Goodpastures Syndrome

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

14. The turning point in my Goodpasture's 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 Monday 16 July, I found that the sips of air I could manage were slightly bigger than Sunday’s. By the very narrowest of margins I had turned the corner for I do believe that another day of further reduced air would have precipitated respiratory arrest quickly followed by cardiac arrest. Dr van Tonder* came to visit me that morning and, if he was surprised to find me still alive if not kicking, then he hid it well.

Day by day my breathing became easier. Progress in this respect was actually very slow and gradual but the effect of getting more air after asphyxia was exhilarating and made me feel that I was improving by leaps and bounds. On the afternoon of 18 August, to everyone’s surprise including my own, I passed 125ml of urine. During that evening’s visit, Dr van Tonder*, upon learning of this piece of good news, immediately authorised with effect from the following day a 40g protein sloppy diet. I literally cried for joy.

The 19 August was to prove a bitter disappointment and the start of another and quite different sort of struggle. My opinion is that a lot of nonsense is talked about hospital food. Of course one can not expect home cooking when such a large number of people have to be fed and the food distributed over many floors of many buildings. The reason many people do not like it is that so many of them are ill, which affects their appetite and their ability to taste.

My problem, however, proved to be quite different. When the food was placed in front of me, even though it was a sloppy diet, i.e. everything mashed, it was the most wonderful meal I had ever seen. In a state of near bliss I put the first spoonful into my mouth and immediately vomitted it out. I never even had the chance to swallow. Not that there was anything wrong with the food but my protracted spell of nil-per-mouth had de-acclimatised my system to foreign matter (food). I failed to keep any of that meal down to my bitter disappointment. On the positive side, I was able to drink the tea which was served in a vessel resembling a teapot with the spout coming out of the side.

One other problem also manifested itself at this time. I had spent so much time on my back without moving that I had developed a localised blood pressure and whenever the staff raised the back of the bed at, for example, meal times, I would faint. I began to wonder if I would have to spend the rest of my life on my back. It was many days before this rectified itself.

The question of the food was more than academic for two reasons. Firstly, the feeding tubes had been disconnected, meaning that I was wholly dependent for survival on what I could eat, and secondly my metabolism had turned catabolic. This condition is where, due to lack of food being put into the body, the body starts using the body’s own resources or, in effect “eating itself”. While my veinous system was slowly soaking up the excess fluid in my body, my real self was becoming less and less.

Over the next few weeks I was gradually able to retain more and more of the food although I was still vomitting frequently. When some harder elements were introduced into the diet, such as boiled potatoes, still another problem manifested itself. My jaws were so weak from disuse that after, chewing a couple of mouthfuls, they became so sore I could not chew any more. Nevertheless, agonisingly slowly, over the course of the next two and a half months, my ability to feed myself and my bowel and bladder functions improved bit by bit.

My metabolism, however, remained catabolic and, as the excess fluid build-up was soaked up, I eventually regained my “normal” proportions whereafter I began to fade away. I was still losing weight daily when I finally left hospital.

It was close to the end of July when, in the Renal Unit, someone held a hand mirror in front of me so that I could see myself for the first time. I was initially puzzled as I could not connect the apparition I saw with myself, so different did I look. All the flesh had gone from under the skin and the lips had shrunk back, exposing yellowed teeth. Two large, frightened eyes stared back at me out of enormous black sockets. I had really not fully appreciated in all this time what I must look like to others.

On 31 July Dr van Tonder* had given the instruction “mobilise” and later that day they brought a walking frame into the ward. Several nurses wrestled me off the bed, told me to brace my knees, and placed me on my feet inside the frame so that I could grip it with my hands. The strain was so great that I could do nothing but stand there and tremble like a leaf in a gale and after no more than a minute they put me back on my bed. This exercise was repeated a number of times during the day by the end of which I was absolutely exhausted but able to stand in the frame supporting myself.

The following day, I essayed movement. I heaved the frame a few inches forward and practically dragged myself after it. By this laborious means I finally made it to the door of the ward. As my bed was the one closest to the door this expedition resulted in a total progress of about 2 yards. This great achievement was nevertheless faithfully recorded in my file. The following day I actually made it through the door into the corridor and from that time on my perambulations slowly grew longer and more frequent as I gradually picked up strength – although the word “strength” barely seems appropriate.



The turning point in my Goodpasture's Syndrome             copyright 2011 Richard Binstead Goodpasture's Syndrome

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