Category Archives: Physical Health

Provider Communication

I am a woman living with HIV and I try my best to adhere to my infectious disease (ID) doctor’s treatment. However, sometimes I get sick and end up at the emergency room (ER). In those moments, I need the ER physicians that I interact with to actively communicate with my ID doctor about my treatment and care.

I have had experiences when an ER doctor would change my HIV medications, and it makes me worry. Then, when I go to my next ID appointment, my ID doctor is frustrated and wants to know why my medications were changed. Imagine how I feel as the patient! My meds being changed over and over again, and me, the patient, sick, stuck in the middle of two doctors who are not communicating with one another.

It is important to understand that an ER doctor is seeing you at one point in time. Your ID doctor knows your entire HIV history and what is normal for you. Before changing any medications to treat a momentary problem, ask your ER doctor to consult with your ID doctor. Putting something in your electronic medical record that your ID doctor may or may not see is not consultation. That is simply informing; not consulting.

What should you do if the ER doctor will not communicate with your ID doctor. I see that there are two other options:

1) Ask to speak to the ER doctor’s supervisor and share your concerns there. Remember, you can always go up the chain of command!

2) Try to get in contact with your ID doctor yourself. This could mean calling their office, emailing them, etc.

It is important that you and your ER doctor communicate with your ID doctors so everyone is on the same page about your treatment and care.

*This post was adapted from a message originally published in the “LTAI Calendar of Recommendations for Providers Serving the Positive Community.”

Advocating to Our Providers

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Some days I feel that the medical community is failing us. I might have known about my HIV status sooner, if only a doctor had advised me about getting tested. Before I was diagnosed with HIV I suffered for over 18 months with thrush, not knowing what was wrong with me, my symptoms getting worse by the day. I eventually lost all of my ability to taste and went to a clinic for help with this issue. The Physician Assistant examined my mouth and suggested several blood tests, including an HIV test, to which I agreed. A few days later I went back to the clinic and was informed that I was HIV positive. I was in shock! After the additional blood tests, I was told I could have had undiagnosed HIV for 6-10 years. My CD4 count was at 12 and my viral load was over 157,000. I had AIDS!

I saw many doctors over the 6-10 years prior to my diagnosis. I believe my previous doctors looked at the number of years I was married and disregarded the thought of offering me the HIV test, even during my annual check-ups. This is a big problem and it may be why older women are diagnosed so late with HIV. A long-term marriage or relationship does not protect us from contracting HIV.

I know, first hand, just how much harm physicians can cause their patients when they don’t offer HIV tests! As positive women, we already know our status-but so many others do not, and many women are too embarrassed to ask for the test.

Are your healthcare providers talking to their patients about HIV testing? Next time you go in for your annual exams, talk with your provider about their HIV testing protocols. Advocate for providers to offer HIV testing to ALL of their patients. It is part of their responsibility; it’s part of their oath, ‘Do No Harm’.

*This post was adapted from a message originally published in the “LTAI Calendar of Recommendations for Providers Serving the Positive Community.”

Lab Result Victory!

I have always had a low CD4 count. My whole life my CD4 has never gotten above 20. But now, at the age of 26 I can finally say with happiness that my CD4 count is above 200, right where it is supposed to be!

I have always had trouble taking my pills. I would miss whole days and doses. It is only until recently, within the past two years, that I have started taking them consistently and on a tight schedule – that has been the main reason for my CD4 count rising.

I only got really serious about taking my meds when I was diagnosed with cancer in 2010. It was non-Hodgkin’s lymphoma stage 2- which was HIV related. I had a big tumor on the back of my left leg that had to be removed and it left a hole that you could sink your fist down into. I had to go through 6 months of chemo, which was horrible. I had to change the dressings on my leg twice a day and it was extremely painful, the only time I didn’t feel pain was when I was asleep. They finally put a skin graft over the hole in 2011 and then I had to do a month of rehab on my leg, so I could walk again. I decided I never wanted to go through anything like that again and taking my pills was worth it if I could prevent that. Ever since then I have been very consistent in taking my meds and I really hate missing any doses.

Do you have any victories you want to share? Comment below to share!