There’s no doubt that HIV is an under-discussed issue and attracts a fair amount of stigma – but the situation regarding stigma and education about Hep C is even worse. Now imagine living with both.
I met ‘Adam’ via Twitter, he’s a gay guy in his thirties who has recently been diagnosed with both HIV and Hepatitis C. I asked him if he’d let me interview him for UKPositiveLad.com and he very kindly agreed, on the basis that it was done anonymously – which is entirely understandable.
ME: Thanks for talking with me Adam, let’s start at the beginning. You’re HIV+, when did you find that out?
ADAM: I was diagnosed in January. I went to 56 Dean Street, they have something called the Code Clinic on Tuesday nights that is for gay men who have risky sex or use recreational drugs — it’s meant to be very non-judgmental, and really is. I was diagnosed with HIV, and with Hep C co-infection
ME: You got both diagnoses at the same time? That must have been difficult?
ADAM: I got the HIV diagnosis that same night, but I had to wait until the next week to get the results from the blood test. I was expecting the HIV to be confirmed, to find out about viral load, CD4, etc but I was not expecting to hear about Hep C. It felt like winning a really shit lottery… all my numbers came up… and then there’s the thunderball!
ME: So what happened next? Were there more tests or did you go straight onto treatment?
ADAM: My CD4 count was just over 200, which is really low. I started on ATRIPLA for the HIV just a month after my diagnosis. They also put me on antibiotics, which were really scary – I’m allergic to the one they usually give out, so they had to give me one that is normally used for people with leprosy. It was really strong and gave me upset stomachs, so that freaked me out even more.
ME: So that was January, we’re now in June – how are the two strands of treatment going? Let’s start with the HIV.
ADAM: Well, the HIV treatment is much better now. I was on ATRIPLA for the first two and a half months but I did not like it. I had very vivid dreams every night… mine tended to be like really heightened sitcoms, but sometimes they were thrillers. But the reason they took me off ATRIPLA, is because my liver function was very elevated.At one point, it was more than 1000% of what it should normally be, in a non-Hep C infected person. So now I’m on Truvada and Raltegravir - three tablets a day total, but not tied to sleep – it’s wonderful! I have an undetectable VL and my CD4 was 370 last week.
ME: What about the Hep C?
ADAM: Before I got to meet with the consultant, I had to do a series of tests…
The first step was going for an ultrasound. (Yes, just like pregnant ladies). It was me, and a corridor full of all these sweet hetero couples, they were all loved up, and waiting for their first scan. I felt totally awkward, as I didn’t bring a lady with me and obviously I wasn’t there cos I was with child. The ultrasound was normal, but I found out I have two gall stones (again with the random unexpected health news!).
After the ultrasound, they sent me on for another test, called a Fibroscan. It’s kind of like sonar, they hold the device up against your tummy and it ‘pings’ your liver. Based on how quickly the pings come back, they can get a reading of how fibrous your liver is. If your liver is damaged (ie, scarred), then it is more fibrous, and it takes the pings longer to come back. Unfortunately, the Fibroscan results were inconclusive. There are 4 levels of Fibroscan ratings: 1 is that your liver is fine, 4 is that it’s damaged – I was in the 2-3 ‘indeterminate’ range. However, they think this could just be because the ATRIPLA was causing such heightened liver function, that my liver was swollen.
ME: So what’s the next step?
ADAM: So the consultant says that I have two basic choices. I can start treatment straightaway or wait 3 to 5 years, and see if any new treatment options become available.
I’m going to wait to start treatment in about 4-6 months. I have a few big projects I have just started that will finish by then — I do a lot of creative work, and have finally just adjusted to being HIV+ and into a good routine with those meds… so I kind of want to get through a few big things, before dealing with the side effects.
ME: What is the treatment as it stands? What are the side effects?
ADAM: Right, the treatment lasts for 48 weeks. For the 12 weeks there’s one pill once a day, there’s one pill you take every day for the entire 48 weeks, plus a weekly injection for the the each week for 48 weeks. All on top of my three pill a day HIV treatment.
The side effects of Hep C treatment are very strong, they can include anemia, a rash, depression and mood swings. However, they will normally treat the side effects, rather than withdrawing the Hep C treatment, if this is possible - which tells you how seriously they take the need to treat the Hep C.
ME: How’ve you felt about sex since both of your diagnoses in January?
ADAM: Sex is complicated. For the first few weeks, I was not interested in it at all, I was really worried that I had just gone off it entirely, but I’d got myself in such a mess, it wasn’t really even a concern.
I usually barebacked before, but now that is especially fraught. I used to think “oh, if I do end up HIV+, then it’s OK to bareback with other poz guys” - but that is really not the case when you have Hep C.
Given how many profiles on websites like BBRT now mention the “my last Hep C test” I’m sure I am not the only one who’s been dealing with it, and of course, whoever I got it from either didn’t know their status, or they did and carried on regardless.
ME: Have you told many people your Hep status? If so how has it gone down?
ADAM: To be honest, no I haven’t. It was really down to you and a few other openly HIV+ tweeters that I got up the courage to get tested, and face it all. I have told one or two good mates, who I used to have sex with and they have been supportive.
ME: There seems to be a lot of stigma attached to Hep C, especially among HIV+ gay guys. Have you felt that?
ADAM: I think part of it is down to ignorance of what is actually involved in treating Hep C, and in part down to a double standard where guys who are HIV+ and bareback (and, in many cases, use drugs recreationally as part of the fun) will then get all worried about getting Hep C, but not enough to curtail any of the activities that would put them at risk.
You see it all the time on hook-up websites – guys have pictures of themselves getting barebacked and fisted, they put they are positive and use drugs, but put in a note about their last Hep C test date which is often six months ago or longer. You have to wonder how much risky sex they’ve had since then.
ME: Finally, how much did you know about Hep C before you were diagnosed – compared to now? Was it on your radar?
ADAM: I knew Hep C was out there, but to be honest, I didn’t think I would get it. I had been into fisting for a while, but had been very careful about who I’d let up there. I didn’t really know much about the treatment, but I did know that it was generally treatable. I had known of at least 2-3 guys who were HIV+ who got Hep C, had the treatment and cleared it so I guess I wasn’t really worried about Hep C.
So yes, it was on the radar, but I wasn’t especially worried, and I knew that if I ever did get it, it would be treatable. But I had never considered the possibility of HIV and Hep C co-infection, or finding out at the same time. And I didn’t realise quite what all was involved in adjusting to treatment, and to the reality of the diagnosis.
Thank you to Adam for sharing his story with us, if you’d like to know more information about Hepatitis C you can visit the Hepatitis C Trust’s website http://www.hepctrust.org.uk/ and follow them on Twitter at @HepatitisCTrust
It’s 00:50 and once again I can’t sleep.
My insomnia has kept me up for the best part of three days in a row now, my mind is tired, my body is exhausted and yet I still can’t sleep.
I go to the bathroom to top up my water glass and I catch a glimpse of myself in the mirror, I look like death warmed up – my skin pale, bags under my eyes so big you could carry your shopping in them, and I’m breaking out in spots -my body has had enough but my HIV meds won’t let me sleep.
This has been going on for months upon months now, sleeping only three or four nights a week, the rest sat up trying to keep myself busy until it’s time to goto work. Sadly it’s become something of a routine – a routine that’s causing me to burn out.
I wish I could say that insomnia was the biggest of my concerns, but sadly it gets worse, over the last few weeks things have been going bump in the night. I’m hearing and seeing things that aren’t there. It started off as little things, a thud in the hallway, a shadow out the corner of my eye – but progressively they’re getting more and more significant – I’ve heard the front door being hammered only for no-one to be there, giant spiders on the ceiling, I’ve even seen myself sat in my desk chair.
I’m reasonably sure that it’s not a inherent problem with my mind, so much as the medication – the hallucinations only happen after I’ve taken my meds and on nights I can’t sleep. So I think it’s pretty reasonable to conclude that they’re side effects that I’d normally sleep through – but in my perma-awake state I have to endure. What I’m not sure, however, is why they’ve only started now – nearly 18 months after I started this combination therapy.
I’ve asked my doctors to change my HIV meds before based on my sleeping issues but they’ve told me to wait it out, I’m hoping when I see them on the 17th that they’ll take the news of hallucinations and even less sleep slightly more seriously. Either that or they’ll lock me up, and if they do I hope they have wine.
Life+ the must have HIV app
It seems like there’s an mobile app for everything these days, apps to monitor your sleep pattern, make you look old, give you a squeaky voice – but how about an app that’s actually useful?
The Terrence Higgins Trust (THT) have brought out a new iOS (iPhone, iPod, iPad) app aimed squarely at those of us in the UK living with HIV. Now, there are already apps out there that remind you to take your medication, chart your blood results, or give you health advice – but for a price, and certainly not in the same place.
Say hello to Life+ from THT…
- Create medication reminders
- Look up HIV medication information
- Record and chart your blood results
- Jot down notes to discuss with your healthcare team
- Access a wealth of HIV and sexual health information from THT’s vast knowledge banks
- Log onto the MyHIV.org.uk community forums
- Contact THT Direct for phone support
How much does this cost I hear you ask? Not a single penny. All you need is a free account at MyHIV.org.uk – so what’re you waiting for? Head to MyHIV.org.uk and create your account (if you’ve not got one already!) and then head to the Apple App Store and download Life+
(note from THT: there’s a little glitch in the app at the moment that means you need to give it a few seconds to load, this should be ironed out in the next update)
Yesterday morning I awoke to a tingling on my upper lip. I sat bolt upright up in horror, and looked in my mirror. Sure enough, there it was, another coldsore – and you’ll remember that only a week or so ago I had a huge one on my bottom lip. Gutted. I tried to call my local GP (who you’ll remember I don’t have a huge fondness for), to see if they could dish out some Aciclovir to nip it in the bud, but despite calling all morning no-one answered the phone, I can only assume that they were closed, or busy laughing at patients.
Then I tried calling my HIV clinic, which isn’t exactly local, and they said that they could see me if I got there within 30 minutes. Some hair-raising driving on the boyfriend’s part and we made it – just. The doctor saw me fairly quickly and gave me another week of Aciclovir (three times a day), apparently whilst unpleasant the coldsores are a good thing, a sign that my immune system is asserting itself again. He also treated me to a Hep B booster in my left arm, I know, lucky me!
After that he took time to go through my latest blood results with me. My CD4 has risen from 332 to 381 and my Viral Load has dropped dramatically from 354 to 46 – almost ‘undetectable’! Also of note was that my Vitamin D levels are rising steadily as I take my daily supplements. I was so pleased, it gives me a real feeling that I’ve got control of the situation, I won’t be beat by HIV.
For those of you worried about starting treatment, or those of you considering starting treatment early (like I did) – DO IT. It’s the best decision I’ve made for myself in a long time. I’ve gone from a Viral Load of 79000 to a Viral Load of 46 in three months. I feel amazing. Here’s to the rest of my life…
Just a short blog post today, more a diary entry if you will.
I had a bit of a realisation last night that I’m finally becoming comfortable with my ATRIPLA (HIV medication). A bunch of my friends had all congregated at my friend Paul’s house last night for movies, wine and a catch up. We’d not seen each other since before Christmas, so there was much to talk about. Some of the people in the group know my HIV status, some don’t – one of the guys in the group is HIV+ himself and has been a great support to me.
So we’re part way through watching a horror film when suddenly my phone starts buzzing, it’s my nightly reminder to take my ATRIPLA. Normally I would have made an excuse and escaped into the hallway or kitchen to take my pill, but last night I thought “No! Fuck it! Who cares? These are my friends. If they ask about it I’ll tell them, I’ve got nothing to be ashamed of!“. So I just got the pill out of my pocket and necked it with my beer, right there on the sofa. The thing is, no-one even noticed that I took anything – what have I been making such a fuss over?
“No! Fuck it! Who cares? These are my friends. If they ask about it I’ll tell them, I’ve got nothing to be ashamed of!”
The whole thing has made me realise how much more comfortable I am about taking my medication, much more so than when I started – just two months ago. Back then even when I was on my own I’d stare at the pill and think about it before I swallowed it, sometimes for minutes at a time. Now I take it without thinking about it, and am even happy to do it front of my friends.
I think this is what they call progress!