GOODPASTURES SYNDROME A PERSONAL ENCOUNTER

Goodpastures Syndrome

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


1. Goodpastures Syndrome, 28 June 1990, Provincial Hospital, Port Elizabeth, South Africa

(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).

It was dark and quiet in the hospital although some light from the corridor came in through the door of my single-bed ward which was ajar. I had no idea what the time was and could not have read my watch even had I had it on as the pain was so great that I could not in any case focus my eyes.

Then I heard the footsteps of a number of people coming down the corridor and instinctively knew that I was their destination.

Suddenly the door opened fully, the light was switched on and a tall man I had never seen before entered, accompanied by two of the ward sisters. “I’m Doctor Guillum-Scott” he said, “we’ve got to take your kidney out as soon as possible. Please sign the consent form.” A sister presented me with a form and a pen. I scribbled my mark, which was the best I could do, and Doctor Scott departed. I learned very indirectly a couple of years later that my physician, having about 3 a.m. decided that the kidney would have to come out, had phoned around several surgeons who, after hearing I had Goodpastures Syndrome, all declined to waste their time until finally Dr Guillum-Scott agreed to have a try.

Other nurses appeared and began to prepare me. A preliminary anaesthetic was injected, my right upper thorax just below the rib cage was washed and painted with what might have been iodine and some sort of green gown was wrestled onto me. Shortly after, two hospital porters appeared and helped the nurses heave my body onto a trolley and then I was rolled off down corridors, in and out of a lift and along further corridors. Having never been in the hospital prior to falling ill, I did not know where we were and to this day do not know where the operating theatres are.

Upon being diagnosed terminal with Goodpastures Syndrome they had transferred me to the single ward so as not to upset other patients with my miserable demise. I had been in desperate trouble the previous evening and was aware that due to the disease I was now a bleeder. There appeared to be no prospect of surviving a nephrectomy on top of everything else and it seemed that my life could now be counted in minutes.

Oddly enough, I had but one regret. As the trolley was wheeled through the deserted corridors we passed many windows but as it was night all I saw was darkness. I felt cheated that this could not have happened a few hours later so that I might have seen the sky and trees one last time.

Suddenly we were through a pair of double doors and the operating table was before me, great lights above and various equipment and trays of instruments to one side. About five gowned and masked figures awaited. Dr Scott’s mask was around his throat and he greeted me with a frightful and frightening grimace. I asked him about this many months later and he told me he always tried to smile at his patients to allay their fears but my case was so hopeless it was not easy for him. It was somewhat more difficult for me. They manhandled me onto the operating table and, I think, rolled me onto my left side, opening a flap in the gown to expose the painted area. The anaesthetist then muttered something (Good-Bye, perhaps?), put a mask over my mouth and I gave up consciousness without further thought, never expecting to awaken.

 

Richard Binstead, a year after surviving Goodpastures Syndrome

 

Goodpastures Syndrome a personal encounter             copyright 2011 Richard Binstead Goodpastures Syndrome

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