After his kidney failure diagnosis, Richard never went back to Rigg. Instead he went home… except for the three-times-a-week, eight-hour dialysis sessions at the Infirmary.
His diet, already carbohydrate-controlled because of his diabetes, had to incorporate a whole new set of restrictions, with limitations on protein and liquid, and reductions in salt, potassium and phosphates. The hospital dietician gave him booklets specifying a suitable diet, but most of the recommended meal plans consisted of foods he either didn’t much care for or actively disliked. He sent me the lists of restrictions, and I worked out ways to modify dishes he liked to eat, so as to keep him within his mineral and fluid limits, while providing enough of the right kinds of carbohydrate. He was assigned home helps, whose job was to come in daily and cook for him as well as doing the cleaning; it was vital to provide suitable recipes for them to use.
The thrice-weekly haemodialysis was not only onerous but tiring. After a while, the Infirmary offered an alternative therapy: continuous ambulatory peritoneal dialysis or CAPD. In younger patients like himself, Richard was told, this method of dialysis often gave better results than haemodialysis and could help stave off the need for a kidney transplant.
Being set up on CAPD entailed an operation to fit a catheter through Richard’s abdominal wall, with internal tubing in his abdominal cavity. Dialysis fluid was poured in through the catheter, left for a few hours to absorb waste through the walls of the blood-vessels supplying his guts, and then drained out through the same catheter before fresh solution was added. Because of his sight problems, Richard could not manage the dialysis solution changes or the catheter care by himself, so nurses from the District team came in three times a day to help.
Changing dialysis solution is not a quick procedure. It took about 20 minutes to drain the used solution and another ten to infuse a fresh bagful, and it was vital that the whole procedure be carried out with scrupulous attention to hygiene, to keep the catheter and cap sterile. Dialysis fluid contains quite a lot of glucose; any germs that got down the catheter would find themselves in bug heaven – with food, warmth, moisture and every opportunity for multiplying wildly and causing life-threatening illness.
It was not long before Richard’s CAPD treatment began causing him problems. The District Nurses were, almost without exception, kind, efficient and meticulous. However, they were all under time-pressure, and one worried him considerably. “I swear, she’s not cleaning down properly between emptying the used fluid and infusing the new bag”, he told me. “I know I can’t see what she’s doing, but there’s nothing wrong with my ears – or my ability to count time – and I know she’s not doing all the steps that the others do.”
He tried speaking to her about the steps that she was going through, but she took the huff at having her way of working questioned, and a couple of weeks afterwards, the phone call sounded not just worried, but frightened. “That clarty besom was here again, and she’s still bloody furious with me. She’s been downright rude to me today – speaking to me like I’m a naughty child, and I’m absolutely sure she didn’t wash her hands before she got started. She didn’t clean round the catheter thoroughly, either. I think she’s doing it deliberately, to pay me back for calling her out. And she was really rough – she was pulling at the tube. My belly hurts.”
I encouraged him to ask for her to be taken off his team, but it was too late. A few days later, the drained fluid was cloudy and foul, Richard had a high temperature, and he had to be readmitted to hospital, where he was found to be suffering from MRSA peritonitis. Once antibiotics had seen off the infection, the catheter had to be removed, and that was the end of his CAPD.
Up until this point, Richard’s haemodialysis had been carried out via a neck line, but now that he was going to be permanently on haemodialysis, he was told he would need another operation to create an arterio-venous fistula in his arm. The procedure would involve connecting an artery directly to a vein. In the weeks following the operation, the increased blood flow and higher arterial pressure would make the walls of the vein dilate and thicken so that it could be used for repeated, frequent needle insertions without collapsing.
For months, Richard refused the procedure. The prospect of subjecting himself to further anaesthesia scared him. He was now experiencing chest pains and breathlessness that were put down to diabetes-induced cardiovascular problems and he did not want to die on an operating table. Eventually, however, he got to the point where continuing with the neck line was becoming less and less tenable, and he agreed to the fistula surgery.
As usual, he called me the day before he was due for admission. Although he was still worried about the anaesthesia, he was beginning to plan for the extra freedom that the fistula could offer. It would be easier to access dialysis away from home, so he might be able to visit family again – something he had not been able to do for over eighteen months. If he came to visit his sister in London, would I come up to Town to see him, as I had done when he visited before?
We had ourselves a lovely time planning what we might do. His sister lived not far from a particularly beautiful park; if it were good weather – and there was every chance of pleasant weather in August or September – it would be the perfect place to go. Richard had begun experimenting with photography, taking close-ups of natural objects and enlarging the resulting pictures to A3 size so that he could pick out details. He knew from previous visits that the park had some trees with interestingly gnarled bark that would make excellent subjects…
Four days later, I received a call from his stepmother. Richard had, as usual, been admitted to the Infirmary a couple of days in advance of his planned theatre date, so that the hospital could be sure that his diabetes and dialysis were all stabilised prior to surgery. On the day before he was due the operation, his consultant had come to see him on the ward round. Richard had been in fine form, joking with the surgeon, teasing the medical students, and flirting with his nurse. According to her colleagues, the nurse had returned to the central station in a high state of giggle to confide some of Richard’s more outrageous sallies, before setting off again to take him for his dialysis. When she got back to his bed after five minutes away, she had found him still sitting propped against his pillows; but he was dead. She was so shocked that the ward sister had had to send her home for the rest of the day.
Subsequently, the autopsy found that Richard’s heart problems and chest pains had not been due to diabetic vascular disease, but to pericarditis – an inflammation of the membrane that surrounds the heart – which had led to a build-up of fluid around his heart. The pressure of the fluid had finally simply stopped his heart from beating. And the underlying cause of the inflammation was infection by MRSA, the same strain of MRSA as had caused his peritonitis. The pathologist thought it likely that the bug had been lingering ever since the original episode, had somehow crossed the diaphragm and found itself a nice safe hiding-place in Richard’s pericardium.
Instead of having a day out in the park, a two-year-old Eldest and I went to the funeral, on a summer day that blazed as bright as Richard’s hair under a sky no bluer than his eyes. People had come from all over; schoolfriends from Richard’s home area, family from London and the Home Counties, a coachload of friends and ex-colleagues from Scotland. I travelled by train and met up at the station with University friends coming from the other direction.
The curtains did not close around the coffin at the crematorium. As the congregation filed quietly outside, Richard’s father stood with his hands on the polished wood and his head on his hands. The bright blue eyes that Richard had inherited were drenched with tears for his son, while his remaining children hugged each other and wept also.
I did not think about the ‘clarty besom’ at the time, but I have since wondered whether seeing that scene would have caused her any twinges of conscience about her interactions with Richard, or whether she would simply have shrugged. I suspect the shrug to have been more likely, on the basis a person prone to a twinging conscience probably wouldn’t react with anger and vengefulness towards a patient who was frightened and in need of reassurance. And a person who could feel true compassion for a bereaved family would be unlikely to behave vilely towards a vulnerable person, however annoying they might find them.
Who By Fire 