Tag Archives: CMV

A 40 Year Journey Into (And Out Of) Fear Part 5

June 15, 2025Article, Autobiography, Gay Interest, Health Information, History, HIV/AIDSAIDS, CMV, Cytomegloviris retinitis, HAART, HIV, HIV/AIDS, Lazarus syndrome, Prince Henry Hospital, Prince of Wales hospitaltimalderman

The period of the Great Denial was about to begin.

I have copies of many of my medical records from around 1994 through to 1999. Included are correspondence between my GP and specialists, information on trials, pathology, viral loads, hospital discharges, along with my own notes giving a chronology to all that was going on. I haven’t actually looked through them for many years. Perusing them now is a very scary process. How I ever survived all this I do not know! There are some frightening prognosis, and the word “enigmatic” appears more than once as my medicos tried to work out just what the hell was going on with many of my symptoms, and test results. If I was religious, I’d say it was a miracle! But I’m not religious! This was pure stubbornness, nothing else!

Ever since having pneumonia, I’d had ongoing problems with anaemia, and though possibly just because I was HIV+, it was later acknowledged by Professor Dwyer, from POW hospital, that there was a distinct possibility it was caused by AZT. I do remember how tired it made me feel. Everything was an effort! I used to walk from Darlinghurst to the then Redfern Mall in Surry Hills to do my groceries…Clancy’s in Darlo were scandalously overpriced…and it was a slow, exhausting walk.

Everything started to decline. For most of the two years between 1994 and 1996, I was put on, and taken off AZT. My CD4 counts dropped to 160, and continued on a slow downhill slide from there. My weight started dropping! In one letter from a specialist to Marilyn McMurchie, it was stated that my weight was 52kg! Considering that for many more recent years my weight was stable at 68kg, and that I now try to maintain it at between 74kg and 76kg, find it hard to visualise myself at 52kg! During my recovery years of late 1996/1997, drinking mates at The Oxford informed me, scarily, that despite wearing baggy clothes to try to disguise it, they could tell I was rapidly losing weight, and speculated on when I would just…disappear, like so many others!

Yet despite all the signs of a rapid decline towards the inevitable end, I went into full denial, and carried on as if nothing was happening. By 1995, the Stronghold Bar had closed, though I continued to DJ at the Oxford Hotel, and for the Dolphin Motor Club at the Midnight Shift. A couple of close friends died which utterly shattered me. Stuart and Don, both whom I did my gutter drag stints with, both passed…Don from stomach cancer, Stuart from AIDS. With them gone, all the wind went out of my sails, and I threw a large party at my apartment…still shared with Tony…and sold off all my costumes and drag. An era had come to an end! The other thing that ended around this time…though in some ways substituted by copious amounts of alcohol…was my sex life. Always pretty healthy up until this time, I just lost interest, and, I gues with my weight dropping at the rate it was, I just didn’t want to be seen stripped down naked!

In early 1996, Tony and I decided to move from The Dorchester in Darlinghurst, to an apartment in Penkivil St in Bondi. It was here that things took a turn for the worst. Initially, I started complaining to Tony about how dark the apartment was…it wasn’t! Then stepping out of the shower one day, I caught sight of myself in the mirror. Who was that person, that emaciated skeleton in the bathroom with me! It was a horror show! Skin stretched over bone! I often went to the French patisserie on the other side of Bondi Rd from the end of our street. Just crossing Bondi Rd was an effort. A couple of years later, I ran into the woman who used to serve me there. She told me she would watch me crossing the road, always fearing I would collapse midway, I was so thin and frail looking. She was astounded that I had survived that period (all that I said was that I had a viral infection on my brain…not quite the truth, not quite a lie…I didn’t go into detail!).

In early June 1996, I collapsed on the footpath outside my apartment building. I could hardly breathe, and had this heavy weight in the centre of my chest. My immediate thought was that a heart attack was going to spirit me away before AIDS got me! It could be a blessing! With no one around to help, I got myself into my apartment, and rang Tony to get me to St Vincent’s. It was a collapsed left lung! Thankfully neither the cardiac problems, or PCP I was suspecting.

I was in St Vincent’s Ward 17 South (the AIDS ward) for 2 weeks. Despite my vision greying out, I kept insisting that I just needed new lenses in my glasses. I saw Dr David Cooper, but although questioned regularly about my eyes, I insisted they were fine! Talk about denial! It is a period of stupidity I’ve never forgiven myself for! To my thinking, having gotten though 13 years of HIV relatively unscathed, it could not possibly get me now! My care at St Vinnie’s could not have been better, despite a massive cut to hospital funding that occurred at this time. Our HIV nurses were walking miracles. I was still on the Oxfords DJ roster at this time, though I remember the shocked look on Sandy’s face (a manager at the Oxford) when, on visiting someone else there, she realised I was in there as well. It probably looked obvious I wouldn’t be returning to the mix-decks anytime soon!

I was discharged at the end of two weeks. It is at this point where I am about to make a decision that would save my life! Feeling that Marilyn had too soft an approach to HIV, and desiring a more aggressive approach to my health care…I had my rather scary discharge papers sent to Dr Cassy Workman! Perhaps more importantly, despite being told it could take three-plus months to get in to see the tee-shirt wearing, chain-smoking Cassy…a week later her receptionist rang to say she wanted to see me…urgently!

So a few days later, I turned up at her (then) Surry Hills surgery. Her consults were far from normal, something patients were thankful for as the casual setting put them more at ease. It is not even a point of despute that Cassy was one of the most knowledgeable, most radical, most aggressive HIV GPs in Sydney at this time. Those under her care adored her. The very first thing she did when I got in was to check my eyes. She immediately suspected CMV (Cytomeglovirus retinitis). She rang Patrick Versace (a leading Sydney ophthalmologist) and arranged for me to visit him at his Hurstville eye clinic the next day. A friend drove me there the next morning. He confirmed the diagnosis. By the time I got back to Bondi Junction, I received a phone call from Cassy to say I was to get to Prince Henry hospital, at Little Bay, IMMEDIATELY! They were waiting for me!

25th June 1996! So, a very scary bus trip to Prince Henry, without even a stop-over at home. It was coming on nightfall when I got there. As promised, the nurse in triage was waiting for me. It was not a healthy boy who turned up that night. Weighing in at 48kgs, I had chronic anemia, chronic candida, chronic bilateral CMV retinitis, and 10 CD4 cells. They didn’t need to tell me prognosis was not good! I was admitted to Mark’s Pavilion (the AIDS ward) that night, then followed 2 weeks of blurred memories…life went into fast-forward! Hooked up to blood, and saline drips. Hourly blood sugar tests…my finger tips were so sore from the pricks! In my mind, this was my final pit-stop. I remember vividly how reconciled I felt about that. Not scared at all…just very much at peace at such an…inevitability!

But the twist was coming!

The ward on the floor above us in Marks Pavilion was for the HIV/AIDS Tuberculosis guys. My first morning there, I was piled into a mini van with other patients from both floors who required care at Prince of Wales (POW) hospital in Randwick. The eye clinic there was to become a very familiar place over the next couple of years. And so my first experience with the very scary ganciclovir intraocular injections. Trust me on this…no matter how necessary it may be, our eyes just don’t want needles poked into them. And will go to any means to avoid it. Trying to keep your eye still when you know a needle is heading towards it…they have to try every trick in the book. The weird thing is that it doesn’t hurt, it’s just the eyes defensive function. Anyway, we got there, and this had to be done quite a few times a week until the CMV became quiescent. Both my eyes were full of the cloudy formations typical of CMV, though my left eye was more severely affected, with only a small window of vision left in it. The optic nerve was severely affected. I was lucky…it never got into my nervous system…a very scary way to die.

There was one very touching incident that happened. One of the TB boys and myself often attended the same eye clinic. He was a good looking lad, and appearing to have little support from family and friends, I sort of took him under my wing. I consider myself to be a pretty tough guy…I’ve had enough hard strikes in my day to make me so…my friends say they admire my pragmatism. I can’t remember the guys name, but we were sitting together in the waiting room and started discussing our situations, our fears. I put my arm around his shoulder, and it was like a trigger…we both ended up in tears. Such a brief, intimate encounter, and it was the last time I saw him, but I’ve never forgotten it. The lonely guy and the tough guy sharing an instant in time. I hope he survived his TB and eye encounter. I hope his fight coontimued.

Under Immunologist Professor Dwyer I was started on a combination of old and new drugs…AZT, 3tc and the new kid on the block…the protease inhibitor Indinivir! This was the start of what was to become known as HAART (High;y Active Antitetroviral Therapy). Viral load counts were started around the same time…my initial reading in Prince Henry was 500,000! The initial high dosage of Indinivir caused nausea, so dosages were modified. I also had a bone marrow biopsy to explore how much AZT was present there. The very nervous male nurse gave me Pethidine. I was so high…an amazing experience. The biopsy was done at the rear top of my thigh, and his first sample wasn’t sufficient. Upon asking my permission to go in again for a better sample, I was so off my face I told him to do whatever he liked! There was a very nice bruise there after,

I was in Prince Henry for 2 weeks. As I stated earlier, most of it was a blur. I’m sure I had visitors, but don’t ask me who! It was all medical…including 8 trips to POW for the ganciclovir injections. At the end of the two weeks…thanks to the new drug regimes, my CD count was doing a slow rise. Handing me over to the care of clinicians and my GP, was a logical step.

So I was discharged from Prince Henry on the 9th July 1996. I got a cab home. One would think…gee this is a really good outcome! And it should have been! I’d survived AIDS! But it was just the start of an 18 month recovery nightmare.

Thrust back into a world that was not prepared for me…for us! We became the HIV worlds Lazarus syndrome survivors! No one knew what to do with us! We were left flailing in the winds of change!

Tim Alderman ©️2025

Seeing In Time

November 4, 2014Gay Interest, Health Information, HIV/AIDSAIDS, blind, CMV, HIV, hospitals, legal, vision-impairedtimalderman

This article – now edited – was written in 2001. I intended to sue St Vincent’s for causing my loss of sight by not testing me for CMV in 1996. I had been given a list if solicitors by HALC (HIV/AIDS Legal Centre), and had picked one out. It was pro bono, and I had several discussions with him. However, charges such as searches and photocopying etc were my responsibility and when the first bill for $1500 came in, I just had to drop it. 13 years on, the predicted retinal detachment has happened and a lot if other shit besides. I am now contemplating having my left, totally blind eye, removed and replaced with a prosthetic. What happened here was just an introduction!

I have come to realise, perhaps a bit late in life, that you spend far too much time bending in the general direction of things instead of sticking up for yourself and saying no, this is not what I want, or the way I want things to go!

I have decided to sue a local hospital. That I have chosen to do this has come as a tremendous shock to me, though those around me seem to have been waiting for me rectify what has been, for me, a life changing event.

By 1996 I had accepted that sooner or later, AIDS was going to get me. What I hadn’t counted on was that St. Vincent’s hospital was going to assist in my chances of survival! – and in the one ward they had where I always felt I would be safe – Ward 17, the dedicated HIV/AIDS ward.

It was a sudden change in health status that delivered me to the A&E department. I had collapsed outside my apartment building, gasping for breath, clutching my chest, thinking that a heart attack was going to beat AIDS to the crunch, or that PCP had finally caught up to me, as it seemed to do to all in my state. It turned out to be neither – I had a collapsed left lung, though being HIV, they moved me into Ward 17 after inserting a tube to keep the lung inflated. Most of us assume that we go into hospital to be cured of health problems, or at least receive a better standard of medical care to assist you to a slightly higher standard of health than you have when you enter. Well…I have to tell you it doesn’t always happen that way!

I firmly believe that some people go into health care because they truly believe in what they are doing. They truly believe they can make a difference, that they can benefit people who are ill or are disabled. These people are not professors of medicine, do not have a fancy examination room with a prestigious address, and are not heads of departments. The well-heeled medico’s who share these attribute have strings of initials after their names. They do ward rounds with a string of nose-in-the-air arse lickers and sycophants. St Vincent’s at this time had more than its fair share of the latter, and unfortunately, some of them were in HIV medicine!

Now, I don’t want to give the impression that I was just in hospital with a collapsed lung – it was more complicated than that. I was in the midst of changing doctors, so didn’t actually have a GP when I was admitted to Ward 17. My scripts for AZT had just run out, I had chronic anaemia, chronic Candida, and weighed in at about 50-something kilos. In other words, I was a very sick boy. Now, under normal circumstances, with a CD4 count of about 10, they would test and examine you for ALL AIDS related illnesses – PCP, CMV, MAC, neurological and psychological problems. For some unknown reason. Sure, they treated – and eventually repaired – the collapsed lung. They tested me for PCP – negative result – and gave me a blood transfusion, but that was it. No eye examination, no dietician, no occupational therapist – no, that’s a lie, I did have one session with an OT, and though she promised other sessions – she never quite madeit back.

So I lay there for 10 days, drifting in and out of sleep, as you tend to do when you are in this bad a condition, suffering in silence the daily ward rounds with a
professor who seemed more interested in prestige than care, with his little band of sycophants, who seemed to assume that this was what was expected of theM. No one seemed to particularly care, so I was thankful for friends, for without them I think I would have gone mad.

Death seemed pre-ordained at this time I felt I had outlived everyone else anyway, and that my time was drawing to a close. I had predicted 2 years when I quit work to go on the pension in 1993, and had managed 3, so in many respects I felt I had survived beyond expectation, and short of a miracle, I was going through the final stage of my life. I was, to all intended purposes, fulfilling expectation.

So, with a repaired lung, a couple of pints of fresh blood, and some Candida medication, I was discharged 10 days later. No HIV medications, no doctor. I had my discharge papers sent to a local HIV GP, who I didn’t know from a bar of soap, hoping that she would feel sorry for me, and rush me through the waiting list. Thankfully, she did just that!

Two days out of hospital, and her receptionist rang to say my discharge papers had arrived, and that even though they didn’y know who I was, the doctor wanted to see me. I would like to think, in hindsight, that this was almost like some sort of sign, as having my hospital discharge sent to her was an act of providence that probably saved my life.
As soon as I mentioned to her that my vision had been ‘greying over’ for a couple of weeks, she was immediately on the phone to the Prince of Wale’s Hospital Eye Clinic at Randwick. They promised that somebody would stay back at the end of clinic until I arrived to have my eyes checked. They thought at that stage that I had CMV retinitis, but could not be certain enough to confirm the diagnosis. I had to travel to Hurstville the next day to see a leading ophthalmologist, an expert in CMV. He confirmed the diagnosis, and by the time I arrived home that afternoon, their was a message to ring the doctor. She wanted me admitted to Prince Henry Hospital straight away.

Prince Henry added other health items to the list St Vincent’s had. On top of chronic anaemia and Candida, and my 10 CD4 cells, they added chronic bilateral CMV retinitis, and Wasting Syndrome. Pandemonium was about to strike, but at least this time I felt as though people cared. Prince Henry was much more grounded in reality than St Vincent’s, and whatever my prognosis may have been – mortality was never discussed – they went out of their way to help me. Sure, I had a drip in both arms, was being transported to Prince of Wales twice a week for intraocular injections of ganciclovir, and I was a bit of a guinea pig because of my condition – medical students must love people like me, as we become a living text book – but they did care. I had a dietician who planned meals and snacks for me, and nurses on hand to help me during my night sweats. I even had a reporter from Japan interview and photograph me, as he was doing a piece to be published in Japan. After seeing me, he was concerned that the Japanses ‘head-in-the-sand’ attitude to HIV/AIDS was something to be seriously concerned about.

To be honest, the two weeks in Prince Henry gave me a different perspective on many aspects of life. There was the guy in the room next to mine – I had a huge room to myself in Marks Pavilion, and the windows looked out over Beauty Bay – who had terminal cancer. Not once, despite whatever he may have been going through, did I hear him complain or whinge about his lot. He virtually lived in the hospital, and even had his own stereo moved in with him. And the young guy who was at the opposite end of the ward to me. He also had CMV, but fuck, he was so young, so innocent! We sat together in the eye clinic one day, and he grasp[ed my hand, cuddled up to me, and cried. I wanted to give him some hope, but I would have felt like such a hypocrite. I didn’t know if their was hope for me at that stage, let alone try to give it to someone else who I knew was worse off than I was.

Well, they saved my sight – sort of! The injections, and eventually $10,000 worth of ‘Vitrasert’ ganciclovir implants managed to save the sight in my left eye. As for my right eye, the optic nerve was damaged by the CMV, and despite efforts on everyones part, I lost 80% of the vision in it, and the impact on my life has been…disconcerting. I have regular checks every few months now, and I have to be careful not to bump my head hard on anything. The scar tissue in the left eye is so dense that they are concerned now about me ending up with a detached retina. I’ve also had two operations to remove cataracts caused by the implants. They originally estimated a 4% chance of cataracts from the implants, but 12 months later this prediction was upgraded to a 100% chance. Some odds you can’t beat.

But this has been the least of my worries. Sure, my right eye has, in some respects, compensated for the loss of vision in my left, but not entirely. It took me twelve months to adjust, but that twelve months was not without incidents, such as tripping over some tree roots in Crown Street, and landing flat on my face in front of some people coming in the opposite direction. I also tripped and stumbled a great deal as my vision tried to compensate for a change in everything, including perspective. Stairs with contrasting edging strips became ramps – at least from my perspective – and ‘I’m sorry!’ became part of my everyday vocabulary as I bumped and staggered my way around. That is something that even 5 years down the line, I have never quite gotten used to. This would not be the first time I have stated that in some respects, it would have been easier to have ended up completely blind. At least that way, I would have a white cane, or a dog, and people would know I was definitely blind, and not give me condescending looks every time I run into someone. For some unknown reason, it has always ended up my fault. I just accept.

Rules of our household – don’t leave anything sitting low on the floor, or hanging to my left when I don’t know it is there. When walking down the street, keep to my right. If you don’t keep to that side, expect me to keep moving to ensure you are there. Go into the city? Not on my own these days. As much as I love the city, and love to watch it grow, it is a place for people in a rush, not a place for people who are visually impaired. Too many people, too many doorways for them to rush out of, and too many people crushing into confined spaces. I miss it very much, but it is not a place for me anymore. I shop locally, and that is hazardous enough for me. Do anything during the peak hour rush? Not likely these days. I had to meet David at 6.00 at the Entertainment Centre, to attend a couple of concerts. I actually mapped out a way to get there that would have a minimum of people that I would have to avoid. I go to daytime lectures and tutorials at UTS to avoid travelling too and fro during peak hours. I’m also trying to get them to contrast edge-strip the black granite stairs in the Tower Building, so that visually impaired people can see where the stair edges are. That is one fight I may yet win. Oh, and I shouldn’t forget that I kick small children.
David, who is my partner, and I went for a walk down Hall Street, leading to Bondi Beach, for one reason or another – we were probably looking for somewhere to eat breakfast. Sure enough, for a split second, I wasn’t watching where I was going and the next thing I knew, this kid had run straight onto my foot as I took a step forward. He just came out of nowhere, as kids do, and I managed to literally lift him into the air with the forward motion of my step, and launched him off to the side of the footpath. Thankfully, he landed in the grassed area around some trees growing on the footpath. I would hate to think what may have happened if he had landed on the footpath itself. I don’t know who got the biggest fright – the kid, myself, the kid’s father, or David. The father came running as I picked the kid up to make sure he was okay, but the look on the father’s face said it all – It was my fault, and I should have been watching where I was going. Even an explanation that I was
partially blind, and hadn’t seen the kid coming didn’t seem to sit well with him, nor did a multitude of apologies. Now, I dare say the kid probably forgot the incident 10 minutes after it happened, but It is still a nightmare with me. Whenever I think about the state of my eyes, that is the one instant that comes straight to mind. It’s not just the incident with the kid – I’m aware of that. It is that in some way, these sorts of things happen to me everyday, though fortunately with larger adults, not small kids. Despite all my precautions, despite taking my time getting around, despite walking metres up a street to use crossings or lights, despite great care at intersections I feel it is only a matter of time before I either seriously hurt somebody, or they seriously hurt me.

So I’m not just going to sit back and cop it sour anymore. Somewhere along the line, in a hospital, on a particular time on a particular day, somebody, for whatever reason, decided not to do something, and now I’m paying the price. Well, it’s time for someone to pay for their oversight, and the time to pay is NOW! My health is as good as it’s going to get at the moment, and with it being unlikely that I will ever return to full-time work, or to any job that requires me to get stressed, it is time to take action. I’m not going to ignore it anymore, or pretend that it just didn’t happen. It did, and my life has never been the same since.

Personally, I think that they, like Prince Henry, and certainly me, never expected me to live, so just doing a minimum of care in 1996 may have been acceptable practise, especially in an area of medicine that has always been cash strapped. But I didn’t die! I am well and truly alive, and the time for revenge is at hand. I hope that at the end of the day, they will learn several lessons. Never assume anything; never underestimate the strength of the human will, and mind; and never think people are just going to forget about it! We Don’t!