Goodpastures Syndrome

Too close for comfort - a near-fatal encounter, told by the patient

11. P3 High Care at the Provincial Hospital - further deterioration

(This is a true account of my experience with Goodpastures Syndrome, but a few people’s names have been changed, indicated by *.  My aim in writing this is threefold; first, that victims and families of people suffering from Goodpastures Syndrome can have some knowledge of what to expect in a serious event but also to show that Goodpastures is survivable, even in a case like mine; second, it would do no harm for physicians treating Goodpastures Syndrome or other devastating diseases, not to mention GP’s prescribing medication to patients, to read this as there are lessons here for some of them; lastly I am trying to exorcise the psychological after-effects of my experience with Goodpastures Syndrome).

In the afternoon of 3 July, due to my deteriorating condition, I was transferred to P3 High Care, a ward from which, had I been able to get out of bed and go to the window, commanded a view of the north end of the city and the bay. Here I was wired up to a cardiac monitor and, since I was now nil-per-mouth, to feeding pumps connected to the normal catheter in my forearm via a device rather resembling a Rube’s Cube into which several different tubes were plugged. In addition to the wound drain and the nasal gastric drain, all these extra tubes and wires made me feel like something awaiting Dr Frankenstein.

When there was a patient in the bed opposite mine I could obviously see the screen of his cardiac monitor. Usually there would be a gentle rhythm but if the patient underwent visible stress then the line on the monitor would become jagged and oscillate somewhat more. The nursing staff here kept telling me to relax and think calm thoughts which puzzled me – after all, I was by now completely bedridden so how much more could I relax than lie in bed not moving? Then one day, by coincidence, I saw in the blank monitor opposite a reflection of mine; a great jagged line was oscillating from the top to the bottom of the screen in what appeared to be a violent fashion. So did I learn that hypertension is another side effect of Goodpasture’s Syndrome.

Despite my surviving the operation so well, my condition had continued to deteriorate. I had not had another plasma pharesis since the first one and I have no idea what drugs I was on but X rays were still taken at frequent intervals and what had, at first, been a small white patch indicating fluid in the bottom of each lung had slowly but steadily become bigger and bigger.

Dr Guillum-Scott visited me a few times to check on the wound, usually contriving to arrive shortly after the nurses had replaced the dressing for the day. To inspect his handiwork he would then rip off the dressing. On the one occasion he palpated the area around the wound whereupon it squirted a stream of dead blood over his spotless white trousers (he was a very snappy dresser). Hopefully he was not on his way to a game of bowls. The staff would then have to dress the wound again which must have taken several hundred Rands worth of materials.

My exhaustion and growing weakness had by now rendered me incapable of movement apart from turning my head from side to side and moving my arms. I could no longer even draw my knees up. Up to that point I had been able to assist the nursing staff in changing the bed linen by rolling onto my side. I could no longer do this and, with my fluid-swollen body, it would take two or more nurses to roll me onto my side whereupon they had to immediately clap an oxygen mask over my face as I would otherwise begin to asphyxiate.

Dialysis had nevertheless continued regularly. The Renal Unit was oversubscribed with patients, I being the only one at the time resident in the hospital, and the unit had to fit me in as and when it could, sometimes in their lunch times and once or twice on voluntary overtime in the evening or during the week-end. The one such evening I was in a particularly poor state, being semi comatose and as my bed was being wheeled back (out of the Renal Unit to the lifts, down to the ground floor, across to Pyott block, up the lifts and down the corridor to P3) I thought I heard heavenly music. Being a non-believer, this seemed quite interesting and I was beginning to speculate that possibly I had been wrong in my non-belief when it finally dawned on my poisoned mind that the Salvation Army band was playing in the courtyard!

5 July, “General condition fair only; patient appears very tired.”

The following day, 6 July, Dr Krige told me that my medical aid had run out and that, as a consequence, he would be pulling out of my case but that I would be treated from this point on as a hospital patient. This meant that I would be required to pay for my “accommodation” but the hospital would pay for all the other costs.

That day I had a fit during dialysis when my blood pressure suddenly dropped to 70/40.

10:00, “Patient very quiet and somewhat depressed.” Up to about this time I had several times comforted myself with the thought that things were now so bad that they could only get better. On the contrary, each time they had got a lot worse. I had never in my life imagined that it was possible to feel SO ill. I was, in effect, starting to come to terms with the idea that I was not going to survive.



P3 High Care at the Provincial Hospital             copyright 2011 Richard Binstead Goodpasture's Syndrome

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