A decade ago I nearly died. Rushed to hospital seriously ill, and given just a 1-in-3 chance of surviving to the following week. I had HIV, and it nearly killed me.
It helps to step back a bit
In hindsight, I had been ill for some time, a slow gradual wearing down of the body. I seemed to have rather too many little colds, a few too many days feeling tired.
But heck, I was working all the hours the gods send, so of course I was tired. I just needed to finish some exciting projects, and go on a nice long holiday. Later in the year. Maybe. If I had some spare time.
In fact, the projects did complete, but I was a bit busy with some more mundane work, and it was the summer of 2004 that I really started to notice things going wrong. Tired so much of the time, little infections getting more frequent. That sort of thing.
Just need a holiday. In fact, I booked a holiday. A really exciting trip to North Korea. Well, you know me by now, I never do the ordinary.
Sadly, things got worse. I wasn’t registered with the NHS at the time — to register meant taking half a day off work to see a nurse, and then another half day off work to see a doctor — just to be registered. Sorry. too busy for that. After all I never get anything worse than a bad cold.
Who needs a doctor for that?
But, now I did, so popped along to see a private doctor who could see me there and then. He suggested some blood tests and the following day, the results confirmed some degree of anemia. At least I now knew it was an illness, and not just overwork. But what was the illness?
More tests needed — so I was sent to a specialist in The Royal Free. I was still paying for tests at this time.
Anyhow, the consultant turned up asked questions and then got onto my lifestyle. Am I single? Yes. Am I gay? Yes.
Ahhh he exclaimed, I need a HIV test!
Why? Well, the patient is gay and ill. Has to be HIV doesn’t it? Well, no it damn well doesn’t!
Can I have a diagnosis based on medical evidence rather than your personal prejudice?
More tests. Two weeks later, go back for results. Nothing to report, but I looked a bit better. Give it a month, and if not better go and see a GP.
And that was that. Piss off and go away. I think it cost me about £800 for that little nugget of homophobic wisdom.
Well, OK, so I went away, but by now it was obvious that it wasn’t simple workload making me ill, and work were aware that not all was as expected, so I took the necessary time off to register with the local GP. Was told to make an appointment.
One of the difficulties with a gradual illness is that you don’t wake up one morning with a bad cold, which is easy to notice, but very slowly wear down. That very slow process is unnoticeable and being ill is the new normal. You think you’re always like this, because you didn’t wake up one morning with a bad sickness. So while I now knew something was wrong, it still didn’t seem that serious. I was only a little bit tired wasn’t I? No, in hindsight, I was very seriously ill, and had been for ages, but being ill was my new normal, so I never even noticed.
A week later, the appointment with a nurse at the GP surgery, who tested me for diabetes.She agreed I needed to see a doctor. Make an appointment.
A week later, the doctor agreed that I was pretty ill, and said I should go for some blood tests. Make an appointment.
By now, the slump in health had accelerated, and I was using a walking stick to help get around as I simply couldn’t walk unaided. I was just far too tired, and everything was taking just so incredibly long to arrange.
It was later was suggested that the adrenaline from the exciting projects I had on at work had been masking the illness for some considerable time, possibly as much as two years, and it was the completion of those tasks and the return to normality that let the underlying illness finally start to show itself. Hence the apparent sudden collapse in health in just a few short months.
Anyway, two weeks later, I came in for the blood tests, and was told that it would take two weeks to get the results. Make an appointment.
Then I collapsed.
Was back at the office and had headed down the hill to the local coffee shop for lunch, and headed back. The next thing I can remember is waking in an ambulance with the HR manager sitting next to me. I recall crying, although I am not sure why.
I can’t recall which hospital I was taken to, although I later learnt that it had a pretty dire reputation amongst nurses elsewhere. A reputation I can fully attest to being accurate.
Looking back, as my memory is somewhat hazy about that time, I recall some really anemic sandwiches being offered for lunch. The doctors said I was burning up, but as it was so cold in there, what did they expect when I wrapped up in blankets to keep warm.
I later found out that I had agreed to a HIV test, although I don’t recall that. They sent the results — several weeks later — to my GP, which at the time was a serious breach of patient confidentiality.
Anyway, back to the time, what I do recall is discharging myself from hospital. The place was useless and doing nothing other than starving and freezing me. I also had a cat at home to look after, and he was probably as hungry as I was.
That was, I think, a Thursday. I went home by taxi — the office manager had stuffed a wad of cash in my pocket as was taken away by ambulance — and was due to see the GP in about 10 days time, but was able to bring the appointment forward to the following Wednesday.
I have no memory of those intervening days, which were probably spent in a stupor.
Time to hobble over to the GP, who took one look at me and frankly, blanched a bit. By good fortune, he had the blood tests back early and basically said I had to go back to hospital immediately.
A call to a different hospital to make the arrangements, and the first inkling that this was more than just bad bug was when he said that yes, he would like the consultant to come out of a meeting and answer the phone immediately. Yes, it was that serious.
Up to now, all I was really thinking is that this was an infection, something that can be treated with pills once we work out what the problem was. Nothing serious. Routine. Mundane. Just give me pills.
This was also the moment that saved my life. A GP who recognised what was going on, get an emergency admission to the right hospital and spoke to the right consultant.
It’s difficult to fully convey just how ill I was by now. Packing a small bag for the hospital proved exhausting. I had to find a taxi, but needed to go via the shopping centre to pick up a dressing gown. Just trying to think of how to book a taxi was difficult now. All the little things of life that were just a bit too much effort.
I arranged with someone I knew to feed the cat for a couple of days. I cancelled a planned trip to Chernobyl (as I said, I don’t do normal), and staggered off to hospital in the evening.
Even then it was put to me that I would be in for a couple of days of tests. Nothing to worry about.
The following day I was moved into an isolation room, due to concerns that I had contracted tuberculosis. The doctors also wanted to run a HIV test, but I wasn’t allowed to have one without counseling first. However, the councilor was too busy to come to me, and I was too ill to go to him.
I’m a pragmatic sort, and after pointing out that counseling wont change the outcome of the tests — just do whatever needs to be done. That included being wheeled around to sit inside big machines — probably x-rays or whatever.
Everyone around me wore face masks to protect themselves. When you’re in a strange place having strange things done to you by strangers, it’s an especially discomforting sight to see so many anonymous eyes peering over medical masks. The lack of facial clues in communications being particularly disorienting.
A steroid drip was applied, but quickly had to be weakened to homeopathic levels after the normal strength dose sent fire racing though my veins and left me screaming in agony.
And I was so cold. So very cold.
Isolation rooms are cold as a side effect of how they operate, but the illness was making it worse — except in fact I was burning up and going into shock, which meant I felt cold when I was the opposite. A pity the previous hospital didn’t bother explaining that.
It is however unbelievably difficult to lie in bed feeling like you are shivering in cold, and constantly being told by nurses not to wrap up warm.
Alternating between shivering in cold, and drenched in sweat, all I can remember really is being in constant pain from needles in the arms, discomfort from being kept awake constantly by nurses and tests, oh, so many tests. Just wanted to sleep. Go away. Leave me alone. Sleepy.
I later found out that they had been fighting to stop me going into a coma, so they had to try and keep me reasonably awake throughout the weekend. But I can tell you, it’s a damn uncomfortable way to cling to life.
Well, I survived the weekend. Later told that I had been given a 1-in-3 chance of dying, I can’t say I fought the illness, as frankly was too damn ill by then to care anymore. Just leave me alone to go back to sleep.
The test results were also back. I had a serious lung infection. It didn’t affect my breathing, but it was slowly destroying the lungs ability to transfer oxygen to the blood. No oxygen == no energy. Suddenly it all made sense.
Oh, and yes, I did have HIV.
That damn consultant at The Royal Free had been right, even if his diagnosis had been based on homophobic stereotyping instead of medical evidence.
So I can’t even complain about him being wrong. Homophobic and correct. How annoying is that!
However, in part thanks to that consultant’s advice to just wait it out, I was by now far too ill to start HIV treatment, the priority was to deal with the other infections first.
As bad as the weekend had been in terms of chances of dying, I had spent most of it barely aware of what was going on. What happened next will be seared into the memory for the rest of my life.
The bone marrow extraction
Some say that a bone marrow extraction is a moderate affair, others liken it to giving birth such is the level of pain it can cause.
A chap came in and told me he was to carry out the procedure, which was to go in through the back of the hip, and after being put into position he asked me if I wanted someone to hold my hand. What? Don’t be daft!
Then again, as the pain rose I began to wonder. Searing pains inflamed the area he was working on. And suddenly he was finished. Not too bad after all. What was the fuss about? Then he told me he had just administered the anesthetic, and would wait for that to work then come back for the surgery.
All that pain was just the starter, the d’oeuvre for what was to come. Sadly yes. A while later, the deliverer of pain returned, and possibly motivated by the look of horror I probably gave, this time he came back with a nurse, who took my hand to hold onto.
There are no words to describe what happened next. All I knew is that agony had arrived. It suffused your entire being, not physical but emotional. The pain may be localised, but the agony is all consuming.
All I was left with was a mote of a voice exhorting me to lie deadly still lest any movement jolted the instruments of torture and the whole thing had to be carried out again. It was the only thing left in my existence, to lie absolutely deadly still. Everything else was was agony and an overwhelming urge to lie still. All other thoughts had been suppressed by the agony.
Save the hands. It wasn’t the doctor stopping that ceased the pain. It was a pair of hands drawing the patient up out of the fire that put an end to the agony. I could have held onto the metal bar on the bed for strength. But human hands did more than provide physical support, they offered something utterly indescribable, yet essential.
I was later told I had a high tolerance for pain, but at the time, all I could do was cry. I don’t cry very often, but that day I did. A lot.
Oh, and a work colleague contacted me to help sort out my cat. I cried again.
I was also confirmed as not having TB, so could be moved to a normal room, although as the window was broken, it proved to be nearly as cold as the isolation room.
There was another scare — my eyesight.
I can say with some level of conviction that had my eyesight failed, then I would not be alive today. My eyesight is too essential to my existence. Some people can live without it. I can’t.
Fortunately, the scare turned out to be nothing serious, although ever since I left hospital, I’ve needed glasses. Didn’t really need them before, but afterwards — can’t read without them.
It’s just another of the long term effects of having such a serious illness.
Next few weeks
I can’t really say what specifically happened over the next few weeks. It is a bit of a blur.
Blood tests every single day. A mountain of pills to take. Sleeping loads.
There was a small newsagents in the hospital, but they didn’t sell anything more challenging to read than the tabloids, so I would get dressed each day and slowly hobble down to Barbican to the newsagents and pick up every current affairs magazine I could buy.
Not just for reading, but I just had to get out and walk for a bit. The nurses were very unhappy with me for doing that in case I collapsed, but it wasn’t just boredom — I had to challenge myself physically each day at something. Walking, with a stick, very slowly was about the most I could manage.
Other than that, most of the time was spent asleep, or just mentally shut-down.
Work had already told me not to even think of returning to the office until the New Year, so I plotted ideas about where to visit in London during the rest of my time off work. Yes, I was still a bit naive about just how seriously ill I was.
Oh, and getting washed with a bandage around your arm is very difficult as you have to keep it dry. Basically I showered with one arm hanging out of the curtain. Not for medical reasons, but because it took hours to dry out. An arm wrapped in a cold damp bandage until lunchtime is not pleasant.
And I couldn’t shave. I had expected to be there for a few days, so didn’t pack a shaving kit. By the time I left, I looked like a hipster.
There finally came a point at the end of November where the drips were removed, the last tests carried out and doctors declared it was time to go home.
Then I collapsed. Again.
Turns out that about 10% of patients can have an allergic reaction to one of the medications, and bloody hell if I wasn’t in that percentile. After everything else I had gone through, that as well. Damn!
Home cancelled, bedridden again and drips plugged back in. While the recovery was swift, they wouldn’t let me home that weekend. Which was surprisingly emotional as going home had been a goal to achieve, and I had failed. But only for a few days.
Finally though – home time.
My employers had sent cleaners into my flat to give it a good scrub, which was useful as ill people tend to be useless at cleaning up.
The doctors gave be a huge bag of pills to take, appointments to attend, and well, that was it. Off you go.
No sort of formal farewell, just get dressed and leave. No forms to sign, no one to say goodbye to. It all felt rather odd. An anticlimax, wrong, out of place. Bereft of a final moment of closure to say “hospital, you are ended”, I simply wandered out of the building.
Getting home was oddly comforting and disconnected. It was my flat, but also a strange place. I had been away for so long, and the cleaners had been all over it. Paperwork stacked in neat piles, DVDs the same, everything just a bit too sterile.
But, still, I was home.
The next few weeks were spent slowly recovering. Mostly asleep, but I forced myself to go out to the shops everyday. A 10 minute walk was taking more like half-an-hour, and I was painfully thin.
If you’ve ever wondered what the effects of a month of hospital food can do, then let me suggest it as the greatest crash diet known to mankind. I was now so thin that sitting down hurt, as the fat had gone from around the bones — that is the literal meaning of being painfully thin.
Still had a belly though. Arms and legs like breadsticks, but I still had a sodding fat tummy. Shesh!
In addition to losing weight, I had also lost my memory. Didn’t know it at the time, but one day hobbling back with a sack of cat litter I pondered doing some work on the laptop. The what? Since when did I have a laptop computer?
Then it hit me. I switched to a laptop as a consequence of business travel, for a major project that had taken months of my life. And I had forgotten all about it. Until then. Six months of my life had vanished, and I hadn’t even noticed.
That was the nature of the memory loss. The memories were there, but needed triggering and that could, sometimes, recover them. So the next few months were spent in a heady daze of confusion as people talked about things that I had no idea what they were talking about, followed, sometimes weeks later by explosions of realisation as the memory popped back into place.
It was a very odd few months.
Although I had been too ill to start HIV treatment, it had to be started as swiftly as possible. They don’t like starting treatment in the run up to xmas, but it was deemed to be sufficiently urgent in my case to drop that restriction.
Eight pills per day, and side-effects.
Weird dreams were by far the least troubling, although some of them were indeed very weird, and vivid. However, it was the diarrhea that was crippling.
While on that treatment, it was not possible to be far from a toilet. I was strongly advised to keep spare underpants and tissues on me at all times, for it could strike at any time. When the discomfort started, that was my 15 minute warning — time to find a toilet.
Nothing could prevent release. No degree of butt clenching would hold back the explosive outpouring. It was find a toilet, or else.
Fortunately, all hopes of long walks having been cast aside by sheer physical weakness, being far from a toilet was not a problem, and the emergency supplies needed only once.
But I did go through a lot of bleach those months repeatedly cleaning my toilet from the explosive effects of the HIV medication.
On the upside, the medication worked.
With a speed that shocked my doctors, within a month, the viral load collapsed from around 700,000 to undetectable — that is, somewhere below 50 parts per milliliter. Likewise, the CD4 count of my immune cells jumped from just 20 to a more stable 200 — and within a few months to normal levels of around 600.
Fortunately, the bowel clearing pills were dropped a few months later, and the “legal highs” were removed as well.
I also no longer had to take a medication for the lung infection. Which was truly fortunate as it was so vile tasting that the only way to take it was to use a syringe and squirt the fluid as far down the throat as possible and swallow before the gag reflex kicked in.
Satan’s diarrhea was my less than fond nickname for it.
I wonder what the police would have said had they had reason to visit my flat at the time — and saw a draw full of syringes!
By the middle of 2005, while still recovering, the illness was stable and the HIV under control.
I was also back at work.
To the slight annoyance of my doctor, I had insisted on going back just a month after I left hospital. Frankly, there’s only so much staring at walls a person can do, and I was running out of DVDs to watch.
More prosaically, some level of stress is good, and I needed to be stressed and to push myself physically and mentally. Laying around in sloth is not how I recover from being ill.
Although only able to work a few hours a day it was good to get back to the office and back into the routine of the daily commute. Very occasionally someone would see me hobbling on to the train with a walking stick and offer their seat. Not often though.
It was a few months later that I was able to finally drop the walking stick as well. I was progressively using it less as the months passed, but eventually, about May time, I took the final step of going to work without it. As I hated the walking stick for how it represented my continued weakness, it was quite an important milestone.
The mental sluggishness took far longer to shake off — probably two years to feel that the recovery had gone as far as it could. I like to think that difficulties felt today are more due to the passing years that affect everyone, rather than those tiny parcels of RNA floating around in my blood stream.
I didn’t really want to write this article, but then again if I missed the anniversary, I might hate myself for not writing it. Even as I am typing, I am still not sure if I will publish it, or even why I am writing it.
Certainly I can argue that in part its a warning to the growing number of people who think HIV is a manageable illness, which it is. But being manageable means people think that being infected by unsafe practices isn’t really an issue any more.
You just have to take some pills. Quite easy, quite manageable. Isn’t it?
Everyone reacts differently to the side-effects, and while doctors work to minimize them, they never go away. My eyesight was damaged, I struggle to concentrate like I could before I was ill, my mental faculties are at best described as average now, whereas they used to be frankly, above average. I am at a much higher risk of dementia.
I had to give up drinking strong coffee.
If that last one isn’t an inducement to be careful, I don’t know what else to say. It’s not my way to preach, but some people out there are behaving like bloody idiots.
Today it is a somewhat hidden illness. Manageable yes. Easy to hide — a few pills in the evening when no one is looking is all it needs these days. I take mine after supper with a glass of fruit juice. Quite a healthy approach, getting HIV means I drink more fruit juice. Yay, an upside!
We’ve forgotten what it’s like to be seriously ill with HIV.
I cant go out for the evening without having to remember to take pills when I get home. I wont die the next day if I miss a dose, but miss a few, and the virus can get a foothold again. And it wont let go the next time.
Can’t come home in the evening after a nice night out and relax, I must obey my viral master, who demands that I take pills, or else.
OK, I rebel a couple of times a year — I decide not to take them, on purpose. But I can only do that because I adhere to the regime every other day of the year. It’s my way of just occasionally sticking two fingers up at the doctors and the virus that controls my life. I am in charge again. For one night.
That is the regime that has to be followed, but it is spoken of too rarely now. It’s a hidden aspect of the disease.
I joke, morbidly, that what our celeb-mad culture needs is a celebrity dying of AIDS. The 1980s scared people in part because celebrities were dying looking like they had been in a Nazi concentration camp. It focused minds.
In part, my own stupidity and lack of attention left me looking like a throwback to the 1980s, but modern medications, and a dose of sheer dumb luck, worked to undo the damage. Well, some of the damage at least.
The only message I will push out there is the value in being tested. I thought I was as low risk as it was possible to be, and I got the confounded thing anyway. Had I been minded to be tested, then I wouldn’t have been rushed to hospital.
One of the remaining stigma’s about HIV is the perception that it is something that afflicts those who, ahem, are rather more promiscuous than average. And certainly, more partners does mean more chances that you will meet someone who is HIV+, but it takes just one moment to get infected.
Monday you’re a virgin. Tuesday you’re positive.
I wasn’t quite at that extreme, but HIV infection isn’t something that builds up over time, but a single one-off moment. Unless you are 100% monogamous, or 100% celibate, you are at risk.
No matter how slight the risk, if there is a hint of risk, get tested.
I was lucky, my bedroom antics were so few and far between as to not leave me with a list of people to phone up and explain that they needed a HIV test, because, erm, ahh, opps.
You’re probably fine, it’s a surprisingly difficult virus to catch. But, if unlucky, then at least you know. You know to be a bit more careful with partners and reduce the risks of passing it on. You don’t want to have to make those phone calls.
A test takes just a few minutes to carry out and get a result.
And when the time comes, medication can be started when it is correct to do so, unlike your idiot correspondent, when it was almost too late.
Since then though, for me, life has slowly returned to normal. I still get the occasional bout of manflu just like everyone else (and right now as I am typing this!), but otherwise live an outwardly normal life. Pills in the evening, yes a bit of a nuisance, but hey ho, I am still alive. I am fortunate, as there are other illnesses that impose a greater burden on the daily lives of those afflicted. The side-effects are a modest irritant these days, and most of the stigma of having HIV has passed in to history.
It’s still difficult as a single chap to overcome some prejudices when out seeking dates, but in all honesty, I suspect that is more due to my undatable personality than my HIV status.
But for all the normality of life, every few months I have to go back to hospital, have needles stuck in me, impertinent questions asked about my life and when I leave, this is what I leave behind.
That is the reality of living with HIV.
I am a bit of a pragmatist in life. If I can change something, and there is likelihood of being successful, then expend effort on the task — otherwise why worry about it.
People who sigh audibly when the train stops for a long time baffle me.
Likewise, when I was diagnosed with HIV the entire apparatus of the support industry swung into action and I came under fairly surprising pressure to comply with their vision of how devastating the diagnosis would feel.
Except that it didn’t.
OK, I was hardly happy about it, but it had happened. So what would, as one person exhorted me to — running to the top of a hill and screaming about it — do to change the situation? I could barely walk to the shops, so running up hills was a daft suggestion anyway.
I was ill, and wanted to get better. Oddly, none of the post-hospital support seemed to offer that route. It was very much the “you’re disabled, here are the benefits you are entitled to” sort of stuff, and hardly any sign of the “lets help you get back to health”.
My goal was recovery and return to normality. Their goal seemed to add another victim to their collection of people in need of their support, their assistance, their counseling.
I was often asked to see a psychiatrist as it seemed that I wasn’t behaving correctly. Where was the grief, the anger, the despair? It’s as by simply accepting the situation and dealing with it in my own way, I had broken the rules.
I did see a psychiatrist. Once. Useless twat. All he wanted to do was talk about how I felt about the diagnosis, which was frankly, not something that needed to be talked about — unless talking changed the outcome? Nope, didn’t think it would.
Everyone’s different, but at the time, I was a square peg being hammered unwillingly into a round hole.
The only diversion into self-pity is an occasional musing about the fairness of it all.
I am not a fan of the concept of fairness, as if it is a quantity to be measured out and allocated — we all make our own luck in life, and I’ve had some good and some bad.
But there are times when I think about the stereotype of the HIV positive person as being someone who partied their life away and ended up paying the price. As I noted earlier, its a false stereotype, but it persists.
My life was work, and lots of it. Not much partying going on.
I seem to have been left with the hangover, without the fun the night before.
And just occasionally… that doesn’t seem fair.
15th anniversary addendum:
I wrote this 5 years ago, maybe time for an update. Life carries on, and based on how shattered my body was back then, I’ve lived beyond the life expectancy they predicted at the time. Might need a pension plan after all.
Medical advances continue, and where I used to pop a handful of pills per day, it’s down to three (soon to be just two) per day. For me that’s a minor issue, but for a lot of HIV+ people, the “pill burden” has been a serious issue, so that’s good all round.
The biggest transformation has been the rise of PREP, as a preventative against being infected, and evidence that HIV+ people who are classed as undetectable can’t really pass the virus on to other people either.
There’s still a lot of ignorant stigma out there about being HIV+, and I still get irritated at times when that stigma appears, the regular medical tests, and the drawer fuller of pills at home. But life with HIV in the 21st century can be almost humdrum now, routine, average, and it’d be nice if the prejudices of society caught up with the reality of the science.