My Medical Care Journey: Transitioning from Negative to Positive Care

Receiving an HIV diagnosis can easily knock you off your feet and stun you. This happened to me. Once the initial impact wore off, I realized that I had settled for subpar medical care. My medical care journey has gone from having a neglectful infectious disease doctor to finding a devoted infectious disease doctor.

My original doctor

When I was first diagnosed with HIV, I was hospitalized with PCP pneumonia. At the time, we were so shocked by the news, we simply followed instructions provided by the hospital. This led me to see a local infectious disease doctor from the hospital. I should have known this was a bad idea when I found out my husband at the time threatened to throw him through a hospital window when I was unconscious.

I will not say that Dr. J was an awful doctor, but he was not a good fit for my needs. When I was released from the hospital, my T-cell count was about 35. That is how sick I was at the time. I needed a doctor that was available to me during appointments and during times I did not have appointments.

Unfortunately, Dr. J was always traveling. He would be gone for weeks at a time. While there were other infectious disease doctors in his clinic, they would not see another doctor's patients. This meant that while Dr. J was traveling, I had no access to an infectious disease doctor.

The campaign to find a new doctor

This became extremely frustrating for my family and me. It also meant I spent a lot of time in the hospital because that was the only way I could get the proper treatment I needed. Constantly going back and forth to the hospital is no way to live if you can prevent it.

My sister and I decided it was time to find a new doctor. We went through my insurance company to get a list of infectious disease doctors. One of the main things we wanted was someone who was local.

My new patient appointment

The first new patient appointment we made with another infectious disease doctor went very well. The problem came when we looked at his schedule. He would only be in the office 2 days a week. So, frustratingly enough, we were back to square one with a doctor who was not available.

Finding the perfect fit

I will not lie; we consulted multiple doctors. It took us a while to find one that we both liked and who was accessible.

When we finally found Dr. O, I was ecstatic. She was super friendly, in the office Monday through Friday, had a voicemail system for after-hours issues, and had rights at the local hospital. In addition to all of this, we both liked her personality.

You are in the driver's seat

With this new doctor, I have been able to flourish without living part of my life in the hospital. My CD4 count is now routinely over 500. This is a major gain when you consider where I started. Dr. O and I also have built a wonderful relationship.

I believe it is important for patients to remember that doctors work for us. It is easy to fall into a mind frame where we believe that we do not have another option. We need to remember that we can fire doctors who do not put our needs first or who treat us poorly. There is always another option out there.