September 9, 2013
It began simply enough. My doctor's office called to say that he wanted to speak with me directly about follow-up lab results. When pressed, the staff said he would not discuss anything over the phone. We scheduled an office visit for the next available appointment, several days away. Over the years I have received the same summons many times. They begin with a call stating that the doctor needs to see me in person. Memories of those calls came flooding back, along with an uncomfortable heavy sensation in my stomach. Some of those calls have been devastating (cancer), others were non-events. I hung up the phone, closed my eyes and tried to center myself, with little success.
This had all begun a few weeks earlier when I went in for my regular checkup. I was undetectable for so long that my check-ups occurred only once every six months. In July, although my T cells were higher than ever, I had a slight viral load. My doctor decided to repeat my labs and also do a genotype to determine if I had developed drug resistance.
When I finally saw him he wasted no time discussing his concerns. My viral load had dropped slightly since the first test (a statistical blip), although it was high enough to perform a genotype which showed that I had developed resistance to both drugs in Truvada, a key medication in my regimen. Based on the labs he decided to discontinue the Truvada and begin a newer drug (Edurant) which he said had few side effects. That was it. After ten minutes I walked out with a plan.
I have lived with HIV for many years and understand how important it is not to focus on any one set of numbers. Granted, having a viral load after being undetectable is concerning, but I had long ago learned that any given test is just another data point. More significant is the trend over time. Despite my positive self-talk, my feelings demanded attention.
Like many people who have lived with HIV for a very long time, I spent years managing with limited options, waiting for the next drug while hoping that I could last until it became available. I lent my body to studies and advocated for accelerated release of medications. The arrival of protease inhibitors in the mid-1990s came at the last possible moment for me and opened up the possibility of survival once again. I know from personal experience that options can indeed run out. My first partner got the news in 2002 that there were no effective medications left for him. He died in 2004.
As I walked out of the doctor's office I told myself this was just a med change and it would be fine. I believed that too, except old memories of similar experiences had been activated. I knew those feelings must be addressed by identifying them, expressing them, and letting them go. I was surprised at my resistance to really feeling anxiety, which was connected to so many other unpleasant memories and feelings. Avoiding it would only result in prolonged discomfort. I began to talk about it and let it go, and then I bumped up against another feeling: shame.
Emotions seem irrational at times (although I have discovered they often make perfect sense given a person's history) and I was annoyed with myself for feeling embarrassed about having a viral load. My doctor had asked me pointedly if I had missed medications, which I had not. I am extremely careful about my meds, even calculating when to take them if I travel across time zones. His question triggered long-forgotten, old feelings of embarrassment, shame, and even humiliation. I had done nothing wrong, but once again the intensity of this experience triggered emotions that needed to be recognized and released. I thought of my clients, my readers, my family and friends. What would they think? Would they doubt I had consistently taken my meds? I called upon my support system to discuss these concerns, even these "irrational" ones, which ultimately helped me move past the negative feelings.
I am fortunate to have extremely good insurance through my partner. The pharmacy plan requires that I receive my meds via mail order. Since I couldn't wait for that process, I opted for a 30-day supply from a local pharmacy. My insurance penalizes obtaining meds locally (even in these circumstances) and the copay for a month's supply of this medication was several hundred dollars, which triggered a new fear (and anger) about the cost. Fortunately my doctor had given me a brochure with the pharmaceutical company's patient assistance program. A brief phone call enrolled me in a program which reduced the cost to $5. It was a good reminder to check into all available options to cover the cost of the drug as there are often programs available for consumers.
I picked up my new drug and decided to check interactions (using an online checker such as drugs.com). This is an important exercise given the amount of drugs we all take. I admit I often do not do this, instead relying on my doctors. To my surprise a large red warning told me that I could not take Nexium with my new drug, Edurant. Like many, I see a number of specialists for different conditions. I make an effort to be certain all my physicians are aware of all my medications, but somehow Nexium fell off the list. A second level of backup would normally be the pharmacy, but by filling this prescription locally (at a pharmacy that didn't have all my meds on record) no interactions were noted. If I hadn't bothered to check this on my own, the effectiveness of the new medication might have been eliminated because of a drug interaction, further complicating both the suppression of my viral load and future medication decisions. A call to my GI specialist provided me with a safe option for a different medication that would not interfere with the new drug.
I recalled clients who don't know which antivirals they take; they simply follow the instructions of their physician. It is important for all of us to be full collaborators in our own care. This results not only in better safeguards but a sense of empowerment as well. It is, after all, our own body. It was a great reminder for me to remain vigilant about all my meds and how any changes can impact the entire regimen.
I'll have a repeat set of labs next week and hopefully everything will improve. I am struck by the lessons of this experience. As a therapist working with clients with HIV, I regularly review how to react to lab results and manage feelings on this (hopefully) long journey. For many of us life with HIV has become routine, which I believe, is a good thing. When our health status is disrupted, however, waves of feelings can be triggered. At those times we need to feel those emotions, activate our support system, throw any complacency overboard, and take charge. Our lives depend on it.
Read David's blog, Riding the Tiger: Life Lessons From an HIV-Positive Therapist.