Managing Multiple Conditions
Many people with HIV also have other chronic health conditions. Some people are co-infected with hepatitis B or C. Some are living with heart disease, others with diabetes, osteoporosis, liver disease, depression or other conditions. The older we get, the more common this picture becomes. In fact, various studies have shown that in North America three out of every four people age 65 or older are living with multiple health conditions.
Managing HIV on its own can be challenging enough. When one or more of these conditions get added to the mix—either a condition you were living with before your HIV diagnosis or one you developed afterwards—managing your health can become more complex. So it is helpful to be aware of some of the issues that can arise and to know how you can stay a step ahead of them. We hope that this chapter will help you to do just that.
A siloed approach to healthcare
Most clinical practice guidelines—documents designed to guide the decisions of healthcare providers regarding the best approach to managing a specific condition—do not make recommendations for people who have multiple conditions. One large study found that fewer than half of the guidelines assessed considered the interplay of multiple chronic conditions. Of the guidelines that did, most considered the needs of people who have two chronic conditions but not three or more.
So if you’re one of the many people living with HIV who have high blood pressure and are at risk for osteoporosis, for example, your doctor(s) may be left without guidelines to supplement their knowledge and experience. Plus, the typically too-short doctor’s appointment can leave little time for you and your doctor to weigh the risks and benefits of a complex treatment plan or for you to discuss your preferences and priorities.
This explains why many doctors follow the clinical practice guidelines for each condition a person has. But when recommendations conflict, this can leave people with HIV, and their caregivers, scratching their heads and may ultimately result in diminished quality of care.
Health complications and drug interactions
People with multiple health problems are more likely to develop complications (health problems that result from an illness, treatment or procedure) than people who have just one condition. And people who take medications for multiple conditions are at higher risk for drug interactions (this is when one drug alters the effects of another drug, food or supplement). The risk for such complications and drug interactions is highest when more than one doctor is prescribing medications for an individual. Recreational drugs and “over-the-counter” products can also interact with HIV meds and other prescription medications.
This is why it’s so crucial for everyone who is a part of your healthcare team—your doctors, nurses, pharmacist, mental health professional and others you might see—to be in the loop. To prevent drug interactions, it is also a good idea to get all of your prescription drugs from one pharmacy.
If you are living with more than one condition, as so many people do, you might find yourself juggling different doctors and other healthcare providers, as well as numerous appointments, diagnostic tests, medications and recommendations. But the truth is that you are not different body parts or conditions: You are one person and you deserve coordinated patient-centred care.
Things that can help
Despite all the potential challenges of living with multiple health conditions, rest assured that there are things you can do to get the best care possible. Here are some suggestions:
Try to find a doctor you can build a good relationship with
It’s important to have a doctor who is knowledgeable about HIV and works in partnership with you to deliver the best possible healthcare. He or she will be an indispensable partner on your HIV journey. Look for someone you trust and can talk openly and honestly with, someone who treats you with the respect you deserve.
When it comes to managing multiple conditions, here are some questions you can ask your doctor:
- Which doctors will be involved in my care?
- How experienced are these doctors in working with other healthcare providers and handling the combination of health conditions that I have?
- How will my care be coordinated? Will my various doctors and their staff communicate with one another so everyone knows what everyone else is recommending?
- In addition to the problems I might develop from one condition, will the combination of problems result in further complications? If so, how can these be handled?
Before starting a new drug, always ask your doctor or pharmacist: Is it possible that it will interact with the other drugs I am already taking? What side effects should I watch for?
Be your own care coordinator
Ideally, someone would oversee or coordinate all the care you receive, but most of us don’t have such a person. You might know from experience that you can’t assume that your primary care physician is keeping track of everything. So, you might find yourself in a position where you have to keep track of who is recommending what and informing your doctors of test results, what other healthcare providers are recommending and what drugs you are taking. A nurse or social worker might be able to help you do this. When it comes to medications, your pharmacist can help you.
Keep track of how you’re feeling
It can be helpful to keep a symptom diary where you record how you’re feeling physically and emotionally so you can show your doctor a record of everything you’ve been experiencing. It’s a lot easier to keep a daily record of symptoms as you experience them rather than having to remember them later.
The Personal Health Record can be used for this purpose. Print off a copy of these pages and use them to record your medical history, all the drugs you are taking, any symptoms you are experiencing, the names and contact information of all your healthcare providers, as well as things you wish to discuss with your doctor(s) at your next appointment. Or, if you prefer, you can start your own health journal.
Be sure your doctor sees the list of your symptoms and medications. This is the best way to ensure that your doctor has the information right in front of him or her and not buried somewhere in your chart.
Take care of your mental health
Living with more than one health condition and managing multiple appointments and meds can be stressful, particularly in the beginning. Feeling unwell, especially if you are in pain or have had to curb some of your day-to-day activities, can be demoralizing. Your physical health can affect your mental well-being and vice versa, so your emotional well-being needs some tender loving care, too (see also “Nurturing your emotional well-being” ).
Take steps to prevent drug interactions
When it comes to the medications you’re taking, your pharmacist can be an excellent resource. Many pharmacies check for interactions among all the medications you obtain from them. Of course, if you go to more than one pharmacy to have your prescriptions filled, be sure to let each pharmacy know about all the drugs you are currently taking.
You can also check for drug interactions on your own. Go to www.hivmedicationguide.com or www.hiv-druginteractions.org.
The more medications you take, the greater the chance that the interactions have not been assessed. Interactions between different HIV meds are usually known, but the same may not be true when you mix your HIV meds with a drug for high blood pressure, a diabetes drug and the arthritis drugs you need.
A large Canadian study found that people with more than one medical condition (and older people) are often excluded from clinical trials. The researchers found that 81 percent of the drug trial results published in the most prestigious medical journals excluded patients with coexisting medical problems. This means that information on the safety or efficacy of a new drug in people living with multiple health conditions might be missing. This makes it even more important for you to track any symptoms you develop so that possible drug side effects will be noticed.
Learn as much as you can
Last but not least, educating yourself about a health condition you develop can help you feel more in control. You will be able to make more informed choices about your care and treatment. People living with HIV have long led the way in this department—attending HIV treatment conferences, making the effort to participate in community forums on the latest developments in the world of HIV, learning about the latest treatments and, yes, reading guides like this.
More than any other patient population in the history of medicine, starting from the earliest days of the disease, people with HIV have worked in countless ways to educate themselves and others on the best ways to manage HIV. If you are managing multiple medical conditions, this model is an excellent one to follow. Educate yourself about any health condition you develop (look for information from reputable sources) and bring the information you have gathered to your doctor appointments.
Try not to feel discouraged. Will it be difficult on some days? Probably. Will there be ups and downs with one condition or another? Of course. But with your steadfast commitment to managing not only HIV but other conditions you may develop along the way, you have a very good chance of living long and well and being here to celebrate the advances in treatment that we know lie ahead.