The Road to Empowerment
Although I no longer subscribe to the traditional roles of the doctor leading and the patient following, I have often asked myself, "what would I do without my HIV doctor?" Shortly after my diagnosis, I became very sick and considered my doctor to be a lifeline. I depended on him to be knowledgeable and up-to-date, to recommend the best course of treatment, to listen to my concerns, to reassure me and give me hope ... a tall order!
Before my HIV diagnosis, my relationship with my family doctor was more traditional. I didn't realize I might need to question her professional opinion. Unfortunately, she completely missed my diagnosis after I went to her repeatedly with some of the classic symptoms of HIV -- skin rashes, recurring vaginal yeast infections, and bacterial pneumonia. I was finally diagnosed by the Red Cross after donating blood and by then my CD4 count was below ten. I know everyone makes mistakes -- including doctors -- but it really caused me to question my doctor's competency and I lost trust in her.
I see my relationship with my current doctor as a partnership, which may be considered somewhat untraditional. He advises me, but I am central in the decision-making process. I consider myself to be an empowered patient. I do my own treatment research and I am prepared to question my doctor when needed. He is always open, respectful, and ready to listen. I am very grateful to say that he has come through for me and has exceeded my expectations.
I trust my doctor and feel very comfortable and at ease with him. He has supported me with sensitivity and compassion through some of my most vulnerable times. My appointments are never rushed, and there is always time for me to raise questions and concerns. I admit that the healthcare system in Canada is on my side -- he is on salary and is not paid on a fee-per-visit basis.
A few years ago, I was referred to an HIV specialist for therapeutic drug monitoring (TDM) to have my drug levels tested. When discussing side effects, the topic of lipodystrophy came up. The specialist reviewed my cholesterol and triglyceride levels but neglected to ask about body fat changes. I told him that I had noticed a big loss of fat on my arms, legs, hips, and buttocks plus fat gain around my waist. I was distressed by this, and finding clothes to fit was a challenge. He asked me to stand up so he could take a look at me. He responded to my concern by saying, "Frankly, I've seen much worse." End of conversation! I felt dismissed and not respected. Looking back, I could have expressed my discomfort with his remark and insisted that he address my concerns.
Recently, taking charge of my healthcare became more important than ever. I developed extreme anemia and recurring fevers, the causes of which went undiagnosed for ten months despite being seen by several specialists. I endured weakness and fatigue and required blood transfusions every 2-3 weeks. It was further complicated by a diagnosis of hyperthyroidism, which was initially believed to be the possible cause of the anemia. As a result, no further tests were done for about two months while we waited for the outcome of the thyroid treatment. Waiting was very frustrating, especially since I felt there were other avenues to explore. When my thyroid condition resolved but the anemia and fevers persisted, the doctors were at a loss. At this point, I realized that I really needed to take charge and use all my resources. I asked to see another HIV specialist for an opinion. Although I knew it was necessary, it was difficult because I was worried that my doctor might feel I was losing confidence in him. I explained my need for more opinions since we were not making any headway and he was very supportive.
I also researched on the Internet constantly and discussed my findings with my doctor. I recruited the help of friends, one of whom was on her way to an HIV conference in San Francisco. She knew that a specialist who was presenting there might be able to help my situation. She approached him and he agreed to talk to my doctor about my case. As a result of that connection, my doctor sent my CT scan to that doctor and two others for their opinions. Unfortunately, a diagnosis was still not made, but I was grateful for and impressed by their willingness to cooperate. In the end, my anemia (and fevers) was resolved after my doctor suggested I stop taking Videx (ddI), even though anemia is not a known side effect of this drug. I witnessed first hand that strange things can and do happen on these meds.
This experience really highlights for me that there is a lot of unknown territory in HIV treatment and that doctors are still learning. I realize the importance of being resourceful and taking an active role in my treatment. Advocating for myself in this situation may also have brought about the resolution more quickly. This gives me hope and a sense of control.
Kath Webster is a volunteer HIV treatment educator with the British Columbia Persons with AIDS Society in Vancouver, BC, Canada. She was diagnosed in 1995 and has been HIV-positive since 1987.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.