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Life with HIV & Hepatitis C – Adam’s story
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.
THE INTERVIEW:
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.
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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
Love,
Tom
UKPositiveLad
Am I mad or is it the meds?
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.
Tom
UKPositiveLad
Welcome to Club Insomnia
It’s 04:44am. I’m laying in bed. Wide awake.
I can hear the distant whoosh of cars on the main road, the hum of fridge freezer, that irritating high pitched noise that you’re not sure if it’s your ears or something buzzing or something else making it, and most disturbingly of all – my own thoughts.
I’ve been trying to get to sleep since midnight. I did all the right things – I had a relaxing bath, drank some water, took my pills, turned my phone off, turned my computer off, turned the lights off and got comfy. Sadly the sandman didn’t want to pay me a visit.
Laid there in total darkness I tried to clear my mind of all thoughts. But as soon as I’d done that they flooded back again. What am I going to do about money? What’s going on with that guy I like? Did I have plans for tomorrow? What do I need to do for work tomorrow? Oh god work tomorrow. Did I put my headphones on charge? Did I take my meds? Whilst all the time thinking “WILL YOU JUST SHUT UP – I NEED TO SLEEP”.
At 3am I realised sleep clearly wasn’t happening and at 4am I completely gave up all hope of achieving any sleep.
The medication I take to control my HIV, ATRIPLA, is made up of three drugs Emtricitabine, Tenofovir and Efavirenz. Apparently Efavirenz is widely know to cause insomnia – I’ve never been the best sleeper, but I can’t imagine that this is really helping matters. Some people have suggested that I move to another drug combination that doesn’t include Efavirenz but these aren’t available in single pill from the NHS and I don’t know how well I’d cope with multiple pill treatment – plus I don’t really want to burn my bridge with ATRIPLA if I don’t have to.
It’s now 5am. I have to get up for work at 7:30. Do I try and sleep for that 150 minutes, or do I just get up and go into work early? Whatever I do, however, I can confidently say that my Thursday will be a complete write-off. I’ll be heavily reliant on bad instant coffee to keep me awake at work, but it won’t be proper awake, it will be Zombie Tom – lights are on, but nobody is at home.
I really envy people who, like my pets, can just put their head down and go to sleep straight away. That’s never something that’s worked for me, I’ve always found it hard to get to sleep and it’s just getting harder as the years and pills continue.
Here’s a quote from D.D. Barant that seems appropriate:
“I’ve got a bad case of the 3:00 am guilts – you know, when you lie in bed awake and replay all those things you didn’t do right? Because, as we all know, nothing solves insomnia like a nice warm glass of regret, depression and self-loathing.”
I hope you have a better Thursday than I’m going to.
Best wishes,
Tom
UKPositiveLad
Latest Blood Results – March 2013
G’day Lads and Lasses,
Yesterday I went to my local HIV Clinic at the lovely Queen Elizabeth Hospital Birmingham. I popped in to get the results from my routine blood-work I had done last week.
My consultant gave me my latest figures: My CD4 is up from 534 to 627 (yay) and my Viral Load remains undetectable (double yay).
Now for those of you who aren’t au fait with the terminology here are some a couple of quick explanations from aidsmap.com:
- T-cells (or T-lymphocytes) are white blood cells that play important roles in the immune system. There are two main types of T-cells. One type has molecules called CD4 on its surface; these ‘helper’ cells organise the immune system’s response to bacteria, fungi and viruses. The other T-cells, which have a molecule called CD8, destroy cells that are infected and produce antiviral substances.HIV is able to attach itself to the CD4 molecule, allowing the virus to enter and infect these cells. Even while a person with HIV feels well and has no symptoms, billions of CD4 cells are infected by HIV and are destroyed each day, and billions more CD4 cells are produced to replace them. Doctors use a test that ‘counts’ the number of CD4 cells in a cubic millimetre of blood. A normal CD4 count in a healthy, HIV-negative adult can vary but is usually between 600 and 1200 CD4 cells/mm3 (though it may be lower in some people).
- Viral load is the term used to describe the amount of HIV in your blood. The more HIV there is in your blood (and therefore the higher your viral load), then the faster your CD4 cell count will fall, and the greater your risk of becoming ill because of HIV. Viral load tests measure the amount of HIV’s genetic material in a blood sample. The results of a viral load test are described as the number of copies of HIV RNA in a millilitre of blood. But your doctor will normally just talk about your viral load as a number. For example, a viral load of 10,000 would be considered low; 100,000 would be considered high.
- All viral load tests have a cut-off point below which they cannot reliably detect HIV. This is called the limit of detection. Tests used most commonly in the UK have a lower limit of detection of either 40 or 50 copies/ml, but there are some very sensitive tests that can measure below 20 copies/ml. If your viral load is below 50, it is usually said to be undetectable. The aim of HIV treatment is to reach an undetectable viral load.But just because the level of HIV is too low to be measured doesn’t mean that HIV has disappeared completely from your body. It might still be present in the blood, but in amounts too low to be measured. Viral load tests only measure levels of HIV in the blood, which may be different to the viral load in other parts of your body, for example in your genital fluids, gut or lymph nodes.
The dietician is slightly concerned about my weight however, I used to weigh between 62 and 64kg (that’s 9st 10lb – 10st in old money) and now I weigh 56Kg (8st 11lb). So they’ve put me on a new diet – where essentially they want me to be eating all day long. Lots of things rich in sugar, fat, dairy and protein. Not sure how I’m going to afford that mind!
To combat the rising number of cold-sores I’ve been getting too my consultant has put me on a daily dose of Valaciclovir to combat those at the root cause, hopefully we can get that under control too. All in all a pretty productive trip to the hospital, all done for four months now!
Until tomorrow lovely people,
Tom
UKPositiveLad
My Latest Results
Happy Moist Wednesday to you all,
Yesterday I went to collect the results from my triannual (is that a word? three times a year anyway) HIV check up at the clinic. I’d been in the week before and had the full battery of tests – 8 vials of blood and a urine sample, along with a full standard STI (sexually transmitted infection) screening. It takes one week from the tests to get all the results, so in I popped after work.
It always surprises me how lovely the staff are, they always remember my name despite the hundreds, if not thousands, of people they see between my check-ups. My usual consultant wasn’t available, sunning himself in the tropics – alright for some, so I saw a different lady who had me laughing the entire time.
The long and short of it however is my Viral Load is holding at <39 (which means undetectable), and my CD4 was a respectable 532 (see chart below), my CD4 is a bit down from last time, but the doctor attributed that to my recent bout of flu. So that’s all good. The STI screening was clean as a whistle too – hardly surprising given my pretty quiet bedroom life of late.
I saw the dietician who told me that my cholesterol, kidney and liver functions were all fine – and quizzed me on how healthy my diet was. The physiotherapist moaned at me for not doing enough exercise, and the health advisor gave me a suitcase of condoms and lube.
On to the pharmacist we had a yearly medication review, we discussed my minor side-effects (occasional insomnia and crazy dreams) and decided that it was best to stick with the current medication regimen. I was offered a new home delivery service for my medication as it was suggested it would be more convenient for me, but then I’d have to wait in for the delivery (or else trek to the Post Office) and I have to come in every four months for my check-up anyway, so might as well collect them then.
I picked up my four month supply of ATRIPLA and headed home. At £626 per month (cost to the NHS) that meant I was carrying £2,504 of medication around. I felt like it should probably be handcuffed to me like in the movies! Thank goodness that it doesn’t cost me a penny on the NHS, not even a prescription charge. A lot of people complain about the NHS, and sure it does make mistakes but then what organisation doesn’t. We’re very lucky to have such an institution in our country – make the most of it whilst you can before the Tories dismantle it.
I hope you’re all well!
Sam
UKPositiveLad
Life+ the must have HIV app
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…
Life+ taps into the well established and incredibly useful MyHIV.org.uk website (managed by THT and funded by EJAF). This allows you to:
- 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)
Happy Mondays!
Sam
UKPositiveLad
Lastest blood results – cause for celebration
Hey Hey,
Just a short blog-post as I did a big rambling one yesterday. I went to the clinic today, which I wasn’t really looking forward to. They took 8 vials of blood from me (as per usual), made me pee in a pot (not easy), weighed me (61.3kg) and checked my blood pressure (122/71) and then gave me four vaccinations:
- Hep B (booster)
- Pneumonia
- Meningitis
- Tetanus/Polio/Diphtheria
After that was out of the way I sat down with my consultant and she took me through my results from last time. I’ve made some real progress (as you can see in the chart below), my Viral Load is now 39 (technically “undetectable”), and my CD4 has risen to 561 (the highest it’s ever been).
In just one year my Viral Load has dropped from 79,000 to 39, and my CD4 has risen from a low of 332 to a high of 561. Proof if proof were needed that Highly Active Antiretroviral Therapy (HAART) really does work.
After that was done I headed to the pharmacist and picked up a four month supply of ATRIPLA and made my way home.
Just that little bit of good news has really perked me up. I’m seeing my best mate on Thursday too for drinks, something to look forward to there as well.
Hope you all have a good evening,
Sam
UKPositiveLad
Fighting fit and feeling fine!
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…
Becoming comfortable with my meds…
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!
Treatment: My first month
I started a new bottle of Atripla at the weekend, which can only mean one thing: I’ve completed four weeks of Atripla, my HIV anti-viral medication.
Since day one of this blog and my Twitter account I’ve said that I’d always be open and honest about my life with HIV, I wouldn’t sugar coat it, nor would I make it out to be worse than it really is. I’d just put on paper (well blog) as I see it, warts, glitter and all.
It’s not been the easiest four weeks adjusting to Atripla, either phyiscally or emotionally.
Physical side effects have included dizziness, light headedness, slight weight loss and have made it nigh on impossible for me to get out of bed in the morning (I used to be so good at getting up!), and I even had to endure a whole body rash for a week – it didn’t itch or hurt, but I looked like a blotchy tomato person for an entire week, that was fun, thankfully it only lasted one week. The only effect I’m left with now is the inability to get up in the mornings – I just have to set more alarm clocks!
Emotionally, taking my huuuuge Atripla pill is a daily (or in my case nightly) reminder that I’m living with HIV and I will be for the rest of my life, it’s a tough pill to swallow - if you’ll pardon the pun. For the most part of my day I’m Sam the employee, Sam the son, Sam the boyfriend and I almost never have to think about HIV, but at 23:00 each night, when my reminder goes off on my phone, there it is flashing on the screen “Take Medication”. (Atripla has to be taken at the same time every night (within 10 minutes preferably) to be most effective, so alarms/reminders are essential to me – maybe one day I’ll be in enough of a routine that I won’t need them but for now I must live by my buzzer.) It doesn’t bother me too much, it’s just knowing it’s something I’ll never be able to escape.
Is it worth it? Of course it is! If I play by the rules, and take my pill every night, then soon:
- I’ll have an ‘undetectable’ (amount of virus in the blood is too small to show up on tests) viral load – which makes me healthier and makes me less of a risk to those who I have sex with, so little in fact that the guidelines have just been changed to stop prescribing PEP to people who have unprotected sex with someone who is who is ‘undetectable’ see here for more info.
- I’ll live until a ripe old age. People who start treatment in their mid-twenties (like me) and who are diagnosed early (like me) are expected to live until their late seventies now, as long as they stick to treatment protocols.
In the last four weeks alone my viral load (amount of virus in my blood stream) has dropped from 79,000 copies per ml, to a measely 352 copies per ml. To say my doctors are thrilled with my progress is an understatement, and so am I. They fully expect me to be undetectable within 3 months. I think I may have to set some champagne aside for that day.
For those of you charting your own progress with HIV, as the Apple adverts say: “There’s an app for that”. I found an application on the Apple iOS store called ‘PozTracker’ which allows you to record your blood results, changes to treatment etc, and it shows it all in a natty little graph. So to finish up, here’s my graph so far.
Take care, look after yourself!
Sam
UKPositiveLad
