Goodpastures Syndrome

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

7. Diagnosis Goodpastures Syndrome

(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).

On the morning of 19th June one of the nurses told me I was in renal failure. I was unable to grasp the reality of this and so she stuck her forefinger into my thigh. It vanished right up to the knuckle and when she removed her finger, to my horror the indentation remained. Later in the morning a Senior Sister and a Sister came to my bed, introduced themselves to me as being from the Renal Unit and told me that from now on I would be taken to the unit to be dialised whenever necessary. This was my first encounter with the redoubtable Sister Marie de Kock.

At 12:45 the same day Dr L van der Walt surgically inserted a sub-clavian catheter. I was never to see what this looked like, being by now bedridden and unable approach a mirror. Apparently this is a catheter directly into the sub-clavian artery which is one of the two great arteries coming out of the top of the heart. It had some sort of valve on it to which could be clipped the connection of the dialysis or pharesis machines.

The Port Elizabeth Provincial Hospital, admin offices with Malan Block behindThat afternoon I was taken to the Renal Unit at M2 to be dialysed for the first time. The modern part of the hospital consists of two blocks, Malan and Pyott, hence M2 is on the 2nd floor of Malan.

I now acquired a second physician, Dr van Tonder*, a renal specialist. It was shortly after this that Dr Krige came and sat on my bed which, had I been in full possession of my faculties, would have set my alarm bells ringing. He told me that he and Dr van Tonder* thought that I had Goodpastures Syndrome. It was obvious that that meant nothing to me so he explained that Goodpastures Syndrome was an auto-immune disease where, for reasons unknown, the immune system malfunctions and starts producing antibodies without there being anything alien in the body for them to attack so they attack the body itself, particularly the lungs, kidneys and vascular system. This is as best as I can recall. He also said the disease was controllable using certain drugs and techniques which were to be begun immediately.

By this stage I was seriously appalled; I was now being kept alive by machines. Dr Krige pointed out to me that not so many years ago I would already have been dead of renal failure. I did not, however, seem to improve; my file having comments such as “Pasiënt se toestand bly onbevredigend” (patient’s condition remains unsatisfactory) and “Patient’s condition is deteriorating”.

For some reason or other I believed that my kidneys were not totally without life even though I was producing no measurable quantity of urine. When I mentioned this to Dr van Tonder* he told me that I should resign myself to the fact that my kidneys were dead and would never work again. I was later told by Sister de Kock that there were three options for someone with no kidneys: perpetual dialysis, bag or transplant and that I had been placed on the transplant list. I was also told that my physicians were liaising with Professor van Zyl Smit at Grootte Schuur Hospital in Cape Town and another, whose name I forget, in Johannesburg Hospital and that these were the country’s top two experts in auto-immune diseases such as Goodpastures Syndrome. This, at least, seemed encouraging.



Diagnosis Goodpastures Syndrome             copyright 2011 Richard Binstead diagnosis Goodpastures Syndrome

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