For better or worse, I’m blessed that I’m at a point in life where I can be fairly transparent about my story, about my history. This allows me to play a role of educator or connector, when moments present themselves.
Most recently, I’ve received a number of questions from friends wanting to better understand HIV/AIDS. I’ve been living with the HIV+ virus since early 2012, when I was diagnosed following an acute septic reaction to an antibiotic treatment I received at the time, which landed me in the hospital for 2 days. While I’m not a medical professional, I answer when I have the information, seek it from my advisors when I don’t, and do what I can to promote healthier sexual practices and awareness. I’m far from perfect, but do the best I can each day…
One bit of wise counsel my nurse gave me from the outset is be careful about searching for credible information on the internet. She gave me one site – thebody.com – which she trusted. Otherwise, she told me to come to the infectious disease office or my care coordinator (The Damien Center, in my case) with questions. I’m grateful for her support and wisdom.
In the spirit of education and awareness, I thought I would share this somewhat scary personal experience, in hopes that others may learn from it.
I was going to a new medical office for physical therapy, for a fractured rotator cuff. This office is part of a local, major hospital network (actually, the same network that owns the infectious disease office where I receive my treatment and support for HIV+). As with most such offices, they have a “new patient” survey, to gather as much relevant medical history as possible. I’ve had similar surveys when I sought acupuncture, yoga/massage, and of course, a new GP (general practitioner).
As I completed the form, I came to a question regarding my medical history, asking if I had any history of (and I quote), “Hepatitis/AIDS.” I looked through the rest of the questions in disbelief – and found no other references to HIV+, and couldn’t understand why they would list Hepatitis on the same line (with a slash!) as AIDS. Really?
I asked the office receptionist to speak to someone about the survey, as I found the questions to be inaccurate and troublesome.
My PT came out to talk with me. I explained to him my concern with the question, and that I was HIV+, on medication, and have a viral load that is undetectable. However, I have had neither Hepatitis nor been diagnosed with full blown AIDS… As such, I found the questions to be alarmingly wrong. Fortunately, he agreed with me and handled the situation tactfully.
First, as I started to bring up my concerns, he stopped me to ask if I preferred to discuss the survey back in an office (we were still in the waiting room) for more privacy. Yay for him! I was ok, since it was a chance for anyone listening to “become educated.” But, I’m glad he knew enough to ask… (There are Federal laws which protect what and how questions can be asked regarding one’s HIV/AIDS status. For more information, refer to this article.)
Second, when I suggested they change their survey as it was clearly wrong, he explained the source of the survey – which probably worried me even more. For medicare/medicaid reimbursement, they “buy” the online survey to measure outcomes, and to understand any potentially related illnesses / history. So, a “government agency” or “government backed” company provided the online survey questions – OMG. (Unfortunately, this meant it wasn’t as easy for them to update…) All very scary…
Third, he showed his own personal level of knowledge by asking me if I was immunodeficient, further explaining that he was just returning to work from being off with a cold/fever. Normally, it would be inappropriate for anyone to ask such a question, but he was totally appropriate – showing concern for my overall health. Basically, it was a tactful way of asking if my CD4 count was “healthy” – or was I at a higher risk of catching other illnesses, like the cold or flu. (Based on my viral load and CD4 count, I’ll normally say “I have the HIV+ virus, but am on medication, healthy, with an undetectable viral load).
So, shamefully, Hepatitis and AIDS were listed on the same line, as if they were related…and HIV+ (which is different than having AIDS) was not even mentioned. And this as a hospital/government endorsed patient survey!
At least I did my part and spoke up…brought it to their attention… That’s all I have control over. (Serenity prayer in action!) I hope his management makes changes…
In the spirit of education, I share the following key articles that answer many of the basic questions I get…all from the TheBody.Com, or vetted from other sources and included therein.
- What is HIV?
- The stages of the HIV disease (including AIDS)
- HIV Transmission FAQ
- Safer Sex Guidelines (note I said safer…not safe. Read on…)
- Two key “numbers” we track (as those living with HIV+/AIDS)
- CD4 Count – important part of the immune system. CD4 cells are sometimes called T-cells. Everyone has them – it’s a general measure of the state/health of your immune system. Higher numbers are better.
- Viral Load – the amount of HIV virus in your blood. Viral loads are usually reported as copies of HIV in one milliliter of blood. There are no “magic” numbers for viral loads. All we know so far is that lower is better and seems to mean a longer, healthier life. U.S. treatment guidelines (see Fact Sheet 404) suggest that all HIV-positive people be offered treatment. For patients with viral load over 100,000, there is urgency for treatment. The best viral load test result is “undetectable.” This does not mean that there is no virus in your blood; it just means that there is not enough for the test to find and count. There is no “safe” level of viral load. Although the risk is less, you can pass HIV to another person even if your viral load is undetectable (which is why we use the term “safer sex” as opposed to “safe sex.” With any STD, it’s all about relative risk! 🙂