Goodpastures Syndrome

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

13. Goodpasture's Syndrome - asphyxia, the crisis

(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).

Over the next few days comments about shortness of breath become more common. The X rays showed the fluid in the lungs steadily gaining ground. A question may arise here: could the lungs not have been drained? Answer: yes but, being a bleeder, they would then have filled up with blood which would have been worse.

About this time two more things happened. First a doctor whom I did not know came into P3 and told me to try using the oxygen mask all the time rather than just when being moved. Second, one day while I was undergoing dialysis, I looked towards the far end of the Unit and saw Dr van Tonder* and Sister de Kock talking. From the way they both cast quick glances in my direction I gained the impression that they were talking about me. The doctor had an air of reluctance about him while the sister appeared to be emphatic, even argumentative. I have absolutely no evidence as to what they were discussing, just a funny feeling that the sister was arguing that, given a chance, I could survive.

From now on, every day the oxygen was turned up a little higher and an oxygen bottle had to accompany me on my trips to the Renal Unit and the X-ray unit. Sometimes they brought a portable X-ray machine to P3, sometimes my bed had to be taken down to them. This last case presented its own form of mild torture. I was nil-per-mouth (for a total of six weeks) and in the waiting area of the Radiography ward there was on the wall a Pieter Bruegel print of “The Village Feast”. I would lie there and stare at all the peasants eating and drinking and try to work out just what they were consuming and what it must taste like.

For those who might wonder, the liquid nourishment fed into your veins by the feeding pumps keeps you alive but does not satisfy your hunger because the stomach remains empty. It is the stomach which tells you that you are hungry.

The High Care wards were usually short-term wards for patients who had undergone surgery but did not require to be in I.C.U. Typically, a patient would be brought in still unconscious, would be groggy the rest of that day but the following day he would be sitting up, eating well and clamouring to go home. He would usually be discharged the following day. There were only a few patients who stayed longer than this. One of these also subjected me to a form of torture. He was a diabetic, placed in the bed directly opposite mine (it was a six bed ward), and drank copious quantities of water. All day long I would hear the chinking of ice in a jug, the sound of water being poured into a glass and the sound of swallowing. This would be followed at regular intervals by an equally generous filling of bottles with urine. The two things which I most wanted to be able to do at that time and could not, he was doing in disgusting extravagance. Whoever he is, I have never forgiven him!

12 July, “Ek kan nie slaap (nie) en voel nog steeds kort asem.” (I can’t sleep and am still short of breath). This day, I had plasma pharesis again after a gap of 12 days. I tend to believe that this was Sister de Kock’s doing and I have to wonder what difference it might have made if there had been no gap in the course of treatment.

A friend and neighbour from Pietermaritzburg, Jan Oosthuizen, took leave from work and drove down to Port Elizabeth with his daughter Michelle and spent a few days, coming in daily to spend some time with me. Subsequently he was to tell me that, in his eyes, I looked “worse than a Biafran kaffir”.

Other inmates of the ward would also receive visits from their families. When they brought children with them, these would be fascinated by all the paraphernalia of the hospital and their eyes would travel slowly around, drinking in all the detail until they arrived at the row of feeding pumps above my bed. Then their eyes would follow the tubes down to my arm and then travel up to my face when they would abruptly go large with shock. While transfixed by my visage, an arm would reach out to find the sleeve of a parent and tug it until the parent also turned round, saw me and likewise went rigid with shock and horror. The thought crossed my mind that I should have a notice reading “Beware of the patient in the corner” or that, at least, the curtains should be drawn round my bed during visiting hours.

Friday 13 July. By now the X-rays were showing two small dark areas at the very top of my lungs, the rest being milky white. The oxygen had been on full for several days but each day my ability to breathe had diminished until this day I found I could only manage tiny sips of air which were barely sufficient to keep me conscious. I lay without moving and concentrated with my whole being on every single little breath, knowing that one cough or breath missed could not be recaptured. This day no-one came to visit me, not even Dr van Tonder*. Afterwards, I realised that I had not been expected to survive the week-end and was being left in peace to die. I had both dialysis and pharesis this day.

Saturday 14 July, 07:10, “Patient became very dyspnoeic and distressed when he was turned to have his linen changed – this happened twice. He was also cyanosal all the time.” The staff did not attempt to change my linen again this week-end.

09:00, “Patient had a long talk with Dr Loots about his condition – seems more peaceful since.” Actually he talked to me rather than us having a conversation. Dr Loots was a young doctor doing his hospital time and understudying Dr van Tonder* in particular. With singular insight he seemed to realise that I preferred the truth to false encouragement and decided to tell me the truth – the first time I had heard it – namely that Goodpasture’s Syndrome had a 90% mortality rate, that diagnosis had come late in my case and that I had all the complications. In other words, without putting it so crudely, he gave me to understand that I had never really had a chance at all.

Strange as it may seem, this did have a calming effect on me; the inevitable I can accept more easily than the thought of hope proffered and then withdrawn. I remain very grateful to Dr Loots for this. I had pharesis again but once again no visitors apart from Dr Loots.

Sunday 15 July. The absolute nadir of my fortunes, spent semi-comatose, almost not breathing at all. Once again, the indefatigable sisters Helen and Gerda from the Blood Transfusion Service trundled their Heath Robinson device over to the hospital and again gave me plasma pharesis, ruining their week-end. Apart from the treatment, no visitors. By this time I was looking upon dialysis and pharesis as a form of entertainment, an outing breaking the monotony of my prolonged and miserable demise.


Jan Oosthuizen of Pietermaritzburg


Goodpasture's Syndrome - asphyxia, the crisis             copyright 2011 Richard Binstead Goodpasture's Syndrome

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