Goodpastures Syndrome

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

15. Progress in my recovery from 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).

After the operation, a couple of stitches had been deliberately kept open. There is a term for this which I have forgotten. The purpose of this was to irrigate the wound. The drain had been removed when the blood stopped flowing after it coagulated. I was taken downstairs to Radiology and given an ultrasound where the dimensions of the haematoma in my abdomen were established. Now the dead blood had to be removed somehow. An enormous syringe, like something out of the circus, was used to squirt water into the wound and then the nurse would knead the area just like dough to try and liquify as much dead blood as possible and then the wound would be squeezed to try and expel the resulting mess to the accompaniment of disgusting squishing and sucking noises. This revolting procedure was to continue even after I had left hospital.

At one point the wound became infected with a variety of bacteria and I was put on a cocktail of antibiotics which managed to contain the infection. On another occasion I was told that I had something or other of which I had never before heard and of which I have forgotten the name. On asking what it was, I was told it was yeast in the bloodstream. My ignorance of this remains total.

On 10 August I was transferred up one floor to a general ward in M7. From here I was taken daily to the Physiotherapy ward in another part of the hospital altogether where valiant attempts were made to restore flexibility and strength to my limbs.

The one patient arrived in this ward, of whose illness or injury I am ignorant, and was importunate and demanding to a degree that was very irritating indeed to myself and everyone else in the ward. While there was a nurse present he would be quiet and well-behaved but the moment the nurse left the ward he would begin shouting “Nurse, Nurse, Nurse..” until a nurse came and fussed over him. Then as soon as she left, he would start again. The whole ward would then shout at him to shut up until it sounded like a riot. Mercifully, he was moved later the same day – to the mortuary I hope.

Late in August I was moved, for the last time, to a small two bed ward at the end of the corridor of M7. This was very nice as it had windows in two walls, the one looking across at P block but the other affording some view of trees, streets and shops – real life! Here my spirits began to pick up a bit faster.

A strange thing in connection with my diet at this time was the question of Potassium. An excess of Sodium (table salt) will drive one mad but an excess of Potassium will cause cardiac arrest and is as a result very dangerous. Potassium is found in many foods such as tomatoes, citrus fruit and green vegetables and, in the case of a normal healthy person, is beneficial as it is good for the immune system. The body will take what it needs and dispose of the rest. In the case of renal impairment, however, the body is unable to get rid of the excess and a build-up occurs. I was therefore on a low potassium diet.

Nevertheless, every “low potassium” breakfast included a whole grapefruit which is a potassium bomb and of which I am mortally fond. This “special” diet had to be prepared separately from the main meals and was kept apart from the bulk meals which were in warmers. This meant that by the time it had reached the 7th floor and all the other wards had been fed my forlorn meal was stone cold and hard. There was also some kind of special bread which came in individually wrapped slices and which tasted as dry as dust.

I found this combination almost inedible (apart from the grapefruit) and asked Dr van Tonder* if I could not be put onto the normal diet and control my own potassium intake by eating sparingly of the high potassium items. He agreed to this and for me meals improved vastly from this time on. Strangely enough, although on a normal diet, I never again saw a grapefruit in hospital.

Much of the time I was on my own which suited me greatly but sometimes there would be another patient in the other bed. The one patient was Freddie Johnson*, who worked in the parts division of a motor dealer. He was a very easy person to get on with, had a curvature of the spine and serious asthma. When he was not having an attack I was almost jealous of his being able to get out of bed, walk around, sit down in the chair and get up. When he was sitting on the edge of his bed wheezing dreadfully and struggling to breathe I agonised for him.

A couple of days later he had been walking around the room when he suddenly lay down across his bed, as if he was ever so tired, and said “Richard, please ring the bell”. Now although it was a two bed ward, there was only one bell and it was over his bed – I presume the ward had originally been a single room. I realised he would not be asking me unless it was really serious so I struggled off my bed and across to his and rang the bell several times. When I did not immediately hear footsteps I made my way in the walking frame as fast as I could to the door and shouted for help whereupon several of the staff came running.

They drew the curtains around his bed and started to work on him. His doctor was informed from the ward office and from what I could gather it would seem that several times he was slipping away and each time they managed to bring him back. But after a number of these recurrences a message was relayed from the doctor to the effect that Freddie*’s condition was now irretrievable and that to continue to try was merely to prolong the suffering. I thought then, and still do, that this was a merciful and humane decision. A while later, when everything was quiet I looked in through the curtains and saw that they had laid him out very neatly, with an open bible on his chest and a flower lying across it. I had not realised that they did things like that.

My progress continued slowly but surely with nothing of note in my file except on 17 September when it was recorded that I climbed the steps in physiotherapy. My walks were becoming longer each day but I was now aching badly in both arms and legs from the effort involved.

Finally, on 1 October, Dr van Tonder* told me I could go home. I had no idea how I was going to contact anyone to take me home but, by sheer good luck, my one neighbour Greg Poisat the plumber, who was doing an annual camp with the Air Force, dropped in to visit me and gave me a lift.

I had been weighed that morning at 50 kg which compared with my normal 75 kg. My metabolism was still catabolic and I was still losing weight so, before I left, the hospital’s dietician came to brief me and told me that I should eat fat and sugar only until my weight started to increase and then begin to add other types of food. She explained that the theory behind this is that fats and sugars are the most easily absorbed into the system and are therefore best suited to “tempt” the metabolism to feed off the food eaten rather than what little protein the body has to offer. The way I have expressed it is surely a very unscientific explanation but was ideal for getting it straight in my mind.



Progress in my recovery from Goodpasture's Syndrome             copyright 2011 Richard Binstead Goodpasture's Syndrome

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