Tell Me I'm Okay

by David Bradford

  As the first years went by and we all came up to speed on AIDS, those meetings increasingly became mutual support sessions. The hospital provided food, beer and wine. After a couple of case presentations we discussed the difficulties we were experiencing in the face of such tragic loss of life. The clinical meetings transformed themselves into debriefing sessions. We community-based doctors could not have carried on without these opportunities for sharing experiences with our colleagues. We were all struggling with the constant pressure of caring for dying men.

  Fairfield hospital provided us with practical backup too. We knew that when we rang and asked for admission of a patient, we would not be given a lengthy cross-examination. We knew that hospital medical officers would not turn us down if the patient needed a ‘social’ rather than a ‘medical’ admission. In those days, depression, other psychological illness, self-harm, and excessive drug or alcohol use were common before effective treatments for HIV became available. Offering the patient a few days’ rest in hospital, or a few days’ respite for lovers and carers, was often the circuit-breaker we needed.

  Fairfield Hospital staff were not content with just learning from doctors about their newly acquired clientele. They made direct overtures to the VAC; gay men briefed staff up-front about their lifestyles and needs. As the necessity arose, the nursing staff freely gave their time to teach VAC volunteers how to care for, and nurse, ill and disabled patients in their own homes. In those early years we were grateful for the contribution made by volunteers working with people living with HIV and AIDS. Volunteers were of all ages and came from every walk of life. Many were gay men and lesbians, but there were a significant percentage of people who had, until that time, no direct connection with the gay community.

  Fairfield Hospital was at the forefront of AIDS medical and nursing care in Melbourne, just as St Vincent’s Hospital filled the same role for Sydney’s HIV/AIDS affected community. Fairfield had only one significant drawback. Unlike St Vincent’s Hospital, Fairfield was not a general hospital. There were no surgical facilities there for example. But, unlike most hospitals, it was a peaceful place. The Fairfield grounds, in which peacocks roamed freely, were spacious and pleasant, sloping down to the Yarra River behind the hospital. Very early in the epidemic, the hospital in collaboration with VAC planted a memorial garden in honour of the people who had died of AIDS. It was a healing place to which hospital visitors and staff could resort when things in the wards became too heavy.

  Fairfield Hospital was the main support for many of my Carlton patients when they required inpatient care. One gay couple, Tom and Dick, whom Michael and I knew very well, were cared for there and they both eventually died in Fairfield Hospital. Their story follows.

  Tom and Dick

  Michael and I met Tom and his partner, Dick, at Gay Day in Melbourne in 1983. Although they were about seven years younger than we were, we became good friends. They were a handsome couple and very popular. We went out together, hosted dinner parties, and went with them on a trip to Sydney one Easter. They often dropped in to our home in Richmond for coffee on weekends where they were always good company. Tom tended to be serious and a little withdrawn, but outspokenly defensive of gay rights, while Dick was more laid-back and a party boy. They were strongly in favour of sexual liberation and their relationship was an open one. Tom was a medical graduate, training to be an immunologist, and came from a conservative medical background. He was very bright academic-ally, and in 1986 obtained a two year term of post-graduate work in immunology in Sydney. So, Tom and Dick moved to Sydney together and we did not see them for some time.

  In late 1987, I had a long phone call from Tom in Sydney, with sad news. They had both been diagnosed with HIV a few months before, and Tom had AIDS. He had become suddenly ill with pneumonia and had been admitted to St Vincent’s Hospital, where they had diagnosed PCP. They did an HIV test, which came back positive. As a consequence Dick had a test as well, which was also positive. Tom told me his T cell count had been quite low (150), but that Dick’s was fairly good at 380.15 Tom said he had now made a full recovery from PCP and that his consultant had managed to start him on AZT, which had only just become available on a very limited basis for people diagnosed with AIDS.

  Paraphrasing former prime minister, Malcolm Fraser, Tom said, ‘I know life wasn’t meant to be easy, David, but the first few weeks on this drug were ridiculous. I had to take a dose every four hours, including during the night, and the nausea was simply terrible. Then, after a few weeks I became anaemic and had to have a blood transfusion.’

  He told me they had now adjusted the dose of AZT. The new regimen was six hourly dosing, so not quite so disruptive. Big doses of an anti-emetic had relieved his nausea and the anaemia had, so far, not recurred. The good news was that his T cell count had come up to a respectable 300. Tom said his Sydney consultant had been in touch with the doctors at Fairfield so he could continue to obtain AZT when he returned in the near future to Melbourne. He wanted to know if they both could become patients of mine at Carlton, as they would need a GP now. Of course I was happy to agree.

  As soon as Tom arrived back in Melbourne, he had to consult me at once, as he was in great discomfort from a severe and extensive attack of perianal herpes simplex infection. Fortunately, the infection responded to treatment with acyclovir, but despite that drug, within six months he developed painful and debilitating herpes zoster (shingles) on the side of his chest and abdomen.16

  I was shocked when I saw him after his two year period in Sydney. He always had a slight build, but had now lost at least twenty kilos in weight; with his sunken cheeks, he looked gaunt and more than ten years older. His T cell count had started dropping again and was now around the 200 mark. Continuing AZT therapy was failing to get it any higher. Fortunately, Dick remained healthy over that period and his T cell count remained stable at about 300.

  Life was certainly not meant to be easy for Tom. He had a better grounding in immunology than I had, and he read widely about HIV/AIDS, so became more knowledgeable than I could ever hope to be. But, whatever he did, he could not regain weight or get his health on an even keel. He was a great fighter though, and was determined not to give in to the disease. In my mind, I can see him still, sitting opposite me in the consulting room, his face strained with concentration and his eyes burning with a fierce resolution. He had immense faith in modern medicine and believed that most things could be treated, providing a correct diagnosis was made. He continually kept me on my toes. He was always coming to see me about some new symptom or sign and telling me what tests he thought should be ordered, so that we did not miss or overlook some lurking infection. By the time of his death he must have been the most laboratory investigated, X-rayed, CT-scanned, endo-scoped patient in Melbourne.

  Tom’s next AIDS-defining condition appeared quickly. He had been on AZT for eighteen months and a gradually declining T cell count (around 110 by now) led Ron Lucas, his doctor at Fairfield, to suggest a switch to the newest available anti-HIV drug, DDI.17 At that stage, DDI was only available on a compassionate access scheme from the manufacturing drug company and was produced initially in powder form. The powder packages were bulky and had to be reconstituted in water and swallowed quickly. This had to be done four times daily. It was a nasty-tasting, nausea-provoking medication that often caused diarrhoea. Sure enough, Tom developed intractable diarrhoea soon after starting the new medication. But tests showed that rather than a reaction to DDI, he had developed a bowel infection due to a micro-organism called cryptosporidium. Cryptosporidiosis (‘crypto’) is not uncommon. In healthy adults it causes nothing worse than an attack of diarrhoea for a couple of days. But, in immune-suppressed individuals, crypto can cause severe unrelenting diarrhoea; no treatments are very effective. Restoring the immune system offers the only hope of recovery. The problem with HIV infection in those days was that we had no known way of restoring immune function. Continuing with the new drug DDI was Tom’s only possible option.

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sp; Tom was undaunted. He checked out possible treatments specific for cryptosporidiosis in the medical literature and came up with two possibilities – an old antibiotic called paromomycin, and an experimental treatment with hyperimmune bovine colostrum. Ron Lucas at Fairfield promised to obtain supplies of both.

  Time was fast running out for Tom, though; the constant watery diarrhoea meant he was in danger of dehydration and his weight continued to drop precipitously. He was now too weak to manage at work and so resigned from his appointment at the teaching hospital. At Ron Lucas’s suggestion, he was admitted to Fairfield Hospital for a period of total parenteral nutrition (TPN)18 with a view to having a percutaneous endoscopic gastrostomy (PEG) performed.19 When supplies were obtained, hyperimmune bovine colostrum treatment could also be administered via the PEG.

  Tom went along with every medical suggestion, no matter how uncomfortable or invasive the treatment. Tom was adamant that he wanted everything possible done to maintain his life.

  Tom was shipped to the Alfred Hospital for a day for the PEG to be established by a surgeon, then returned to Fairfield. The combination of TPN, paromomycin, bovine colostrum, continuing DDI, and good medical and nursing care at Fairfield brought some relief from the intractable diarrhoea, and Tom started to look better. After two weeks in hospital he was discharged home, where Dick was waiting to look after him. By this time, Dick’s immune function was declining too, but fortunately he remained well. He decided to retire from teaching at a private school on the grounds of his own medical condition, but really so that he could care for Tom full-time. Michael and I visited regularly and did what little we could to help. Although a shadow of his former self, Tom maintained a lively interest in the medical and immunological literature on HIV/AIDS.

  About a month after his discharge from hospital I had a call from Dick early on a Saturday morning, asking ‘could I come visit?’ Tom had been ill overnight with headache, high fever and drenching night sweats. When I arrived Tom was a little confused, quite dehydrated, and running a temperature of forty degrees Celsius. He had some neck stiffness, so I suspected he might have meningitis, but he also complained of upper abdominal tenderness. I rang Fairfield to let them know we were on the way and bundled Tom into my car. He was soon installed in Ward 4 and the hospital doctors were moving in with a battery of diagnostic tests, including a lumbar puncture.

  Tom remained very unwell over the weekend, but when I visited on Monday after my evening surgery, he was sitting up in bed, his eyes burning as piercingly as ever. As he lay back, propped up on pillows, there was the same grim determination in the set of his jaw and the way he held his shoulders. The doctors were treating him with a cocktail of high-dose intravenous antibiotics while awaiting the results of his various blood tests and cerebrospinal fluid exam-inations. The fever had abated, the headache had gone, but his upper abdominal discomfort continued. Tom told me he was off to the Alfred Hospital next morning for an abdominal CT scan.

  My next visit was on the following Friday after a morning outpatient clinic and a lecture to medical students. Outside the door of Tom’s room, I ran into one of the young consultants, who was specialising in paediatric infectious diseases.

  ‘How is he, Richard?’

  ‘As determined as ever,’ Richard replied, ‘but the news is bad. We grew listeria from his CSF, and from a blood culture. Although he seems to have responded to antibiotics, the CT shows multiple liver abscesses. That explains the upper abdominal discomfort he’s been having. Almost certainly the listerial infection is the cause of the liver abscesses.’

  ‘How unlucky is that – not only cryptosporidiosis, but listeriosis as well. I expect the prognosis once you have listerial liver abscesses is pretty poor?’

  ‘It’s terrible. A single listerial liver abscess seems amenable to a combination of surgical drainage and high-dose antibiotic treatment, but in the literature, multiple abscesses are almost always fatal.’

  ‘Poor Tom. Does he know?’

  ‘Of course! He’s a doctor; he’s insisted on knowing every last detail. And what’s more, he’s emphatic he wants to fight on. I rather wish he wouldn’t and that he’d just let us make him comfortable.’

  ‘I don’t think the easy way is in his nature, Richard.’

  ‘No, you’re right! Some people just have no luck with this disease. HIV renders them like microbiological culture plates just waiting to nurture whatever lousy micro-organism happens along. Tom is one of the unluckiest ones I’ve ever looked after. I’m so sorry, David; I know he’s a good friend of yours.’

  When I went into the room to see Tom, he looked even more wasted than he had the weekend before. He greeted me as warmly as ever.

  ‘You’ve heard the news I guess? Listeria monocytogenes infection! No-one can say I get common things, can they?’

  He gave a ghost of a smile. ‘It’s one bug I don’t know much about, but Dad’s been in this morning and he brought me all the most recent articles he could find.’ He indicated a pile of photocopied medical articles on his bedside table. ‘I’ve got an afternoon of fun reading ahead of me!’

  ‘How are you actually feeling, Tom?’ I asked, a bit warily.

  ‘Oh, pretty lousy – my guts ache and cramp a lot and I’m nauseated most of the time; my head aches, and the diarrhoea’s back about every second hour, but fortunately they’re still dripping good stuff into my PEG.’

  He pointed to the bag of milky fluid hanging on a pole beside the bed, with a thick plastic tube coming from it disappearing under his blankets at stomach level.

  ‘I reckon the antibiotics are going in at such high concentrations, they’ve got to slowly shrink those abscesses in my liver.’

  ‘Anything special I can do for you now?’

  He paused for a while and then gave me a steady look. ‘Just take care of Dick for me, will you? He’s not coping with this illness of mine too well. He’s a bit of a mess, to be honest.’

  It was the last I saw of Tom. His condition deteriorated markedly over the next twenty-four hours. Mercifully, he lost consciousness from then on. He died peacefully several days later with Dick at his side.

  Dick came to talk with me in the surgery a week or two after Tom’s funeral. The once fun-loving boy was uncharacteristically serious. ‘David, I don’t want a long drawn-out fight like Tom put up.

  When my time comes, as it must, I don’t want all those medical investigations and interventions. I just want to quietly slip away.’

  ‘I know what you mean, Dick, and I’ll respect your wishes as far as I can. Just sometimes there’s a purpose in some medical investigations; for example: to diagnose something that’s easily treatable.’

  ‘I guess so, but I want to avoid anything too invasive. I don’t have Tom’s stamina, and I don’t like pain and discomfort much.’

  Dick’s T cell count was then around the 200 mark; he was entering the danger period for serious opportunistic infections.

  ‘How about starting AZT now, Dick? It might buy you some months or even a few years.’

  ‘I don’t want that stuff, David. I saw what it did to Tom, and DDI was even worse – he used to gag for about an hour after swallowing that horrible liquid. I’ll just take my chances.’

  ‘Well, it’s your decision; but please take Bactrim every day. We know it will at least prevent you getting PCP and probably toxo-plasmosis as well, and mostly it’s well tolerated.’

  Dick agreed to take a script for Bactrim. We saw him several times socially over the next few months, but he did not return to the surgery. He had obviously decided he didn’t want to know what was happening with his T cells. The next we knew, we had a postcard from him in Hawaii. On his return he again came to see me in the surgery and agreed to have another blood test. He said he feared his T cell count would be bad because he got so tired in Hawaii – everything was a major effort.

  But, with a return of his old style, he grinned and winked at me. ‘I had such a lovely time there, David. I met this hot all-
American boy, only twenty-seven, and lucky for me he was also positive. He moved into the hotel with me and we had the best sex I can remember for a long while. He wanted to come back to Australia with me, but obviously it was out of the question.’

  He gave his old, happy laugh as he spoke, ‘That old virus hasn’t taken away my sex drive anyway.’

  ‘Knowing you, Dick, that’ll be the last to go – you’ll probably have an erection in your coffin.’

  ‘Hope so, Dr Dave,’ he said, digging me in the ribs.

  Dick had just six months more to live. His immune function quickly packed up and he developed Kaposi’s sarcoma (KS) spots on his skin; then he had intermittent bleeding from his bowel and a colonoscopy showed KS lesions in his large bowel and rectum. He declined all but the most essential treatment – a hospital admission for a blood transfusion and some local treatment via a colonoscopy for the biggest, most obviously bleeding KS lesions. He resolutely refused AZT or DDI. He lost weight rapidly and became very frail and weak. Two weeks before his death, he put in a brief appearance at Michael’s fortieth birthday party. A week later he called me to visit at home because he was too weak to get out of bed. I arranged his admission to Fairfield and in a day or two he slipped off the surly bonds of earth in the same ward where Tom had died a year before.

  I was asked to speak at his memorial service in a funeral chapel attended by his family, Tom’s family, and a very large crowd of gay men; Dick had been much loved and was very popular to the end. In my speech, I remember mis-quoting the lamentation of David, the psalmist of Israel, on the death of Saul and Jonathan in battle. ‘Tom and Dick were lovely and pleasant in their lives, and in their death they were not divided: they were swifter than eagles, they were stronger than lions.’