Blog Archives
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.
-
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
It Starts With Me, what about you?
You may remember a week or so back I posted about a new HIV awareness campaign in England called ‘It Starts With Me’ – designed to educate people about HIV, how it’s spread, how it’s prevented and what they can do to fight HIV.
Well the campaign is really in full swing now, with events and awareness materials rolling out across England.
Yesterday I returned from a trip to Berlin with my friend Anthony to find a ‘It Starts With Me’ t-shirt waiting on my door step. So I popped it on and took a few snaps, you’ll probably see me at a few events up and down the country – including pride events wearing it, talking to people about their attitudes towards sexual health, testing and HIV.
Some quick HIV related facts from the It Starts With Me website:
- 1 in 4: The number of people with HIV in the UK aren’t aware that they have it
- 10 years: how much shorter your life could be if you delay testing
- 8 in 10: gay men get HIV from someone who doesn’t know they have it
- 25-29: the age group in which the most gay men test HIV positive
- 96%: Treatment for HIV can make you upto 96% less infectious to others
Please make sure to head over to the It Starts With Me website to find out more about HIV, and how YOU can stop it in its tracks.
Peace out!
Tom
UKPositiveLad
‘It Starts With Me’ – a new HIV campaign for England
As many of you who have been following my writings for some time now will know, I have frequently lambasted the UK Government, Department of Health and Health Protection Agency for failing to take any decisive action to curb the rising rate of HIV infections in the UK.
In recent years there’ve been numerous repetitive campaigns about cancer, stroke, mental health, alcohol, drugs, fruit & veg, exercise – even barbequed food, but nothing about HIV since the late 1980s. Well that changes this month.
24th April 2013 marks the launch of ‘It Starts With Me‘, a campaign created by The Terrence Higgins Trust and funded by HIV Prevention England (HPE), via the Department of Health, a campaign that will run (at least initially) for two years – until April 2015.
‘It Starts With Me’ is a campaign that will be delivered online, via the press, via posters/condom packs in venues and via local outreach teams. HPE will funding national and regional organisations to promote the campaign up and down England.
The campaign focuses on:
- Testing for HIV at least once every twelve months, and more frequently if they have taken a risk, or show symptoms of seroconversion illness.
- Taking the medication they need to stay fit and well, if they have been diagnosed with HIV.
- Protecting themselves during sex by using condoms and finding other ways to avoid risk.
- Participating in community action by finding a way to support the campaign and spread the word to their friends and contacts.
Make sure to check out www.startswithme.org.uk, the website for the campaign, and watch the short introductory video, which includes many interesting facts like 1 in 4 people in the UK with HIV don’t know that they have the virus, and that treatment is easier than ever and dramatically reduces the risk of you passing the virus onto anyone else.
You can find out more at www.startswithme.org.uk and a the campaign’s facebook and twitter pages.
It Starts With Me.
Tom
UKPositiveLad
Just Get Tested Already
Morning all,
On a daily basis I get maybe thirty or forty emails from people reading this column or people visiting my website. Some are asking for support, others asking questions about HIV, a few are even hate-mail (the crazies are everywhere) – and an alarming number telling me that they’ve never had a HIV and/or STI (Sexually Transmitted Infection) screening.
Of course I always handle these messages sensitively. I suggest that they should go and book themselves in for a full STI screening and even provide a link to the Terrence Higgins Trust website where they can pop in their
postcode and find a clinic near them. But the whole exchange often leaves me baffled and concerned. Many of these people are in their mid-to-late twenties – how they have got this far in life (presumably having sex along the way) and never having had a check up?
Is it simply a case of sticking their heads in the sand or is there something more going on here? Having spoken to some of them in more depth there’s definitely some ostrich like behaviour for sure, for some ignorance really is bliss, if you don’t know something is wrong then you don’t need to worry about it – but for others it’s a fear of the testing process itself, and this can only be due to lack of education around the topic.
Going for a STI screening really is not that big a deal. Honestly. I went for one only the other month (I go every six months – and so should you if you’re sexually active). Here’s what happened:
I arrived at the clinic at about 10am. I sat around watching Jeremy Kyle in the waiting room until I was called through by a doctor. They ask you a few simple questions:
Why’ve you come in today? “routine testing”,
Do you have any symptoms? “none”,
Any pre-existing conditions? “HIV-positive”.
After that I head back to the waiting room for a couple of minutes for a spot more Jezza (turns out he wasn’t the father). Then a nurse calls me through to one of the other rooms. She takes a couple of throat swabs (say “ahhhh”), a tiny swab from the end of my penis (it does pinch a little, but it doesn’t hurt), and a swab from my ass. Another nurse comes into to take a couple of vials of blood and then I’m given a little bottle to go put a urine sample in. I’m good to go. That’s it! takes about 45 minutes, one hour tops. They’ll text me any results in two weeks time.
(If I didn’t already know that I was HIV-Positive they would have also offered a HIV Rapid Test, which gives you a result in 15 minutes)
It’s incredibly important that each of us get regular STI screenings. Most sexual health charities recommend twice a year or more frequent if you’re more sexually active. Whilst you may not have any symptoms you may still carry any number of infections without even knowing it. I myself had absolutely none of the ‘flu-like’ symptoms often associated with HIV and only found out at one of my regular screenings.
Getting checked out doesn’t just mean that you’re looking after yourself, it means you’re showing respect and looking out for those who you sleep with – after all you’d hope anyone you slept with to have been checked recently, wouldn’t you?
So if you’ve never been checked out, or maybe it’s been far too long since your last test perhaps today’s good deed could be calling up your clinic and booking yourself in for a little MOT. Don’t know where your nearest one is – sorry, that’s no excuse. Head over to THT.org.uk and click ‘Sexual health’ to use their ‘Service Finder’ tool.
Take care,
Tom
UKPositiveLad
Last week’s Gaydio chat – now available to listen to online!
Ahoy-hoy,
Last week I was in Manchester from Thursday to Sunday. I attended a great event run by LGF, and got a chance to visit Chris & Emma in the Gaydio Studio!
It made a nice change from chatting with them on the phone! I spoke about my big disclosure, the ‘functional cure’ story concerning 14 patients in France, my appearance on BBC World News and the first birthday of rucomingout.com
As before you can download and listen to the show in MP3 by clicking HERE 
If you want me to appear on your show please don’t hesitate to get in touch using the contact page on this site.
Tom
UKPositiveLad
Student Pride 2013
It’s been a little while since I was a student, six years ago to be precise (oh I feel old), but I was honoured to be invited down to this year’s Student Pride 2013.
For a lot of attendees Student Pride will be the first ‘Pride’ event that they ever go to, so it’s important that the organisers get the weekend right, and that they have done.
There are multiple events, with a little something for everyone. For those that are old enough there are clubbing nights, with special performances from the likes of X-Factor’s Lucy Spraggan, Class A and Capital FM’s James Barr. During the day there are job fairs, theatre productions, live music and debates.
There will also be sexual health advice and FREE rapid HIV testing available courtesy the good people from ’56 Dean Street’. Make sure to stop by and check your status, it only takes a few minutes and could save your life and the lives of anyone you play with.
Student Pride 2013 runs from 1st – 3rd March 2013 in Brighton on the South Coast of England. If you’re a student and 16 years ago or more you can GET YOUR TICKETS HERE!
See you there!
Sam
UKPositiveLad
March issue of ATTITUDE Magazine – OUT NOW
Greetings to you all out there in cyber-space,
Just a quick note to let you know that the March 2013 issue of ATTITUDE Magazine is out now, and wow is it a tasty one! This month is is ATTITUDE’s famed ‘Naked Issue’ – featuring toned torsos and buttocks from the likes of Shayne Ward and Colin Gentry.
But fear not dear reader it’s not all style and no substance, this Naked Issue ATTITUDE have teamed up with NAT (National AIDS Trust) to talk about safer sex, condom use, HIV and the importance of getting tested – a must read.
Oh, and don’t forget my column – this month I talk about how I’m having ups and downs with my medication but how I remain thankful that it’s now, and not 30 years ago. Find out why…
Lots of love,
Sam
UKPositiveLad
Gonorrhea – What you need to know…
Hello? Is this thing on? Good…
One of the less likely looking prostitutes…
Today I’m talking about Gonorrhea, I’m sure you’ve all heard about it at some point or other, it’s commonly known as “the clap”.
Gonorrhea is one of the most common sexually transmitted sexually transmitted infections (STIs) but that doesn’t mean it isn’t something that should be taken seriously.
First up let’s look at the symptoms, (I hope you’ve not just eaten):
Guys
- A white-ish/green-ish discharge from your penis and/or arse
- Anal discomfort
- A burning sensation when you pee
- Inflamed foreskin
- Painful testicles and/or prostate gland
Girls
- A white-ish/green-ish thick discharge from your vagina and/or arse
- Anal discomfort
- A burning sensation when you pee
- Painful abdominal region
- Bleeding between periods
But just because you don’t have symptoms doesn’t mean you don’t have it, 10% of men and 50% of women are asymptomatic (show no symptoms at all).
How is Gonorrhea passed on?
- Unprotected anal or vaginal fucking
- Unprotected oral sex (including rimming, and going down on a girl)
- Sharing sex toys (without washing thoroughly or using a fresh condom each time)
- Fingering multiple partners (without washing thoroughly between each)
What happens if I don’t get it treated?
- In girls it can lead to Pelvic Inflammatory Disease
Which can lead to fever, vomiting, abscesses and infertility amongst other things. - In guys it can lead to a very serious and painful infection of the testicles.
How do I get tested?
- The most common methods of testing are a penile/anal/vaginal swab. A urine sample may also be taken.
What’s the treatment?
- Unlike most bacterial infections which are treated with oral antibiotics in the form of pills, Gonorrhea is treated by an injection of strong antibiotics directly into one of your ass cheeks.
Hopefully you’re all sensible people out there and going for routine STI screenings at your local GUM or Sexual Health Clinic, but if you haven’t been for a while maybe it’s time you popped down and got checked out. After all it’s not just Gonorrhea that’s out there is it? Don’t forget about chlamydia, LGV, syphilis, hepatitis (A, B and C) and of course HIV. If any of your results come back positive don’t forget to inform any recent sexual partners, if you don’t feel comfortable doing this most clinics will offer to do this for you anonymously.
Your health is in your hands, but you can only look after yourself if you know all the facts. If you need to find a clinic near you check out: www.tht.org.uk/sexual-health/Service-finder
Have a great weekend,
Sam
UKPositiveLad
National HIV Testing Week
Happy Friday to you lovely people,
Today, Friday 23rd November 2012 marks the start of National HIV Testing Week here in England. This is the first time such a large initiative has been run to encourage the people of England to go out and get tested.
National HIV Testing Week runs from Friday 23rd November to Friday 30th November, finishing just before World AIDS Day on Saturday 1st December.
The initiative is being run by the Terrence Higgins Trust, the UK’s largest HIV charity (who are celebrating their 30th birthday this year) and supported by a whole host of other organisations such as BASHH, BHIVA and the HPA.
Many people are put off going for HIV test by a fear of needles or having blood taken, but the fact is most clinics these days use rapid testing known as FastTest which involves a simple prick on your finger and you’ll get the results within minutes.
Annie Lennox was interviewed this week for ITV News about her views on HIV and testing in the UK, she said:
“We’re still struggling with the issue of stigma, fear and ignorance, There are many people that now, actually need to get tested. Friday 23rd at the end of the is the begining of National Testing week here in the country and we’ll be encouraging people to go get tested and find out their status… Go and get tested, find out your status, then you can know what you’re dealing with.” You can watch the full interview here: http://vimeo.com/53871991
Boris Johnson, The Mayor of London said:
“London is home to almost half of all people living with HIV in the UK, but a quarter of them are unaware that they carry the virus. It is vital that people who might be at risk get tested, not only to reduce the risk of transmission to others, but to ensure that they get the life-saving treatments that are available”
You can find out what’s happening for National HIV Testing Week in your area, and where you can go to get tested by visiting the THT Clinic Finder page, or the National HIV Test Week facebook page.
Even if you’ve been tested recently, or are HIV+ why not help promote National HIV Testing week via your facebook or Twitter using #HIVTestingWeek and encourage your friends to go and get tested. The sooner you know, the sooner you can take control of your health and protect those around you.
Enjoy your Friday and weekend!
Lots of Love,
Sam
UKPositiveLad
Myths about HIV
In order to fight the stigma that surrounds HIV people first need to understand HIV – only through understanding can people begin to accept something.
There are a lot of stories and myths circulating out there and people have a tendency to believe what they read, which is even more dangerous in the age of the internet, where an uninformed decision can be taken as fact. So I’ve compiled a short list of the myths I’ve come across in the hope that I can dispel them. Please share this article – via twitter, via facebook, via carrier pigeon – and let’s get the truth out there.
- I can get HIV from touching a HIV+ person.
No – you cannot. You also cannot get HIV by: kissing a HIV+, using the same toilet seat, sharing cutlery or cups, or having a HIV+ sneeze/cough on you. HIV is spread via blood, semen, vaginal fluid and breast milk.
. - I can get HIV from animals or insects
No – you cannot. HIV stands for Human Immunodefficiency Virus and is only carried by humans, you cannot get HIV from an animal or insect bite – even mosquitoes.
. - HIV is a gay disease
Wrong again. HIV doesn’t discriminate, it infects anyone regardless of gender, sexual orientation, race or religion. In fact in 2010 out of 69,400 people (confirmed diagnosed cases) living with HIV in the UK only 29,800 (which is 42.9%) were gay/bisexual men, which leaves 57.1% of the diagnoses firmly in the heterosexual camp*.
. - You can tell when someone has HIV.
Unless you’re a trained virologist with a blood sample you cannot tell whether someone has HIV. There aren’t any visable signs, many people (like myself) won’t experience any symptoms of infection. The only way to know for sure is to ask them, and that’s only as good as their last test results.
. - HIV and AIDS are two different diseases.
Incorrect. HIV is the culprit in both cases. HIV is a virus. AIDS is a condition. When someone is infected with HIV they are said to be HIV+ (or HIV Positive). AIDS (Acquired Immune Defficency Syndrome) occurs when a person’s immune system (or CD4 count) drops below a certain level, and it it is easier for opportune infections to take hold. A person suffering from AIDS can come out of AIDS with proper treatment and care. Many organisations, especially in the UK, no longer use the term AIDS but choose to use ‘Late stage HIV infection’ or ‘Advanced HIV infection’.
If you’ve heard of another myth you think should be busted on my blog, please leave a comment, tweet me, or email me and I’ll put it up here.
Ciao for now,
Sam
UKPositiveLad
*Figures from the Health Protection Agency Report: HIV in the United Kingdom: 2011 Report (http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317131685847)