings up one's own sense of mortality (which can seem very fragile at times). These comments are not meant to excuse the behaviours of others or downplay your very legitimate need for some support during this period; however, sometimes it helps to know that in the big picture, your experience is similar to other renal patients and that your friends are somewhat typical of other patients' friends (which may be disappointing as sometimes we hope that our experience will be better than the average).
Yes, I am certainly available for ongoing support (by phone, in person, or email). While there are a number of people struggling with dialysis in different ways, fortunately our program acknowledges the emotional needs of patients and we are reasonably staffed with social workers for that purpose. So please feel free to call upon me as much as would be helpful right now. As a professional, I take steps to ensure that I am able to be available to my patients as they need me without overextending myself so please don't worry about that. As well, as time goes on you will hopefully identify some nurses with whom you feel particularly comfortable and they too can be a source of support.
20 May 2000
What news! What staggering news! The news is old, per se, but brand-new to me, because I had the good idea to hunt and peck through the vast Internet, and came up with several web sites that told me, ipso facto, about several new methods of dialyzing.
1) Nocturnal dialysis
2) Daily dialysis
3) Daily home dialysis
New machines have been developed for home use during sleep, not dissimilar from nocturnal peritoneal dialysis, though vastly different in technology. The machine is delivered to your home, set up, you are trained, and at night you hook yourself up to your new cuffed catheter, dialyzing for the next eight hours in the low-flux methodology, slow and steady and gently cleaning your blood and removing accumulated fluid. This happens six night a week.
Advantages to 1), 2), and 3) are: better dialysis with fewer side effects; reduced blood pressure medication; no more chewing TUMS tablets for added calcium; less nausea (if any), or headaches.
Disadvantages when using the cuffed catheter: danger if infection by contaminating the connection; perhaps more frequent chance of blood clots.
During nocturnal dialysis operating times, your machine is connected to a central computer, monitored by a technician who will alert you if the machine goes offline or the power goes off. Up to 30 dialysing machines will be monitored by one computer.
You will be trained to, and expected to, clean the machine after every use and to get it set up as well, so far, a process estimated at about 90 minutes per session (run). In the future, self-cleaning machines will be provided.
One of the biggest costs in dialysis is the replacement cost for the filters. Right now, after after run, my used filter is tossed out. In nocturnal dialysis, the patient will be expected to collect a week's worth of used filters, take them to a central location to be cleaned and sterilized, and returned to the same patient for re-use. This way, a patient could get away with having to use only twelve filters overall.
One problem I read about self-dialysis is how to dispose of the cleaning fluid after it has passed through the machine. Is it toxic? Dangerous if emptied into the toilet? I don't know the answer.
Daily dialysis: Instead of three times a week for four hours each, you present yourself six times a week at your hospital or community dialyzing centre, get hooked up either through needles or via catheter, for a high-flux run of one hour a day. Rather more cumbersome than the thrice weekly runs. As far as I know, this option is not being contemplated for Vancouver. Even I can foresee a number of gargantuan logistical and scheduling problems if this system were to be introduced.
In the literature I read, the concept of self-needling was mentioned. Would I ever be able to put in the two needles? Why not? Although I sort of blanch at the notion. This would speed up the daily dialysis concept.
Home dialysis is a better variant of the same idea. You either needle yourself, or hook up to the catheter every morning for an hour of high-flux dialyzing. This method is already being practised in the United States, according to one patient who explained his process online.
My nephrologist, when I asked him about nocturnal dialysis, said that perhaps by the fall of 2000 the system would be introduced to B.C., likely either St. Paul's or Vancouver Hospital.
I made it clear to him that I was very motivated, and he-what else-smiled benignly.
It seems to me that by no means all patients will be eligible for nocturnal dialysis, only those in generally good physical shape and adequate manual dexterity to handle the machinery and the hygiene.
It is clear that there will be hurdles to overcome until the nocturnal dialysis system is in place and functioning smoothly. The logistics are formidable, as are the capital cost of the machines, the training of staff and patients, and the setup of the electronic components (central monitoring computer, and what happens when one or several machines malfunction, stop dialyzing, or other mishaps occur). Will a technician roar up on his fast Honda motorcycle, tools in hand, and attend? See what I mean?
On the positive side there will be savings, eventually, in nursing, technical, and ancillary staff in current dialyzing centres (hospital and community) because fewer permanent patients will be occupying beds and chairs, and the staff will be able to concentrate on newcomers and patients unable or unwilling to dialyze themselves.
Newcomers to dialysis, such as myself at this moment, will still have to spend up to two months or longer in the dialysis centers unless a trend will develop to have them equipped right away with cuffed catheter-an unknown factor to me, the layman.
But in all, self-dialyzing during sleep seems to me the best way out of a generally unpleasant situation, the zig-zag effect of high-flux dialysis three times a week, resulting in built-in obsolescence, so to speak: now your bllod is clean, within hours it becomes contaminated again. Up and down like a yo-yo.
Steady, low-flux dialysis, the way I read it on the Internet, avoids that effect. Eureka!
Well, not so hasty. Let us see the machines in situ first.
22 May 2000
I must have a slippery vein, or is it artery? As I mentioned earlier after 09 May, the very first time the nurse was unable to slip the second needle into my brand-new fistula. It's happened twice since then, and every time, the nurse on duty with the magic touch had to be called. Sunday, yesterday, was particularly difficult. It took more than half and hour to get me connected.
The first nurse called a second nurse. The second nurse was unable to connect either. With two bandaged holes in my arm, the hotshot nurse was called-a no-nonsense type-and slipped the needle in without any trouble.
"Do not use a tourniquet when needling a patient," she said, to no one in particular. She was right. She just prodded my fistulated area, located the raised vein, and voilÀ, the needle was in place.
It's all in a day's dialysis, I guess. Despite all this poking around, the run was the smoothest yet, and there was no new bruise in sight next morning.
But I carefully refrain from making a face, or showing impatience, or indicating displeasure. These nurses have a thankless task to fulfill, and I am immensely grateful to all of them, without exception. I just hope there aren't other, less thankful, patients who cannot stop showing their bad humour when things do not go as smoothly as expected. Hot news flash:: The phone rang, and I was invited to present myself on Tuesday, May 30, for the long-awaited angiogram, to be followed in the late afternoon by the regular dialysis run. A sort of long day ahead. Now I will find out to what extent my artery, or arteries, have been contaminated by plaque buildup. Will Dr. R. be able to fix the narrow tunnel with a balloon inflation, will he insert one or more stents (is that the name?), or will I need a bypass op?
The second-guessing game is afoot in force. Why is that? Why do we torture ourselves with negative anticipation?
29 May 2000
One day before the big event. I feel calm and relaxed in face of potential remedy, on the plus side, or disaster, on the negative. Will the invasive procedure enable Dr. Ricci to remove (crack) the plaque of my arteriosclerosis, or has it advanced to the point that a bypass op is inevitable?
The dialysis sessions have, amazingly, become almost routine events. My fistula has matured and is adequate. The worst aspects of dialysis are twofold. One is the boredom of lying flat, essentially unable to move, the arm connected via two tubes to a machine. The other is the hovering feeling of doom, the realization that this is the end-scenario, despite all the positive demeanour of the health professionals.
Yesterday, Sunday's run, I suddenly went into a potential, anticipatory, apprehension overdrive. What if , a scenario never far from my expectations: What if, for example, a natural disaster were to occur while I am connected? An earthquake; an internal hospital; a fire, a bursting water pipes; or toxic leaks from somewhere?
What if the nurses were to a panic and run off, saving themselves? Not that I expect that to happen, but any number of manmade or natural disasters could prevent the nurses from terminating my dialysis either on time (after four hours), or before in an effort to evacuate the patients to safety.
Would I be able to disconnect myself? How much blood would I lose were I just to rip out the two needles and clamp my right hand firmly on the two puncture to prevent bleeding to death in minutes? I dare not ask just any nurse about such a dread situation. They might take it rather amiss, or just play it down as unlikely.
Perhaps I can ask a down-to-earth nurse such as Arlene, who might just give me a no-nonsense. All my life I have played around with what-if scenarios, and this destructive second-guessing is an unshakable habit. Not that you can prepare for anything, because when disaster occurs, it comes in a different guise from that which you have so laboriously designed.
But as a general rule, it would help to know what options are open. I have always been self-reliant, and the absolute worst dimension of dialysis is the total dependence on strangers for your survival. We all expect human error to occur sooner or later, and I want an escape hatch.
30 May 2000
Let me sum up the dreaded angiogram and angioplasty-no sweat. Up at six, at VGH at seven, on operating table at eight fifteen, off table and in day bed at nine thirty, all fixed up with ballooning and stenting in place, prognosis "very good." I stayed flat until two thirty, was cranked up into semi-sitting position, handed a sandwich, requested immediate dialysis, wheeled up to dialysis unit upstairs, connected to dialyzer by three twenty. I was impressed.
The procedure was smooth and elegant, from my perspective, the nursing staff exemplary despite the assembly-line atmosphere. After all the anticipatory anxiety, I sing my praise of modern medicine loudly and gratefully.
One additional day of rest to favour the incision and the plug that seals the puncture in my femoral artery. On 22 May, today as I write this, it's off for a peppy walk, and to see whether the atherosclerosis has abated. Can it be really that simple?
Facit: Time to come to a finish. What will happen now is predictable, but the worst aspect of my entire kidney dilemma is behind me. My kidneys are essentially inoperative, and I am kept alive my a complicated and complex and very expensive system of keep the body functioning with temporary measures until it gives out at last.
Perhaps here is the place where I want to pay tribute to the late CCF and NDP leader Tommy Douglas and his counterpart outside politics, the late Mr. Justice Emmett Hall. Both men are considered, and rightly so, to have been the father of modern medicare. Their dedication to setting up a system of tax-funded public health without discrimination against impecunious citizens can never be overvalued-it is exemplary. Had medicare not been put in place in 1960 in Canada, it is a safe assumption that by now I would be long dead, victim of the misfortune of not having earned enough money to pay for my survival.
It is a curious aspect of the human mind that arch-conservatives, who believe in self-help and want to dismantle the costly medicare system so they can lower taxes for those already earning excessive amounts of money-my bias is showing I suppose, but so what-that these legislators in provinces such as Alberta and Ontario, and federal political parties such as the Canadian Alliance political party, all are dedicated of a) chopping away at medicare and b) set up a private health care system that benefits only those with large disposable incomes. Their claim that private health care would take pressure off the public health system is specious and insulting.
The curious aspect comes in where those believing in self help at all costs often fall victim to their own blindsided conviction when they grow old and ill and, unable to afford to pay for their medical survival, die because the public health system they so vigorously helped dismantle, is no longer able to keep them alive.
There are many cases in point. I know of a family that has voted consistently for the political party whose agenda has been to dismantle the public health system, only to find that in their old age their own medical survival is costing the taxpayers tens of thousands of dollars. They would have been unable to pay for their treatments, had the public health system not existed. But they are continuing to vote for the public health foes, unable to draw the conclusion that, ultimately, they will have caused their own deaths, too financially restricted to pay for their costly treatment.
That is what I mean with curious aspect.
I will now end this account, continuing to go to the dialysis runs three times a week, hoping I have some years left to live.
For the next generation of kidney patients-and all other victims of failing organs-I can only express the hope that intensive medical research, especially the promising stem cell therapy, will provide a solution, and that within five, ten, or twenty years, diseases such as kidney failure, Parkinson's, Alzheimer's, diabetes et al. will have become a nightmare of the past.
One final reflection upon death that awaits us all, sinners and saints, healthy and ill.
My nine lives are stretched, by now, to the limit. Every two or three days I face exitus, the release from a fatal illness, but also the release from a life still worth living, despite the small victories over death three times a week. Temporary victories, they are, not to be confused with victory as we usually understand it-the defeat of an enemy.
But is my fatal kidney disease really the enemy, or is it humble destiny, to be endured in good spirits? When the shadow of the valley of death threatens to enshroud me in its fatal embrace, I recall King David's twenty-third psalm, most famous for its immense spiritual succour it bestows on those of us facing death close at hand.
I cannot think of a more suitable ending for this account but this psalm. It will be with me, this most suitable endtime prayer, when the time has arrived to bid adieu to this world and prepare to enter another unknown world.
For all my secular sins I hope, in the words of Heinrich Heine, to be given final absolution: "Dieu me pardonnera." - "God will forgive me."
Please read with me this balm for the wounded soul:
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I have done extremely well, so far, on three-times-a-week haemodialysis, and I was trained to set up my dialysis machine. For six weeks now, I have been dialyzing at our Vancouver-based self-care center, with 16 chairs, four nurses, and one technician.
We have been told that a proposal to the provincial government is in the works, proposing a nocturnal dialysis study be established. That takes capital expenditure on a large scale, hence the government may be reluctant, just six months or so before an election the current party (New Democrats) is almost certain to lose. The putative successors, the Liberals, have an unknown track record vis-À-vis health matters, being rightwing and prone to cutting back on our health service.
To my readers: What you see in this book is Canadian spelling as we practise (sic) it. I hope this will not bother you. American publishers seems overly skittish about not accepting anything except written according to The Chicago Manual of Style and Webster's Dictionary. Canadian spelling is almost identical to British spelling, and the UK is, after all, one of our mother countries (the other is France, of course).
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Any patient with a life-threatening disease, such as kidney failure, depends completely on the skill, the professionalism, and the goodwill of healthcare workers: medical doctors, nurses, and ancillary staff. Their dedication is what keeps us alive, and so I wish to thank profoundly all those whose ministrations have kept my life acceptable and liveable. There are many more: these are just those who treated me since 1985, the onset of my chronic renal insufficiency.
Dr. E.C. Cameron, Dr. Roger Sutton, Dr. Anthony Morrison, Dr. Tom Elliott, Dr. Hartmut Henning, Dr. Monte Glanzberg, Dr. David McLean, Dr. Jerry Chen, Dr. Donald Ricci. Renal nurse Barbara Atwater. Renal social worker Claire Skjelvik. The nursing and ancillary staff of Vancouver Hospital's (Health Sciences Centre) hæmodialysis unit-all of whom wonderful, caring, competent nurses and technicians.
Dave Palmer in Washington state has graciously added my book to his website: www.theblackriver.net/9lives.html
I hereby give express permission to Dave Palmer to publish, electronically, my book The Nine Lives of a Pessimist, in his website.
Any giving tribute, for me, would not be complete without mentioning, wholeheartedly, my most benign and potent spiritual leader, the late Benedictine monk Thomas Merton, whose works I have read with admiration and humility. His was the voice of utter wisdom, and it recalls the advice given me by another, living, Benedectine monk, advice for times of turmoil and pain, spiritual doubt and emotional upheaval: "Mut und Demut, courage and humility."
I thank you all.
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The gestation period for this account was five years until it was ended at the appropriate time, with the patient being put on dialysis and having had his ischemic heart disease repaired.
There was a first edition titled Chronicle of an Illness, superseded by the more racy title, The Nine Lives of a Pessimist. And why not? Some of us suffer eight deaths, or near-deaths, some hang in much longer periods until the final curtain descends.
On to technology. I started this account writing on a 486 computer, now old tech, switched to a much faster 400 MHz machine late in 1999. PC technology, employing Microsoft Word 2000 and a 600-dpi laser printer to print the master copy. Reproduction of the pages was, as always, on a high-speed laser copier, and the cover was designed by the author.
The number of pages precluded the earlier binding method, stapling (also called saddle stitching). This book, at 120 pages, will be bound using home-made low-tech: drilling nine holes along the spine, threading them together, gluing the spine, letting it dry, gluing spine again and wrapping the cover around it. Permanent binding, neat and cheap.
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