LIVING WITH HIV
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Living with HIV
HIV is no longer the "death sentence" it was once thought to be, as medication has come a long way in 30 years. But how people cope with being diagnosed HIV positive, as well as with treatment, varies from person to person.
By properly managing your condition – taking your medication correctly and avoiding as much illness as possible – the professionals say you'll be able to live a normal and long life.
But what does this mean for you?
Being told you are HIV+ is still extremely scary for most people and dealing with what comes next holds so many issues it's hard to get your head around. You'll probably begin to question your future and start re-living your past. This is perfectly normal and it is natural for you to start thinking What if? and If only! Four Pillars, as well as many other organisations are here to support you if you need it. Other issues to consider include getting psychological support, which is offered by NHS Grampian.
It’s important to remember:
• Advances in HIV treatment means you can live a normal and long life
• It’s really important to go to a specialist HIV service to sort out your medical care
• Treatment can now be as simple as taking one or two pills, once a day
• You can still have a great sex life, with or without a condom, once your treatment is working properly and you attend regular (yearly) check-ups
• HIV positive parents can have HIV negative children
You might need to start treatment straight away, but only your HIV doctor can work this out for you. Sometimes Doctors can put you on treatment even if you are well, this is known as "treatment for prevention” The aim is to reduce your viral load to an undetectable amount which will then reduce the risk of you passing on HIV in the future. The benefits to you cannot be missed either, By reducing your viral load as early as possible reduces your chance of developing opportunistic illnesses, improving your health long term and giving you one less thing to worry about.
Who should I tell?
The simple answer is no-one. You do not have a legal obligation to disclose your status to anyone, including your GP.
However, if you are, deciding who to tell can be a difficult decision and it's important to think about how people may react to being told that you are HIV+. There is still a lot of stigma around the subject and even a loving family member or friend can be shocked by your news and react in a stereo-typical way. But that shouldn't stop you. Everyone is human and most people will understand and accept your HIV status once they understand you and it.
Education is the key to reducing stigma and getting better reactions from family and friends as well as colleagues and others.
Just remember that once you've told someone you can't un-tell them!
So before telling someone think:
• Why do I want to disclose my HIV status to this person?
• Are there any benefits for me to tell them?
• Are they good at listening and talking about emotional issues?
• How would I like them to react?
• What will I do if they don't react in the way I hope they do?
• Can I trust them not to tell anyone else?
Telling someone that you have HIV+ can be a good experience and will hopefully mean that you have someone to offer you support if you want/need it. But you have to be prepared for the different reactions.
Before disclosing to anyone it can be helpful to talk it over with your HIV specialist or with someone from Four Pillars.
HIV is a virus which attacks your immune system. In addition to anything the doctor can give you, a healthy diet and an active lifestyle are important to keep the immune system strong. This is not always as easy as it sounds. Even for someone not living with HIV! Start small, drink plenty of water and consider walking to the shops instead of driving or catching the bus. If you are up for it start up at the local gym, there are some great places now that support the individual needs of everyone and you are sure to find somewhere to fit in with your needs and lifestyle. Consider your eating habits, as much as we like to sit in front of the TV and eat chocolate and ice cream all night is it really something you need to do every week?
If you are diagnosed with HIV, you will have regular blood tests to monitor the progress of the HIV infection before starting treatment.
This involves monitoring the amount of virus in your blood (viral blood test) and the effect HIV is having on your immune system (CD4 count).
Treatment is usually recommended to begin when your CD4 cell count falls towards 350 or below, whether or not you have any symptoms. In some people with other medical conditions, treatment may be started at higher CD4 cell counts. In recent years prescription for prevention has been used for many people living with HIV. This means, as long as it does not affect your own health, you could be offered medication before your CD4 count reaches lower levels. The aim of this is usually towards people that are highly sexually active as reducing the viral load decreases the possibility of passing on the virus to others.
When to start treatment should be discussed with your doctor.
The aim of the treatment is to reduce the level of HIV in the blood, allow the immune system to repair itself and prevent any HIV-related illnesses.
If you are on HIV treatment, the level of the virus in your blood is generally very low and it is unlikely that you will pass HIV on to someone else.
If you have another condition
If you have also been diagnosed with hepatitis B or hepatitis C, it is recommended that you start treatment when your CD4 count falls below 500.
Treatment is recommended to begin at any CD4 count if you are on radiotherapy or chemotherapy that will suppress your immune system, or if you have been diagnosed with certain other illnesses, including:
HIV-related nephropathy (kidney disease)
HIV-related neurocognitive (brain) illnesses
HIV is treated with antiretrovirals (ARVs), these work by stopping the virus replicating in the body, allowing the immune system to repair itself and prevent further damage.
A combination of ARVs is used because HIV can quickly adapt and become resistant to one single medication. Patients tend to take three or more types of ARV medication. This is known as combination therapy or antiretroviral therapy (ART).
Some antiretroviral drugs have been combined into one pill, known as a "fixed dose combination". This means that the most common treatments for people just diagnosed with HIV involve taking just one or two pills a day.
Different combinations of ARVs work for different people so the medicine you take will be individual to your needs.
Once HIV treatment is started, you will probably need to take the medication for the rest of your life. For the treatment to be continuously effective, it will need to be taken regularly every day. Not taking ARVs regularly may cause the treatment to fail allowing the virus to build immunity and causing further complications in future treatments.
Many of the medicines used to treat HIV can interact with other medications prescribed by your GP or bought over-the-counter. These include herbal remedies, as well as recreational drugs.
Always check with your HIV clinic staff or your GP before taking any other medicines.
You will also be encouraged to take regular exercise, eat a healthy diet, stop smoking and have yearly flu jabs to minimise the risk of getting serious illnesses.
HIV is able to develop resistance to a single HIV drug very easily, but taking a combination of different drugs regularly makes this much less likely to happen. Most people with HIV take a combination of three antiretrovirals and it is vital that the medications are taken every day as recommended by your doctor.
For people living with HIV, taking effective antiretroviral therapy (where the HIV virus is "undetectable" in blood tests) will significantly reduce the risk of passing on HIV to others. It is extremely rare for a pregnant woman living with HIV to transmit it to their babies, provided they receive timely and effective antiretroviral therapy and medical care.
ARV treatment is available to prevent a pregnant woman from passing HIV to her child.
Without treatment, there is a 1 in 4 chance the baby becoming infected with HIV. With treatment, the risk is less than 1 in 100.
Advances in treatment mean there is no increased risk of passing the virus to the baby with a normal delivery. However, for some women, a caesarean section may still be recommended.
If you have HIV, do not breastfeed your baby (This is illegal) because the virus can be transmitted through breast milk, even if you are taking ART.
If you or your partner have HIV, speak to an HIV doctor as there are options for safely conceiving a child without putting either of you at risk of infection.
Missing a dose
HIV treatment only works if you take your pills regularly every day. Missing even a few doses will increase the risk of your treatment not working.
You will need to develop a daily routine to fit your treatment plan around your lifestyle.
HIV treatment can have side effects. If you get serious side effects (which is uncommon) you may need to try a different combination of ARVs.
Common side effects include:
Without treatment, the immune system will become severely damaged and life-threatening illnesses such as cancer and severe infections can occur. This is known as late-stage HIV infection or AIDS.
Under Scottish law it is a criminal offence to pass on or endanger someone with HIV.
There are only few cases of this happening but you must be aware of your responsibilities and keeping within the law
You are breaking the law if:
• You knew you had HIV and didn't reduce the risks
• You didn't follow the advice given by your doctor on preventing risk to others
• You understood how HIV is transmitted and didn't reduce the risks
• You had sex with someone who didn’t know you had HIV and didn't reduce the risks
• You had sex without a condom and didn't tell the person you are HIV+ and/or reduce the risks
• You transmitted HIV to that person, even if you think you reduced the risks but didn't tell them you were HIV+
The person does not have to contract HIV from you for the courts to prosecute. You can be charged with reckless endangerment, meaning you intentionally put that person at risk of HIV.
It is also important to remember is it illegal for an HIV+ mother to breast feed a baby. This is because despite medication it is not yet possible to stop the transmission of HIV through the mother’s milk. If you are considering children it is extremely important to talk everything through with your HIV specialist beforehand.
For more information on HIV & the law you can speak to your HIV specialist, local police officer or visit HIV Scotland http://www.hivscotland.com