HIV/AIDS Awareness. A father’s choice.

Posts Tagged ‘treatment’

We are sharing 25 things you should know about HIV (and probably don’t) over 25 days. Today is #5.  These 25 things will impact what you do and the moves you will make.

“It is always your next move.” ~Napolean Hill

#5: HIV doesn’t just affect your immune system            

From the day you are infected with HIV, changes are happening in your body. We talk a lot about the changes in your immune system, but other things are happening as well.

Some of the changes are a result of the HIV infection and some are an unintended result of the treatment. Regardless of how they came about, issues that we might associate with aging like diabetes (high blood sugar), high cholesterol and triglycerides, and fat redistribution can affect those who are HIV positive.

Lipodystrophy, also called fat redistribution syndrome is the name of this group of symptoms. It is known for its changes in your body shape and in your metabolism.

Your body shape may change by the accumulation and/or loss of fat, which can affect your appearance. Metabolic changes may include increased resistance to insulin and those abnormally high levels of blood cholesterol and triglycerides. You may get one or more of these conditions if you are HIV positive.

Why is this important to you?

Doctors aren’t really sure why those who are HIV positive develop lipodystrophy, but they think it may be related to antiretroviral medications you take to control your HIV. It may also have something to do with your age, overall health, and how long you have been HIV positive.

But they are sure that you have a plenty of choices you can make each day that can improve the effects of lipodystrophy on your body.  A single choice that you make can often control more than one symptom.

These are long term conditions that have a progressive effect on your overall health.

How does this affect your path?

You are faced with choices every day and you can make healthy choices that can improve your symptoms of lipodystrophy. These include eating a healthy diet rich in fiber and “good fats” like Omega 3 and a daily dose of exercise that includes some use of resistance (weight training) and aerobic exercises.

Along with some treatments prescribed by your doctor, you have the power to make a real impact in this aspect of HIV and how it affects your life. If you have your viral load under control, you may as well look good while you are feeling good.

“He who controls others may be powerful, but he who has mastered himself is mightier still.”~ Lao Tzu

The power is yours. What path will you choose?

To read all of the 25 Things You Should Know About HIV (And Probably Don’t), please click on Kellys Blog to read each one of them as they are released. Or enter your name and email address in the boxes in the right column of this page. We will send you a complete copy of all 25 Things.

For more information on Lipodystrophy and other HIV related conditions, please check out our Info Center.

We are sharing 25 things you should know about HIV (and probably don’t) over 25 days. Today in Day #3.  We have identified these 25 things that you should know because they impact your actions and the path that you take..

“Nobody trips over mountains.  It is the small pebble that causes you to stumble.  Pass all the pebbles in your path and you will find you have crossed the mountain.”  ~Unknown

Day #3: HIV treatment is a lot more than just popping a couple of pills.

Today we are going to talk a bit more about the fact that people no longer think that HIV is a big deal. Even Oprah got caught last week saying, “You look at people like Magic Johnson and you realize that you can live a healthy, happy, long life” with HIV.  Sure you can Oprah, but there are a few facts that step in the way.

As Oprah’s guest Bridget pointed out to her… who wants to take pills twice a day for the rest of your life? Especially when the side effects of some of them can be wicked?

Those antiretroviral drugs that can make such a difference in living longer and getting sick less often (when you are HIV positive) are not something to be treated lightly. Doctors say that you have to remember to take your HIV medications as prescribed 95% of the time for them to be effective.

If you don’t, you risk that your HIV virus will mutate into something that is no longer responding to your medication. In short, your viral load will go up and your CD4 count will go down. More virus and less immune system.

Why is this important to you?

Getting treated for HIV means a lifetime of doctors, tests, and uncertainty. Even if you don’t feel sick.

When you are HIV positive, you will always be checking and rechecking on your health. During those first few years after you are infected, you probably won’t have any symptoms or require medication. But you will need to be checked every three months for a change in your health status.

I am not saying you can’t live a happy, healthy and long life with HIV. But do you want to live with that stress and uncertainty? Certainly this is a whole lot more than just popping a couple of pills.

When you do start to get sick from HIV, your viral load is up and your CD4 count is down. It will be time to start your antiretroviral drugs. Known as HARRT, this treatment regimen can be tough on your body with common side effects known as the big three: nausea, fatigue, and diarrhea.

You aren’t faced with a lot of choices here. Take the drugs 95% of the time so that they are effective (and save your life) but perhaps feel sick when take them.  Some meds must be taken several times a day at specific times and you may need to change what and when you eat, what you drink, and even what you do.

How does this affect your path?

Taking risks and exposing yourself to HIV is a choice that you make. Please remember that choice may be taking away a whole lot of other choices for the rest of your life.

“Some choices we live not only once but a thousand times over, remembering them for the rest of our lives.”~ Richard Bach

The power is yours. What path will you choose?

We are sharing 25 things you should know about HIV (and probably don’t) over 25 days. Today in Day #2.  We have identified these 25 things that you should know because they impact your actions and what path you take.

One more time with a favorite quote of mine: “There’s a difference between knowing the path and walking the path.” ~Morpheus. (Any Matrix lovers out there?)

Day #2: HIV is NOT a chronic manageable disease for everyone.

We used to think that HIV infection was a death sentence because we saw the images of some really sick people in the media. Most of us probably knew someone or heard of someone who got sick and died from AIDS.

Now lots of people think that HIV is no big deal. We have a few magic bullet pills to take each day that make HIV no longer a threat in our life. Get infected? So what? I can just take the antiretrovirals and be okay…

But unfortunately, that is just not true and this belief may be leading people to engage is some very risky behaviors because they don’t know the real consequences.

Why is this important to you?

Let’s get real here. HIV is probably manageable but certainly not cured by medication. There are no magic bullets here.

You may not know that HIV meds don’t eliminate all the virus from your body. What they do is merely reduce levels of the virus to undetectable levels, or less than 75 copies per milliliter of blood. Now that is enough to keep them from inflicting major damage on your immune system. But, you have about 5200 milliliters of blood in your body or around 400,000 copies of the virus hanging around.

And those 400,000 copies can still do some do some harm because they can mutate and cause drug resistance. They are also causing an inflammation response in your body that impacts many of your major organs including your brain.

You don’t have to feel or look sick for HIV to continue its march inside your body that has long term effects.

How does this affect your path?

Taking risks and exposing yourself to HIV means a lifetime battle against the virus. No vacations, no time off for good behavior.

What you can manage about HIV is your treatment program, your overall health, and your lifestyle. You can reduce complications and drug resistance by following the plan you develop with your doctor. You can help control the impact of your side effects by working with your doctor and let him know what you are experiencing.

What you can’t manage about HIV is that it is an invader that seeks to wreak havoc on your body and at best, you can expect a draw in your ongoing battle. There is never a total victory – yet.

 “In every battle there comes a time when both sides consider themselves beaten, then he who continues the attack wins.”  ~Ulysses S. Grant

Do you really want to put yourself in this war?

The power is yours. What path will you choose?

“Federal officials talk of the need to “re-energize” and seek “momentum” in the fight against AIDS.”

I read those words yesterday in an article on CNN called “Can America regain ‘momentum’ in fight against AIDS?” How can it be that we have lost momentum in our fight against HIV? I have been reading more troubling information in the past year about how most of us no longer consider HIV/AIDS to be a major health crisis. And now I am reading this:

“The rate of new HIV infection in the U.S. is increasing among only one risk group: gay, bisexual, and other men who have sex with men,” said Jonathan Mermin, director of the Centers for Disease Control and Prevention’s Division of HIV/AIDS Prevention. (CNN)

Are we going to allow another generation to experience the pain of the past?

Anytime we have a “re” word like regain, recommit, re-energize or regroup we are repeating steps that have already been taken. The prefix “re” actually means back to the original place. It is clear we must take steps everyday to keep the word out there that while HIV may not longer be a death sentence, it is a life sentence.

Certainly nothing in your life will ever be the same once you have a positive diagnosis. It is a life of being on guard against HIV and experiencing a new reality of testing and treatment decisions. Why surrender control of your life over to HIV? There are no “re” words for living with HIV. No redo, regain, or relive. You can’t go back.

One thing that doesn’t require any re-energizing or regaining or regrouping is the HIV virus. It remains as destructive and challenging as it was the first day it was identified. The only difference is that now we have treatments that can keep it at bay for a period of time and in some cases, a long period of time. But it is never defeated and treatments are never without cost.

Today is National Gay Men’s HIV/AIDS Awareness Day. Throughout the day today,we will be sharing on Twitter and Facebook some of the great articles, info and stories that are being written for this day. Please send at least one of them to your friends, family, and any one else who is at risk for HIV infection.

FXWHUZE4J63R

This morning I was reading the Huffington Post blog by Susan Smith Ellis, the CEO of (RED) – the HIV/AIDS organization founded by Bono and Bobby Shriver. (RED) is not a charity. It’s an economic initiative that has become its own brand, and it acts as an agency of sorts, forging partnerships with other brands (Apple, Converse, Motorola, Gap and Hallmark, just to name a few) that sell products/services directly to consumers.

Here is a link to the post: http://www.huffingtonpost.com/susan-smith-ellis/hivaids-medicine-is-only_b_674033.html

Susan makes a great point that HIV medicine is only one piece of the puzzle.  She notes that successful treatment for HIV/AIDS requires education, care, support, food and nutrition, as well as medication.  And she uses the example that with food and nutritional support, the antiretroviral drugs taken to treat HIV/AIDS are likely to be significantly more effective. And programs to provide treatment and care go hand in hand with prevention.

I couldn’t agree more.

Over the past several months, my team and I at MyHIVAIDSAwareness.com have been talking with others who are HIV positive and meeting with HIV community leaders. It has become increasingly clear that we have to know all the pieces of the HIV puzzle. It isn’t enough just to take your meds if you plan on living your life without limitations.

But knowing what those pieces are and fitting them into your life are significant challenges. There is just too much information to retain and too much involved with making it all happen in your life. This is leading to an incredible amount of frustration and unnecessary stress.

So my team has been hard at work focusing on the top ten challenges of living with HIV and doing something about making these pieces of the puzzle fit for you. The result of our work is a groundbreaking series of expert courses that are ten minutes long. That’s right, they are ten minutes – no more.

In the ten minute video course, we highlight key pieces of the puzzle for topics such as nutrition, exercise, and side effects. Then we turn the action over to you in a ten day action guide designed to help you fit what you have learned into your life. In my new online community, you will find support and guidance from others taking the course with you.

You become the expert at putting together your own puzzle. And you take control of your life with HIV.

Please make sure that you have signed up for our mailing list to get the first look at our Eating for HIV Expert Course and my new online community coming very soon.

And remember, there are no solutions without action.

There are times when fear is good.  It must keep its watchful place at the heart’s controls.  ~Aeschylus

Have you ever experienced a situation similar to the one described below?   

You are set for your monthly doctor visit. You have been feeling good, taking your meds, working out, and eating well. You stepped into the office and then backed out. The mere sight of it gave you the creeps. After a short while, you tried to step back in and couldn’t. You felt light-headed and your heartbeat started to go crazy. It sent chills up your spine. You felt the urge to run but you couldn’t — your difficult breathing left you immobilized.

What can we do about our fears? Can we stop them? Is there a way to use them to our advantage?

Fear is really designed to warn you. It is your body’s security alarm to keep you from stepping into unknown territory unprepared. If you re-discover the true role of fear in your life, you will find there are ‘good fears’ that lead to a ‘better safe than sorry’ approach or vigilance in dealing with your HIV status.

Fear is not meant to stop you, it could be used as a  means to warn you to be prepared. Fear tells you to think twice before you step out and do something you will regret later. It gives you time or another chance to think so that you can make better decisions and take fewer risks. This is the correct perspective on fear.

For instance, it is perfectly natural to fear getting an HIV test. It is not the test that is the real fear – it is the chance of the positive result. This fear can make you extra careful about the choices in your sex life.

We are also programmed to fear becoming ill or injured, especially the unknown factor in being able to take care of ourselves. This is not to stop us from living each day, but to keep us from doing things that could hurt us. This natural self-preservation is a huge motivating factor in choosing a healthy lifestyle and limiting the risky behaviors associated with HIV infection.

Here are just a few normal fears associated with HIV:

Fear of the unknown – If you don’t know much about HIV and what happens in your body, you might be afraid.

Fear of changes in your status – When your tests are good, you are doing great. But your viral load could go up on the next doctor visit and you worry.

Fear of disclosure – Could somebody at work find out? Will that make a difference with your boss? It is nature to be concerned about what others might think, say or do if they found out your status.

Fear of symptoms – You might get obsessed with each and every twitch or minor illness that you experience because of what it might mean  to your HIV. You spend a great deal of  itme taking your temperature, checking your lymph nodes and searching for signs of infection.

Anxiety starts with persistent worrying and causes a disturbance in your mood and emotional life. Mild to moderate anxiety is nothing unusual after a major life event like becoming HIV positive. But fears and anxiety can get out of control and take over your world if you don’t deal with them.

Want to know more about fear and how to use it to your advantage?

Please make sure you get on my mailing list by putting your email address in the box to the upper right or go to http://myhivaidsawareness.com.  I’ll have some more information about HIV fear and anxiety coming your way very soon!

We enjoy reading and watching Mark S. King’s chronicle of his life as a gay man in recovery living with HIV. It is a must read here.

Mark created a great video blog on Six Tips for Choosing Your HIV Doctor that everyone looking for or thinking of changing doctors should watch. I don’t think Mark will mind too much if I give you a preview on his most important tips:

1. Interviewing a doctor is common and okay.
2. Bring medical records and a summary.
3. Find out the doctors credentials and education.
4. Try to combine HIV and primary care.
5. Check hospital privileges.
6. Be sure you feel comfortable being honest.

Mark’s biggest advice is to not be afraid to ask questions about anything you think is important. It is absolutely okay to ask questions about a doctor’s background. If he/she doesn’t like your questions and gives you an attitude, get another doctor.

You can watch Mark’s video at:

http://marksking.com/my-fabulous-disease/video-16-six-tips-for-choosing-your-hiv-doctor/

Many patients diagnosed with HIV today will have normal life expectancies, two European studies have found.

The studies were presented at the 17th Conference on Retroviruses and Opportunistic Infections (CROI) found that certain groups of patients including those diagnosed recently and some patients with high CD4 counts when they begin treatment – will have normal or near to normal life expectancies.

In the first study done in the Netherlands, for a patient diagnosed at the age of 25 their life expectancy came to 52.7 years. This means they would die, on average, at the age of 77.7. There was relatively no difference to the life expectancy for 25 year olds in the overall Dutch population which was 53.1 years.

The study known as ATHENA is a long-term national observational study that has been following HIV positive people in the Netherlands since the introduction of combination Anti-Retroviral Therapy (ART)

The researchers noted, “The life expectancy of asymptomatic HIV-infected patients who are still treatment-naive and have not experienced [an HIV or AIDS-defining symptom] at 24 weeks after diagnosis approaches that of age and gender-matched uninfected individuals.”

It is important to note that the follow-up time in the study was short and that the predictions are dependent on ART treatment continuing to work. It is worth emphasizing that this study also excluded late-diagnosed patients.

In the second study performed in France in 2005, a similar result was reported.

In a time when we are concerned about the cost and support for continuing ART treatment, these studies reinforce the importance of early diagnosis and continued therapy.

To read more about these studies and how they were conducted, please read:

http://www.aidsmap.com/en/news/507F3477-660B-4D89-8527-DD915A1B339D.asp