You want to stay well. Keep fit. Keep the gremlin that’s circulating in your bloodstream under control. And, most importantly, get on with your life. These are the simple aspirations most HIV-positive people have in common.
Monitoring immune system markers like CD4 and viral load, and, when the time is right, taking treatments for HIV is the single most effective strategy for achieving these goals — most of us are well aware of that. But “wellness” is more than just a medical issue — it means having good health and quality of life. Sometimes the emphasis on lab tests and treatments can obscure this.
So, apart from tests and pills, what other strategies, tips and tricks are out there that can help? Here’s a half-dozen small things you can do that might make a big difference to your long-term wellbeing.
1. You are what you eat
Good nutrition and good health go hand in hand for everyone, but for positive people, having a healthy diet can be even more important.
Every minute of every day, our bodies are working hard to fight HIV, and that takes a surprising amount of energy. Getting that energy means more than just avoiding junk food: a well-balanced, varied diet is one of the most effective weapons we have against illnesses of all kinds, including HIV.
So what’s a ‘healthy’ diet? Sometimes, people with HIV go overboard, trying to eat only ‘health’ foods or following fad diets. Others throw caution to the wind and gorge on comfort foods (we might call this the ‘life’s too short to eat brown rice’ philosophy). The best approach is somewhere between the two.
There are two main nutritional rules to be guided by. First, you should try to maintain a normal body weight, and second, try to eat a wide range of healthy, nutritional foods.
Numerous scientific studies have demonstrated the importance of nutrition for people with HIV. Weight loss, especially reduced lean body mass (muscle), has been shown to be a strong predictor of survival among people with HIV/AIDS. What that means is that, everything else (CD4 count, age, opportunistic infections) being equal, it’s the people with lower lean body mass who are more likely to become ill.
While clinical reports of HIV-related wasting have declined since the advent of HAART, it’s still important to try to maintain normal weight and, if you do start to lose weight, quickly determine the cause and respond appropriately. With heart disease emerging as a major long-term issue for people with HIV, maintaining a healthy body weight is even more important.
Sometimes this can present a major challenge. Opportunistic infections, persistent diarrhoea as a side effect of medications, and the additional energy burden of fighting HIV can increase the amount of food needed to avoid weight loss. Added to that, many positive people struggle with appetite loss and oral health problems that can make eating a chore instead of a pleasure.
If you want to take action to improve your diet, consulting an HIV-experienced dietitian is a great way to start. Many hospitals and HIV clinics across the country have dietitians you can visit, or your doctor may be able to recommend one in your area. The dietitian will measure your weight, calculate your lean body mass, look at your diet and advise on whether it meets your energy and nutrition requirements. Dietitians are also a great source of information and advice if you’re having difficulty eating or suffering from diarrhoea.
2. Pump, pump, pump
Exercise — both resistance (e.g. lifting weights) and cardiovascular (e.g. jogging) can make a big difference to people with HIV.
As well as increasing muscle mass, exercise reduces stress, increases appetite and energy levels, improves sleep patterns and may even directly stimulate the immune system. So you’ll look good, feel good and most likely stay well longer.
Additionally, many people with lipodystrophy say that regular exercise makes a big difference to their appearance and their sense of well-being, and exercise has major long-term benefits to your heart health whether you’re positive or not.
Unfortunately, many positive people have problems with low energy which can make exercising difficult. But you don’t have to spend your life sweating in a gym. Simple strategies like walking, doing housework, walking up escalators and dance, yoga or tai chi can all make a big difference. (So can sex!)
The basic standard is to raise your heart rate for 30 minutes three times a week. Start with simple, small steps (again, your dietitian is a great source of ideas) and work your way up.
3. Hep ain’t hip
Recent studies in the United States have found that liver disease, not AIDS, is now the major cause of death for people with HIV. Taking care of your liver and avoiding hepatitis A, B and C are important.
Vaccinations are available for hepatitis A and B, including a combined vaccine for both types. Unfortunately they aren’t free (but ask around; some states do have free or subsidised vaccinations in some cases) but the peace of mind of being vaccinated against these infections is worth the expense. These vaccinations do require multiple doses to be effective, so be sure and go back for the full course.
There is no vaccine for hepatitis C. People with HIV who become coinfected with hep C may progress much faster to liver disease than people with hep C alone. This virus is mostly spread through direct blood contact (sharing needles, or unsterile tattooing or body piercing are the major risks) but there is also evidence of spread through sex, especially among gay men who practice fisting and other adventurous activities.
Treatment options for both hep B and C are improving, so the outlook isn’t entirely bleak for people with hepatitis coinfections. Taking care of your liver — cutting down on alcohol, recreational drugs and fatty foods — is important.
4. Experience counts
Dealing with HIV calls for a team effort. The two most important members of that team are you and your doctor.
Building a positive working relationship with your doctor takes time but it pays dividends. If you don’t feel comfortable discussing intimate matters like your sex life, your adherence to medications, or recreational drug use honestly with your doctor, it’s hard to build that relationship. Likewise, your doctor should allocate sufficient time for your consultation, and be interested in and engaged with your wellbeing.
Try to make the most of your doctor visits by being prepared (take a written list with you if it helps remember the questions you have to ask). If your doctor uses language you don’t understand, say so. Sometimes your doctor won’t have time to explain, but (s)he may be able to give you fact sheets or refer you to someone else who can answer your questions more fully.
Choosing an HIV-experienced doctor can also be important. Several studies over recent years have shown that people whose doctors have more experience with HIV (typically five or more positive patients) tend to survive longer than those who don’t. This isn’t because the less-experienced doctors are incompetent, but because HIV is a complex illness and HIV treatment is constantly evolving.
In a study published in 2003, Canadian researchers found that physician experience and adherence to antiretroviral drug dosing were the two strongest determinants of patient survival.
Of course, not everyone has a choice of doctors — if you live in a regional area, for example — and if you’re happy and comfortable with your existing doctor, there’s no reason to change. If your doctor doesn’t see many HIV patients, you may want to discuss a referral to see a specialist immunologist for advice and review.
5. The value of shackin’ up
In a controversial study published earlier this year, Swiss researchers found that positive people who had stable long-term partners were significantly less likely to progress to AIDS or die than those who did not.
Admittedly, there’s only so much that anyone can do to act on this discovery — you can’t exactly have your doctor write you a prescription for a handsome, blue-eyed boyfriend or girlfriend. But there is an underlying message.
Several other studies have shown the importance of good social support for people with HIV. As well as reducing anxiety and alleviating depression, the emotional support you get from your friends and lovers may have a direct effect on your immune system. The Swiss researchers note that a stable partnership was a kind of surrogate marker for receiving good social and emotional support, not an end in itself.
You can’t get your doctor to prescribe you a circle of friends, either, but there are plenty of ways to seek out social support, such as joining a peer group at your state AIDS council, volunteering for your local PLWHA organisation, or going along to social and community events in your area.
6. Quit for life
Finally, if you’re a non-smoker, give yourself a pat on the back. Despite all the messages about the negative health effects of smoking, positive people are still puffing away. In the Futures 3 survey, almost 55 percent of respondents said they smoked tobacco.
Although studies have not found that smoking leads to faster HIV disease progression, there are plenty of compelling reasons why smoking is a bad idea for positive people.
A 1992 study found that smokers were three times more likely to develop Pneumocystis carinii pneumonia (PCP) than non-smokers. Smoking suppresses immune activity, making smokers more susceptible to opportunistic infections than non-smokers with the same CD4 count. Fungal infections in the mouth and throat may be more common in people who smoke. Positive people who smoke are much more likely to develop emphysema than HIV-negative smokers. New research shows that positive women who smoke are at increased risk of developing Human Papilloma Virus (HPV) infection. Finally, a study presented at the 2004 Retrovirus conference found that positive people who smoke are much more likely than HIV-negative smokers to develop non-AIDS-related cancers including lung cancer, melanoma, anorectal cancer and Hodgkin’s lymphoma.
If you’re one of the majority of positive people in Australia who smoke, quitting could be the single most effective strategy to stay well.
References:
1 Coodley GO et al, “The HIV Wasting Syndrome”, Current Treatment Options in Infectious Diseases 2001, 3:147-156
2 Hogg R et al, “Physician Experience is an Important and Independent Determinant of HIV-Related Mortality among Person Initiating Antiretroviral Therapy”, Conf Retroviruses Opportunistic Infect 2002 Feb 24-28;9:abstract no. 749-W
3 Wood E, Montaner J et al, “The Impact of Socioeconomic Status and Physician Experience on Survival from HIV-Disease Since 1996”, Conf Retroviruses and Opportunistic Infect 2002 Feb 24-28;9:abstract no 750-W
4 Kitahata M et al, “Physicians’ Experience with the Acquired Immunodeficiency Syndrome as a Factor in Patients’ Survival”, NEJM 1996 Mar 14, 334:701-707
5 Young J et al, “Stable partnership and progression to AIDS or death in HIV infected patients receiving highly active antiretroviral therapy: Swiss HIV cohort study”, BMJ, 2004 Jan 3; 328 (7430): 15
6 Galai N et al. “Effect of smoking on the clinical progression of HIV-1 infection”. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology 14(5):451-458, 1997.
7 Minkoff H et al. “Relationship between smoking and human papillomavirus infections in HIV-infected and –uninfected women”. Journal of Infectious Diseases, 189: 1821-1828, 2004.
8 Patel P, Novak RM, Tong T et al. “Incidence of non-AIDS-defining malignancies in the HIV Out-Patient Study”. 11th CROI 2004, Oral abstract 81.
