Positive Life NSW

A bout of pneumonia led to Wayne Daubney having six joint replacements. Now his friends call him the 'bionic' man!

I’m a 51 year old gay man who’s been poz for 27 years. My medical story is a little unusual.

Photo by: Morgan Carpenter

Back in 2002, I was in St Vincent’s with pneumonia – your average, garden variety pneumonia. As I was more than a little sick, I spent a lot of time in bed. I’d already ballooned up to the size of a small whale from all the corticosteroid medications.

After about 10 days I developed a DVT (deep vein thrombosis) in one of my legs.  A couple of days later, all hell broke loose. I’ve no memory of it - traumatic amnesia, thankfully.

Panic stations
It was just after Christmas, I remember that much. I was told I got out of bed and 20-30 seconds later had a major seizure. The clot had come loose and hit my lungs. Panic stations all round and they carted me off to intensive care. I’m glad this happened in the daytime while there were people around and not at night as then they may not have got to me in time. A couple of days later I came to in the ICU, wondering why I felt like crap. The next week is a bit of a blur. At one stage I swear I saw the doctors and nurses doing a dance number in the middle of the ICU – but it was the drugs they had me on. At least I didn’t have to eat the crappy food – instead I got it naso-gastrically. When I was able to have a look at myself, I was purple all down the left side of my torso and arm from the blood clotting and I’d ballooned up to the size of a large whale. After about 10 days, they transferred me back to 8 North but not before pulling all these plastic balloons and tubes out of my lungs. Yuck – not a pretty sight.

Next came months of trying to learn to walk again as my leg muscles had atrophied so badly from being bedridden. Slowly I regained my health. I hated not being able to do anything for myself, except sometimes for the showering – the male nurse was hot! (Sick as I was and still thinking of sex. Typical Scorpio.)

After two and a half months, I was transferred to the hospice. At least the food was better and I could go up to the Oxford a couple of afternoons a week - even though I had to have a nurse with me and couldn’t drink more than one beer. A fortnight there and finally home. And that’s the end of that, I thought. Wrong!

More crappy food
A month later, back in again with pneumonia. At first they said it was aspergillosis, then PCP. Another fortnight of crappy food. Back home again but another two months later, in again. More crappy food. By this time I knew the hospital menu by heart. The dietitians are good though, as they make sure I get all sorts of extras that aren’t on the normal menu.

It took quite some time after that to regain my health. The gym helped. But after I’d been going to the gym for awhile, I was having really bad pain in my hip, so my GP referred me to a joint specialist. It turns out that I had developed avascular necrosis (AVN) in my left hip. (Also known as osteo-necrosis.)  The Pain Clinic at first said it was all the prednisone that they pumped into me in the ICU that did the damage. Shit – 44 and needing a hip replacement. At least St Vincent’s did their absolute best to get me in for the operation asap – I only waited six weeks. Wasn’t happy about it but thought, I’ll get through this no problem and hopefully back to work.

Was I ever wrong! I’m no sooner out of hospital and trying to get on with life, doing all the physio, than the other hip is diagnosed with AVN. Only this time they are saying the HIV meds are the culprit. Not quite right; it was the combination of HIV meds and corticosteroids. Evidently the same is happening to other poz people around the world.

Wrong again
So both hips – hmm, I’ll manage somehow. Wrong. Very shortly following the diagnosis of the second hip problem, the shoulders start going. They didn’t think the AVN would spread to other joints. Wrong again. In for a shoulder replacement. At least it was only three days of crappy food – and plenty of chocolate brought in by friends.

Then the knees start playing up and my joint specialist diagnoses me with … you guessed it, AVN. The AVN has now spread to six major joints – hips, shoulders and knees. About this time I was also told I could be waiting three years for the second hip replacement. No way. I went to my GP and said if I have to wait three years in this pain, I will cease all medication apart from pain relief and refuse treatment and let the body start shutting down. He rang the orthopaedic surgeon and they came up with a date eight weeks away.

So far I’ve had both hips, the right shoulder and both knees replaced. By the time you read this I should have had the left shoulder done as well. My friends joke that I’m bionic – I reckon I’ve got more metal in me than Arnie in Terminator. All titanium. When they run a handheld metal detector over me, it beeps on all the joints that have been replaced.  Four joints so far and one in the head from an aneurysm clip. I joke to friends that at least I know I’ve got a brain – they opened me up and had a look.

One operation a year
Hospital waiting lists can be a problem but they are doing one major operation a year for me and I think that’s probably the best I can hope for. I get all my operations done at St Vincent’s and I joke to them that they’ve had plenty of practice at putting me back together again and they’ll get it right one day.

I was told that the AVN shouldn’t spread to my elbows or ankles but have recently been diagnosed with it in my ankles. They cannot be replaced. That it has affected my shoulders is unusual; it is normally weight-bearing joints only. Eight joints in total.  At least it shouldn’t affect the elbows.

Work
I haven’t managed to go back to work. I used to do restaurant management and then part-time waiting work. I have managed to get back to volunteer work sometimes (when I’m not recovering from an operation). And I went back to study. In the past three years I’ve completed my Advanced Diploma of Hospitality Management. I’d only set out to do the Diploma (passed with Distinction) but I decided that as it was only another six months, I’d do the Advanced Diploma – I passed this with Credit average. I was a little put out that my marks dropped but can live with it seeing as all the pain had made my depression much worse. The disability coordinators at Ultimo TAFE have been wonderful as have most of my teachers in rearranging my timetable and letting me do some stuff from home as the depression made it difficult to get to school some days. I had the graduation for both diplomas at Ultimo TAFE and it was a very nice surprise to win one of their major hospitality awards for the year. It has been incredibly fulfilling to achieve such good results as I had a very rough secondary schooling – the homophobic abuse and bashings made my school life hell.

I’d like to get back to work one of these days as I don’t really want to be on a pension for the rest of my life. But what employer will touch me with my joint problems? And there are very few part-time management jobs available in hospitality.

Good to be alive
Last year I celebrated my 50th birthday. I took over the ground floor of the Oxford Hotel for a small party of about 100 people. I woke up on the day and thought, “I never thought I’d see this day – it feels good to be alive”. Even though life can be fucking crappy sometimes, it’s a damn sight better than being dead. Sure I have to put up with a lot of pain, but medication helps that most of the time. It’s my friends and family that make life worth living – and I thank them for their support.

If you’re poz and having joint problems, get it checked. It might not be just old age (or older age), it could be AVN or similar. But it’s not the current meds causing problems, it was the meds in the ‘90s, the protease inhibitors; so don’t stop taking meds now if you have a joint problem.

Wayne Daubney