Newly diagnosed and frustrated
Jan 9, 2005
Diagnosed in Oct of '04 after seeing my doc for anxiety/panic attacks, blurred vision, floaters and swollen glands. At that time I was referred to a large clinic at a very reputable university in the city that I live. I was seen there by an ID doc and was told that my T cell count was 372 with a viral load of approximately 26 thousand. My symptoms got worse really fast, more swollen glands, tender to the touch, increased vision troubles and numbness tingling in hands and feet. My hands and feet stayed cold all the time with noticeable color changes. I felt horrible. I pushed for more labs at this time and after much discussion finally more labs were drawn and my viral load had jumped to 36 thousand with T cell of 403. The ID doc at the large clinic dismissed what I was feeling to depression/anxiety and sent me on my way. I continued to feel horrible and my symtptoms increased very rapidly this time with weight loss and noticeable loss of fat in hands, lower arms and feet and lower legs. It was now the first of December and I went for a second opinion at a much smaller private practice and felt more comfortable with this particular ID doc, feeling that she listened to what I was feeling and the changes in my body that I was seeing. She redrew labs and my viral load was now over 130 thousand with a T cell count of 332. I was started on Sustiva and Truvada and feel quite pleased with the drug regimen. My concern now is that this private practice is very limited to pretty much this ID doc and her partner unlike the large clinic at the university that had dieticians, physiotherapists, and a multitude of other disciplines that are used in a comprehensive approach to patient care, all dealing with HIV/AIDS. Part of me really wants to return to the large clinic just for the large knowledge base and wealth of information and other specialists involved while the other half of me is grateful for the smaller practice for recognizing my concerns and listening to what I was experiencing without turning me away with an appointment three months down the road! With my current numbers being where they are It frightens me to think where I would be number wise if I hadn't got the second opinion and agreed to wait until February. Was the second opinion too hasty....did I make a mistake by choosing the much smaller private practice....? Am I doing more harm than good without the more comprehensive care approach of the large clinic? Any and all advice will be much appreciated!!
Response from Dr. Pierone
It sounds like you made the right decision to get a second opinion and that things are going well. High quality HIV medical care can be provided in large academic clinics or in mom and pop small office environments, but as you note, they are entirely different settings. The most important consideration (and this trumps the locale) is that your clinician must listen and be responsive to your concerns. In your case it sounds like the second doctor fits the bill. By the way, female physicians are usually ranked higher in patient satisfaction surveys than male physicians. In addition, behavioral studies show that they listen better, interrupt less, and tend to be more empathic than men.
The ultimate decision about where you should receive medical care really depends on your needs. Some people don't need or want dieticians, mental health counselors, adherence counselors, support groups, and physiotherapists - they just want to go to the clinic every three months, get their blood work done, see their provider, and get the hell out of there. Yet others will benefit greatly from the support and resources available at an academic center. These choices are not mutually exclusive by the way. You can keep your local doctor and still go to the academic center periodically to access services that may not otherwise be available. Be sensitive to the fact that some doctors get defensive about having their treatment decisions care second guessed from an academic center (although this typically doesn't bother the really good ones). Hope this helps and best of luck to you.
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