The Medication Arrives
It has been a while since I blogged properly about my HIV status but if you’ve been reading the “HIV & Me” section of the blog, you will know that over the course of the year my CD4 has fallen and my VL has increased, quite dramatically. This led to the decision back in September to start the ball rolling in my taking of HIV medication.
As part of this process, I also transferred my care from Middlesbrough James Cook hospital back down to York where I live. I figure that it would be better having the clinic on my door step in order to attend the regular follow up appointments that starting medication means you have. Also it meant that should I experience any problems, I could walk around to the clinic rather than trekking an hour north by train.
The clinic at York is a well respected one, with the head consultants here being recognised the world over as leaders in their field. My consultant now is a chap who is a fellow of BHIVA (British HIV Association); a member of National Infectious Diseases & Microbiology Speciality Group; Fellow of the British Association for Sexual Health and HIV as well as being a Professor of Medicine at Hull York Medical School (HYMS), and Honorary Consultant Physician in GU/HIV Medicine at York Hospitals Foundation Trust. So as you can see, he’s a very well respected consultant indeed.
I am in now doubt that I am indeed in very safe hands when it comes to my long term HIV care and treatment.
1pm Tuesday 20th.
Unfortunately, it hasn’t gotten off to a great start. I was prescribed by the clinic two months worth of medication, Truvada and Sustiva, to be delivered by Home Delivery today, Tuesday 20th November. When I called the Home delivery people to try and find out a more specific delivery time, I was told that they didn’t have my script there, only the registration form. What!? I had taken a week off work especially to start the medication in the hope that any side effects would be more manageable this way, than trying to work 14 hour days with them. I immediately contacted the clinic to chase up the script, only to be told that the script had been sent off to them on the 15th November. I explained that I really need to start the medication today, as I have taken time off work etc. They told me to leave it with them, and they would chase the delivery people up and call me back.
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2.30pm Tuesday 20th
I’ve just this moment had a phone call from the clinic, apparently the HD people never received the fax with the script on it, and as such they say the quickest they can deliver to me is tomorrow. It’s all because the Truvada and Sustiva come from a pharmacy in Featherstone, some fair distance from York. I have asked if York Hospital stock the medication, and if so could I not just collect it from them as it is only a 5 minute walk from my house. They’re looking into it but won’t know until later as everyone is in a meeting.
I understand that mistakes happen, after all we are only human. But it doesn’t fill me with confidence in the system when medication can simply be “forgotten” about. What would have happened if I was due a re-supply of medication today, if I was down to my last pills. If York doesn’t stock the drugs, I would have to miss a dose and wait until the home delivery. Truly utterly disturbing and worrying when you’re talking about medication that is time critical, life saving, and whereby missing a dose runs the risk of resistance.
Mistakes happen, but in cases like this, you really can’t afford to make them.
It’s because of this that I shall be speaking to my consultant to come off Home delivery. I would also like to think that a major hospital such as York did indeed stock this medication. If Featherstone does, a tiny town in South Yorkshire, it is outrageous that York does not.
As someone who is just starting out on the rest of their life on medication this entire situation has filled my mind with doubt about the system. They preach to us about the importance of taking the medication, and yet the agencies involved can’t even get the medication to you in time to take it.
Fingers crossed they come up with a solution and fast. I would like to think that I could collect the medication from York Pharmacy this afternoon, or someone at Home Delivery in Featherstone will jump in their car, and drive it up to me. Delivery tomorrow just isn’t good enough. It means that I lose two of the 7 days that I had set aside to get over the side effects and adjust to the medication. I am due back at work on Wednesday. If I am still suffering with side effects, I am unable to work. No work means no wages; no wages means I can’t pay my rent. No rent means I get evicted. It is easy to see how people end up in the shit, simply as a result of other peoples foul ups.
It is just not acceptable.
3.40pm Tuesday 20th
Another call from the clinic, it appears that the pharmacy in York does have as a single months supply of the medication in, and they’re happy to give it to me. I am now awaiting a new script from the HIV clinic, and then I will be on my way around to collect my medication.
This is great news at long last.
Of course, one months supply isn’t the two that was initially scripted, so I shall need to get a repeat script written up and sent off as soon as possible to ensure that there are no more foul ups like this. I don’t want to end up in the sort of position I described earlier, where I am on medication but running low.
4pm Tuesday 20th
Final phone call from the clinic, they’ve prepared me an out patients script, and if I can collect it from them, the hospital will dispense me a months worth to get me going. Only problem, the hospital pharmacy closes at 4.45pm. Eek! I left the house immediately and make my way across town, 1.5 miles to the clinic. Upon arrival, the receptionist knows nothing about it. He goes of to check, each moment the clock ticking by, I’m aware that the pharmacy closes in 20 mins… and it’s another mile and a half away. Finally he returns, explaining that they’re not sure what paperwork I will need. I suggest taking the entire lot, and then bringing back what the hospital don’t need. He looks at me, aware of the medication is as it says on the top “HIV Prescription” and agrees. Handing me a whole stack of my file, I thank him, turn, and run out of the door, up to the hospital.
About half way there, the skies open… and I mean monsoon style. I got soaked through. Even my boxers were wet by the time I arrived at the pharmacy. I handed my prescription over, and thankfully for the first time that day, they knew what was going on. She explained that they knew the story, they were apologetic for the cock ups, and handed me over the meds.
A months supply of Truvada and Sustiva, plus a couple of weeks supply of anti nausea and sickness pills tool.
Back home now, clothes in the wash and a cuppa on the go. I’ve got the delightful Alex Kage and his porn-star friend Nick Wilson coming around for a short while, then later on tonight it’s time to take the first step in the rest of my life.
A life of HIV medication. I intend to do a video diary of it, so keep tuned for that.
This post was written before I’d taken my medication, but uploaded the next day. I’ll be bogging about how taking the medication is going in the coming days.
Good luck. I’m surprised that you need to take time off and additional meds for side effects. I never had noticeable side effects but I did have two reactions.
First, years ago a med that they don’t really prescribe anymore shot my triglycerides through the roof to over 800 (150 or less is normal) and caused pancreatitis which is very, very painful and is basically treated by IV fluids and NO eating for 10 days and you must be in the hospital during the treatment.
Last year I went on truvada and in 25 days I had renal (kidney) failure. I was lucky because I felt fine but had gone to the hospital for something else and routine blood work found the problem. My kidney function was down to 18% but luckily, stopping the med and flushing with IV fluids had me out of danger in a few days but it took almost 9 months for my kidney function to completely recover. About a week after I was diagnosed, a major story was released stating that up to 34% of Truvada used experienced kidney failure.
Posted on November 21st, 2012 at 19:32 | QuoteJust as well the NHS is funded by the taxpayer to service the consequences of your descision to have bb sex with everyone and anyone, lucky the UK is not like the US where you generally have to pay your own way.
Posted on November 21st, 2012 at 23:01 | QuoteI am told Sutstiva gives wild vivid dreams. I am on Truvada, Reyataz, and Norvir. You may want to check out Poz.com. I found the forum sections very helpful. Here is the link to side effects and it is searchable. You don’t have to register unless you want to post. http://forums.poz.com/index.php?board=4.0
Posted on November 22nd, 2012 at 20:35 | QuoteHi Josh,
I am a fan from Brazil and also a researcher.
I wonder if your consultant requested genotyping/sequencing before you started meds…
For 1st line treatment (naive patients), usually, genotyping isn’t standard protocol, depending on where you live (not sure about UK, but usually atripla/truvada+sustiva is the most used first combination for those with no contraindications with no genotyping requested, in Brazil the healthcare system still uses lamivudine instead of emtricitabine for most of the naive patients with no genotyping requested).
But if you disclose your sexual behavior to the consultant and if you mention that you may have had unprotected sex with other hiv+ patients who already receive antiretroviral treatment, he might consider requesting genotyping even before you start your first line, because the chances of having viruses with different resistence are higher. Again, I don’t know if genotyping is standard for naive patients in the UK.
I see you are very aware and most likely this is nothing new, I just wanted to highlight the importance of being completely open with the consultants (as I saw your efforts to try to make people aware about the treatment burden etc…) – it may lead to a different approach –> in this case, it could prevent one from receiving medication that may not work – which could be troublesome, considering that the treatment only starts when it is already necessary to reduce VL and increase CD4.
I’m not sure my English is good enough to make my point, sorry for that.
Kind regards from Brazil…
Posted on November 22nd, 2012 at 20:36 | QuoteIt is one thing writing a no holds barred ‘front line’ report on your sex life, which to be fair, is extreme in many peoples eyes. But another to write so candidly about such a touchy subject and such a personal thing as an incurable disease that you have to deal with. It is incredibly brave and very important. No matter what one may think about your choices and practices, not a soul can question your integrity and honesty. I think that many people will get an insight into the reality of the situation that will surprise, comfort, shock and provoke their thoughts and emotions.
Posted on November 27th, 2012 at 12:24 | QuoteYou have stated so many times that you accepted the risk, and indeed the inevitability of contracting this, and obviously spent plenty of time reading and conversing on the situation and this is going to come through in your future posts about it.
I think you have done a very brave thing and I really hope you get plenty of support and any help you need.
Take care of yourself Josh and best of luck to you.
Hello there, thank you for your comments. In answer to your question, genotype testing is standard procedure here before starting on HIV medication in order to determine if you have any resistance issues. Even in people who are medication naive.
My genome results showed i had partial resistance to PIs (Protease Inhibitors), as such I was started on Truvada and Sustiva, once I can demonstrate that I can manage the side effects of the Sustiva, then I will be switched onto Atripla. If I am unable to manage the Sustiva, then they will probably switch me onto a different NNRTI (Non-Nucleuside Reverse Transcriptase Inhibitors).
You are quite right though that despite the side effects, Sustiva is the preferred NNRTI for first line drug naive patients, as it is so effective at what it does.
Posted on November 27th, 2012 at 14:11 | QuoteI totally agree. I am very fortunate that I live in a country which recognises that life saving treatment should be free at the point of issue for all. But before you start mouthing off, consider this. I have paid my tax all my life, and never needed any state assistance before. You say that the system is funded by the taxpayer and this is true to a degree (I am one of those said tax payers – and always will be because you cant go off on the long term sick with HIV in the UK), however the BULK of NHS funding comes from them selling their services to other nations in the world. So actually, the NHS whores its self out to other countries, offering their expertise and treatment to other countries, and that in turn provides the bulk of the funding for treatment of UK residents. I say UK residents because as far as HIV is concerned, you don’t even need to be a tax payer to get free treatment in England.
Posted on November 27th, 2012 at 14:22 | QuoteGlad to see the wild January 2011 night at AIDS central, the Fort, and Pig Pit, paid off.
Those places have now been shut down because of fears that a super resistant strain has come into existence, punters have been vetted, and many have disappeared from the public sexual and social domain, being held in quarantine. The authorities are trying to prevent the story from coming out fearful of an epidemic panic. Could be that you’ve got one of these super infections?
I don’t think it’s very honourable, that you dip into std town London, and then consequently back up North, put your arse out, like a viral petri-dish, to naive young Yorkshire lads, putting them at risk, knowing full well, you are highly infectious.
It’s alright being a cum hungry bare slut, but do gauge the risks for young lads who may not be so clued up, promising them you’re “clean right” when you full well know you’re diseased.
Not saying this to insult you, or to stop you from BBing altogether , but being a bit more cautious for the well being of those who are younger and really don’t need their life ruined for one stupid moment of having been lured into fucking a random hole.
Hope the meds kick in soon, so that your viral load won’t infect another 1000 other guys. Although I’m sure you’re proud of that accomplishment. Perhaps time to reflect on your past shenanigans and develop a moral conscience.
just my2pence, babe.
Posted on December 23rd, 2012 at 18:05 | QuoteI urge you to read the blog properly and not just selective postings.
You quote a phrase from a post I made many years ago, long before I was HIV+ and use it as a phrase that I have said recently – you’re wrong.
As for you saying that I am infecting others, again, I suggest you read the blog in its entirety – for I have consistently said that I do not gift, I do not stealth, and I ALWAYS disclose my status. In fact, 99% of the people I fuck bareback with since my HIV diagnosis are themselves HIV+, so what exactly are you harping on about with regards me “infecting another 1000 people”… I’ve yet to infect ONE person, let alone 1000!
I would suggest you do your research fully and totally before voicing a misguided “opinion” bordering on slander.
Regards,
Josh
Posted on December 29th, 2012 at 02:30 | QuoteCovering all your bases right.? From the chronology of your blog, I have gathered that you have indeed engaged in activities that could be deemed judicially punishable by law : putting at risk others with an infection of a lethal virus, and being aware of being infectious. Before you start back pedalling, better edit your blog, to make sure you really wipe out all the incriminating evidence. Coz you have been sloppy, even in that respect.
Posted on January 2nd, 2013 at 16:41 | QuoteThe comment below has been edited by me, Josh Landale, because the poster knows me personally, and felt it prudent to join in the recent shit storm. So much so, that he felt it needy to reveal details of my past AND my real name. Naturally this is wholly unacceptable, and I took steps to prevent this from being published, but I felt it right that you see the level of hatred that I am up against, merely for being honest and open about the sex I have – not for infecting others, not for lying or stealthing, but just for talking openly about bareback sex.
You may find it interesting to know, that the person who wrote this comment, thanks to his email and IP address which are captured for ALL comments posted – is Whitbylad… you may recognise that name from one of my videos. Seems that barebackers themselves (when we first met in 2010, he fucked me bareback in a cottage, no questions asked – thankfully for him, I was HIV NEGATIVE at the time) are getting worked up over my honesty. The original comment is below, in bold.
To be honest people like you deserve to be hiv+ not being funny but you have little regaurd for anyone but yourself.
And before you say anything i know who you are Mr ***** and i know what you have done in the past HIV is a horrific thing to have and i have looked after many in the end stages these people are innocent and do not realise how evil people like you can be so i have to say it serves you right! hope i’m on of the team that is involved in your care towards the end
Posted on January 9th, 2013 at 23:28 | QuoteIf even people that know you, call you out, and reveal what a despicable person you are, then good on them – you must be a real nasty piece of work. And you are not going to censor them with your vain little threats, because you haven’t got a leg to stand on. If you as much as threaten Whitbylad for any reason at all, I have a huge amount of friends who will intercept and step in to defend him. Let’s see if you’re still comfortable working where you do, living where you do. You might end up as a refugee in London by force.
Whitby lad can take you to court for attempted manslaughter, so it is good that you brought up that little history you had with him, and that you exposed him to your AIDS virus – which you had since 2009 at least. A sexual heath worker who works in the hospital where you got checked has disclosed this information to me. You are going down, poz boi. Karma catching up with you at last.
Posted on January 10th, 2013 at 15:28 | Quote@raunchero 123
Haha best fucking thing i’ve read all my life.
If someone leaked anything about my medical notes, I can take them, you and the NHS to court – not you taking me to court.
You don’t know what you’re talking about. I was diagnosed HIV+ Sept 21st, 2011. In 2009 – I was most definitely HIV negative. So WhitbyLad, if he has been saying to the contrary, is slandering me, and it is ME who will take HIM to court.
Get your facts straight before you start mouthing off.
Posted on January 10th, 2013 at 18:26 | QuoteLook luvvie, we all know, you’ve been pozzed way before 2011.
Either you publish proof to the contrary on your blog, or we can all assume that in fact you have been poz, a long, long time and have infected a great amount of people. I’d say you’re a covert gift giver – someone who enjoys breeding the virus into others, in particular young naive lads.
AS soon as court is involved, you know that you’re gonna be the one, who will end up with the worst repercussions of all. Also The Sun will have a field day with this sort of stuff.
Posted on January 10th, 2013 at 20:37 | QuoteJosh, I think its brave of you to tell people on here as it is your blog. If people do not like what they are reading they do not need to log on as they make an open judgement to open this up.
Whilst it is none of my business if you are HIV Positive or Negative unless I was to dump one in you, I think you have an excellent website that advises people of your health and being. Keep this up you show true commitment to being honest and open.
Keith
Posted on January 20th, 2013 at 19:50 | Quote