Destination Uncertain

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Most journeys begin in the mind with thoughts of destinations and the means of getting there. The thoughts may include dreams of distant places and reasons for going, what to take and what to leave behind, even what one might bring back.

Then, when the mind has done all the preliminaries, the body takes over and puts the plan into action. Tickets are purchased, bags are packed, goodbyes are said and, on the appointed day, the actual journey starts.

Somehow I got all this wrong. It was my body that began the journey by falling into a state of dramatic dilapidation. I woke one morning after several weeks of hard physical work on a domestic building project feeling an intense and overwhelming lassitude. After a few hours, during which this state did not change and my mind made very little effort to explain the situation, a doctor was called.

Unwilling to offer a conclusive diagnosis, he passed me on to the local hospital, to which my lethargic body was carried in an ambulance. This event gave great delight to the speculative villagers who assembled to watch my departure from the house.

The hospital’s doctors were clearly not willing to offer a definite diagnosis either, even after a succession of ultrasound scans, ECG’s, X-rays and other sharply invasive tests. Three days later they transferred me on to a bigger hospital, where the specialists were more decisive. Amid scenes reminiscent of a TV hospital drama, the new team took charge of me. Within half an hour I had been examined, scanned, subjected to an angiogram, told that I needed a triple coronary bypass operation, installed in the intensive care unit and sedated to await the arrival of the surgeon.

As the sedative was administered and my body subsided into the arms of Morpheus, my brain finally decided to make its first contribution to this journey. The thought that this situation was serious and potentially fatal crept into my waning consciousness. Life’s prospect suddenly appeared to be rather short, while the list of things still to be achieved stretched unbroken beyond a distant horizon. If the operation went well I might still attempt some of the things on that list. If not… well, there would be an awful mess for someone to sort out.

The morphine took over before my mind could construct any more coherent thoughts, or make any decisions.

The next stage of my journey began with an insistent, irritating female voice calling my name and demanding that I open my eyes. I wished the voice would stop. I felt tired and wanted to rest. The voice persisted and someone was smacking the back of my left hand. My brain made its first decision of this journey – I would NOT open my eyes for this harpy.

I was aware of other voices in the background, some familiar, others unknown to me, but my muddled mind could not distinguish what they were saying even though, somehow, I knew it concerned me. The harpy was there again, once more demanding that I open my eyes in between telling someone else I was just not co-operating and she didn’t know why. Her uncertainty pleased me; my resolve grew stronger and I wondered if I had the strength to bash her with my other hand next time she shrieked in my ear.

After a pause someone else took hold of that other hand, a soft, reassuring male voice said he knew I was tired and wanted to sleep, but if I could just let him know I could hear him it would be helpful. My mind said yes, so I squeezed his hand. He felt this, reassured me again that all was well and told me to have a good sleep.

The next time I woke, the surgeon was sitting on the end of my bed. I was attached to an amazing array of monitors and counted eleven separate tubes and wires plugged into various parts of my anatomy. The surgeon, who turned out to be a Norwegian, assured me that the operation had been a complete success. I wondered, therefore, why I felt so foul.

“But?” I asked.

Ah, yes, there was a ‘but’. My kidneys had failed during the operation and I was now being poisoned by my own waste products. But the other two doctors who stood beside him were renal specialists from another hospital and they were going to sort that out for me.

Against this added chemical onslaught my mind struggled to comprehend as I was lifted onto another trolley, wheeled to a waiting ambulance and transferred into the care of a new specialist team.

As the toxins gathered in my body, so the effects of the narcotics administered to relieve the surgical pain waned and I became fully aware of the disastrous condition of the body I had taken so much for granted for fifty years. Something had to be done about this. The medical team were working hard for my benefit but I hadn’t a clue what they were doing or why. This was all new ground for me so the time had come to start getting involved.

I heard one of the doctors asking where the man with the cabbage was and a few moments later he came into the room where I lay. The vision of a patient trying to conceal himself under the bedclothes with a large brassica amused me and I asked him if he had found his lost greengrocer.

“Greengrocer?” He asked, raising a speculative eyebrow.

“The man with the cabbage.” I said.

“Oh yes, that’s you,” he said and explained that the acronym for my coronary artery bypass graft was CABG. “We call that a cabbage.”

I realized that these people spoke a language of their own with a black sense of humor that I would need to learn. I had embarked, without realizing it, on a bizarre and mysterious journey with an uncertain destination, involving a succession of gruesome physical experiences and mental adjustments completely beyond my well-travelled experience. My mind made another major decision: to be an active traveler on this road, reasoning that if the patient is not positive and co-operative, what chance do the medical team have of producing a favorable outcome?

Hemodialysis removed the toxins from my system and my physical recovery from surgery began. Some function even returned to my kidneys and after a month I went home to a glorious welcome from my excited dog.

Home I might be, but many things had changed forever. I now had to take a few pills every morning and watch my diet. My kidneys were still vulnerable and certain foods could easily produce toxic overloads. At least my pump was working well and the scars left on my chest by the surgery were now healed and beginning to look less angry. In my mind, however, I was still struggling to accept the idea that I was no longer able to do many of the physical tasks which previously had been so routine and insignificant. It seemed intensely unreasonable that I now required so much rest and, because of the chest surgery, could not pick up even light objects like a kettle. Previously I had done most of the cooking. Now making a piece of toast was about as much as I could manage and reaching up to a shelf for some jam to spread on it was little short of torture.

Over the next few months my physical condition improved and I even dared hope that life might return to some of its former pattern. My wounds healed, my ribcage recovered so I could pick things up again, but muscles that had been idle for so long protested at unaccustomed work. I went to the gym at least twice weekly to get fit and soon resumed my work.

Around Easter it all went wrong again and the next stage of my journey began. Over the space of four days I went from feeling well and full of vitality to poisoned, aching and fighting to remain awake. My energy evaporated like steam as toxins accumulated in my bloodstream. My skin began to itch like a scabby dog, my joints ached interminably, my feet began to twitch and my ankles swelled up with retained fluid. I had retained fluid after my ‘cabbage’ and during one four-hour dialysis session had lost over six kilograms as the machine removed the excess. The prospect of facing all that discomfort again was clearly unattractive and my mind refused, at first, to accept what was happening.

A call to the hospital and a visit to the clinic were followed by more surgery to implant a catheter in my belly for daily peritoneal dialysis. New drugs were prescribed, dietary restrictions were imposed and life took another step into the unknown. My previous experience of dialysis had been unpleasant enough but the prospect of dialyzing myself on a four-times-daily basis for the indefinite future was like facing a very long dark tunnel with no reassuring light at its end.

The consultant said he would put my name on the transplant list, but not to hold my breath, it might never happen. I bought text books and learned about kidneys and how so many things are affected when they go wrong. I learned more of the strange, idiosyncratic language of nephrology so that I could ask questions and understand the answers.

In hospital a remarkably patient specialist nurse taught me the dialysis routine so thoroughly that I could do it with my eyes closed. Before I went home, a lorry delivered three a ton of dialysis fluids and other supplies to the house, and the spare room became a mini medical center.

The dog gave me another rapturous welcome when I arrived home and my journey began a new phase, life on dialysis. For this my belly was permanently filled with half a gallon of special fluid which I drained and replaced regularly through the Tenchkoff catheter the surgeons had implanted. Within a fortnight it became as routine as an oil change in a car is to a mechanic. Moreover this system had the great advantage of being portable as the fluid bags were disconnected and disposed of after each ‘oil change’.

But nothing is ever simple. Beside the practicalities of dialysis I had to adapt to a whole new dietary regime. Many foods were now toxic to me and therefore off the menu. Others had to be cooked differently to remove certain elements and there were restrictions on both how much and what I could drink. To enable the dialysis to work effectively a hundred and one different factors needed to be kept constantly in balance.  I saw a juggler on the television and envied the simplicity of his task; he only had five clubs to keep under control and they only did what he made them do.

Over the following weeks and months a new pattern of life evolved. There were occasions when something went wrong and we had a few moments of drama and excitement, but slowly, almost without realising it, my mind adapted to the limits of my reduced physical capacity. Perhaps this was as good as it was going to get.

In the early hours of a Thursday morning I was in a convent in West London, running a training course, when I got the call. The mobile phone I had bought in the hope of just such an event, and which I had never heard ring, suddenly came to life. I seized it before the third ring. “Is that Ian?” a bright voice asked.

“Yes.” I said.

“This is the transplant coordinator. We’ve got a kidney for you. Can you come in?”

The next stage of my journey began and eight minutes later I was on the motorway doing a hundred and ten miles an hour, heading once more into the unknown.

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