Like any veteran HIVer who treasures his undetectable viral load as a child reveres a Little League trophy, Andrue Scott saw his pride deflated when his viral load suddenly jumped to 859 in September. But instead of wilting into a hand-wringing basket case, the 56-year-old Minneapolis resident gathered his emotional bearings and simply refused to break a sweat.
While his doctor believed there was an urgent need to get an immediate follow-up blood screening, Scott disagreed. He knew his body, so he assumed the spike in his HIV was a result of stress. He says he felt perfectly healthy overall but was suffering intense grief from what he called an 'anniversary aftershock' to the devastation of losing his right leg to cancer a year before. He told the doctor, who is not an HIV specialist, that he was sure things would return to normal in a few months'once his emotions calmed down a bit.
His physician was skeptical and rushed him to get another blood test, which also showed an elevated viral load. Put off by a doctor who, however unwittingly, took a course that increased his anxiety rather than lessening it, Scott made the vital move of switching to an HIV specialist. And sure enough, by February his viral load was again undetectable and his T-cell count was a robust 800.
Scott says his new doctor is much better at answering his questions, no matter how elementary, about lab reports. 'I think the worst thing for me'and probably a lot of other people'is the fear of the unknown,' he says. And like all HIVers, he struggles to make sense of how the numbers on the page may or may not really reflect his overall health or how he feels from day to day.
Sigmund Freud's most fundamental principle of psychoanalysis was 'Where id was, ego shall be.' In plain English: By seeing a shrink you will uncover the unknown. Paradoxically, this does not necessarily make for a happier patient'wiser, yes, but sometimes sadder'and the same can be said for reading a lab report.
Watching the jumble of numbers bounce like Mexican jumping beans can stir the stomach of even the most determined optimist. How is anyone to make sense of all this data? In particular, if you are feeling well but your numbers are lousy, how are you supposed to reconcile the apparent contradiction? Or how about if you feel sick but the numbers are rosy?
When doctors look over your lab reports, they seek clues about the way your body is functioning. If the numbers are abnormal, there are various courses of action: (1) Get the test done again to make sure it is accurate and reflects a definite trend; (2) take different tests to look for other underlying problems; (3) make lifestyle changes; (4) add new medications; or (5) change antiretrovirals. Or you can just take the numbers with a grain of salt and focus more on how you feel physically'an important concept that is often overlooked in clinical practice, many physicians say.
To Each His Own
With HIV patients, certain tests jump to the fore. Big surprise'T-cell counts and viral loads are at the top of the list.
T cells, also known as CD4 cells, are the immune system's building blocks that HIV attacks; a normal range is about 800 to 1,200 per microliter of blood. HIVers tend to flip their lid if these numbers drop. Still, if you are on medication, you can have as few as 100 and still not be at significant risk for getting sick. That is a big reason why your numbers might not reflect how you feel. Also, it is important to understand that CD4 counts are notoriously variable. Many things, including a cold, recent stress, an STD, or even the time of day can shift your numbers greatly.
'The things we look for in the CD4 count are not just the numbers but also the trend,' says Daniel Kuritzkes, MD, an HIV specialist at Brigham and Women's Hospital in Boston, a Harvard University affiliate. 'If over two or three visits there is a consistent trend, then there is a reason to believe that the change is real.'
In other words: Do not have a cow if your CD4 numbers drop all of a sudden [see 'Fishing for T Cells,' Clinic, August 2004]. Get tested again after some time has passed to see if the shift was just a fluke.
You can take the same approach concerning viral load. Recent studies have shown that upward 'blips' in viral load usually do not mean that medications are failing. These are natural fluctuations, and the viral load should settle down again before long [see 'Viral Loads: Amazing History,' Clinic, October 2004].
Naturally, if your viral remains high and your CD4-count drops, you may want to consider discussing with your doctor whether to change your drug regimen.
Just Like the Rest
Many of the other blood levels that doctors monitor on a regular basis can be worries for anyone, HIV-infected or not. Tony Mills, MD, an HIV specialist in West Hollywood, Calif., who is HIV-positive himself, says, 'This is the gift of our surviving HIV'that we have to worry about these things that other people have to worry about.'
Such tests include the biggies of cholesterol level and liver function. Anti-HIV medications can elevate these levels, and liver damage is a primary concern for someone who is coinfected with hepatitis B or C. Doctors also want to check to make sure your red blood cell level is normal because many anti-HIV meds can also cause anemia. There is an array of other tests in the usual blood screening process [see accompanying article 'Test Anxiety'].
Many innocuous things can throw off lab results for CD4-cell counts, viral loads, and other indicators. If you neglected to fast before your blood draw, your 'lipid panel,' which measures your cholesterol and triglycerides, might be out of whack. Dehydration can also change the readings of some tests. And testosterone levels vary according to the time elapsed since your most recent injection'for people on replacement therapy'and by the time of day for those who are not.
Sometimes, certain elevations out of the normal test ranges are nothing to worry about. According to Antonio Urbina, MD, an HIV specialist at Saint Vincent's Hospital Manhattan in New York, if a patient is on anti-HIV meds, the AST and ALT'or 'transaminases,' which are indicators of liver health'could be up to three times the upper level of the normal range without risk of liver damage.
Also, if you are on atazanavir or indinavir, the drugs might raise your bilirubin level. Elevated bilirubin usually is a sign that a person is suffering from bile duct blockage. But even in this case, there is probably no cause for concern'unless you are jaundiced (which results in yellowing skin and eyes) and cannot stand looking like you have been dipped in pumpkin pie mix.
Going Too Far
Even with such reassurances, it is still easy to obsess over numbers and to worry about what the future holds. The tricky thing is that stress like this can actually make you sick.
'We know that profound psychological distress can suppress the immune function, and it can in fact accelerate disease progression in HIV-positive individuals,' says Bruce Kellerhouse, Ph.D., a New York City psychologist who treats many people with HIV and AIDS.
He says the personality types of HIVers who let their numbers take over their lives often fall into two categories. One consists of those who have a history of unresolved grief or were raised in a family that had a constantly elevated level of anxiety'say, worrying about paying the bills or the process of a divorce. Kellerhouse says such people are, in a sense, 'infected with anxiety' during their childhoods'they grow to believe that being anxious is a constructive emotion.
The second type of number cruncher is the hyperperfectionist, who ruminates excessively when anything in life falls out of the 'perfect' range. This person tends to see things in black-and-white. Kellerhouse recommends seeing a mental health specialist to deal with this anxiety and to define your life outside of HIV in order to lessen its power over your emotions.
HIVer David Hanson, 55, has found a clever way to make sense of his fixation with lab numbers. 'The obsessive-compulsive part about numbers is really about just numbers in general,' says Hanson, a resident of Lake George, Minn. 'For example, one of my favorite things to do is follow movie box office numbers closely. I view my lab numbers about the same way, although they do have a larger effect on my life than the box office. I do not find them hard to avoid, but it is interesting just to see how they change over time.'
Michael Shernoff, a New York City psychotherapist who has been HIV-positive since the very early days of HIV, echoes Andrue Scott's feeling about looking out into the unknown.
'The job of the counselor or therapist is to help somebody expect to tolerate the enormous ambiguity that comes from the overwhelming uncertainties over what it means to have this diagnosis in this day and age,' Shernoff says. 'So it really becomes a therapeutic issue about how do they relate to uncertainty. And how do they relate to having some fear. I do not try to take away the fear'because I cannot. But I validate it and change my patients' relationship to the fear and the uncertainty.'