Category Archives: Communicating With Providers

Toni and Danny: Ready for a Baby?

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How Ironic

Paying it forward has become a way of life for me. It is ironic that being living with HIV has opened so many doors for me, meaning I do not think I would have had the opportunity to meet all the awesome people in my life that I have.

It started with my psychologist. When I first found out I was infected with the big V, as I call it, boy, did I give her a run for the money, to say the least! So my point is I received years of psychotherapy just to deal with the fact that I was living with HIV. Being in therapy though, opened up a whole new world for me. I learned so much- from coping with the hand I was dealt to learning who I was as a person. Not by any means was all this an easy task. Therapy is hard work -I kid you not. You have to be able to look at difficult issues in your life. Had I not been infected with the big V, I probably would never have had the chance to be in counseling.

So that opened the door for me to be more open-to meet other great people in my life. I decided I wanted to leave New York. I wanted a slower pace of life, so I moved to Florida. My ID Doc at the time helped me so much. She made the phone calls for me where I was going to get my health care. That led me to a nurse who was at the health department in Gainesville. She helped me so much. Before I knew it doors were opening up everywhere for me. It was then that I started to want to pay it forward, for others who were where I started.

Since then it was like a domino effect- I felt so blessed, it made me want to continue to do more and more for other women living with HIV, because I knew first hand what they were going through. I must say the big V was my learning tool. And, it has made me the woman I am today. Ironic but true, living with the big V made me not dare to take anything for granted again in my life. It was like a whole new world was out there waiting for me. Who knew I would be still here today, so eager to make a difference in this life. This is some of what paying it forward means to me.

How have you paid it forward? Have any good suggestions? Share them with us!!

 

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.”

Overcoming Stigma

“How about a dose of dignity? All patients, especially those living with HIV, deserve to be treated with respect, dignity and kindness. Too often, women living with HIV are made to feel as though they deserve to be sick, that it is their fault for having this disease. No one should be made to feel this way, especially not by those in the medical community. Medical providers need to understand that their underlying assumptions about me- about how I got the disease, what sort of lifestyle I lead- I see those assumptions in the way they look at me, speak to me, and interact with me. From the minute I walk into the doctor’s office and speak to the receptionist, to the time I walk out that door, I deserve to be treated as a human being by each and every member of the staff, not as their assumptions dictate I am. And so do you!

We need the kindness and support from our entire medical team. Remind providers to put themselves in your shoes. How would they want to be treated if the roles were reversed? We are not our illness. They need to treat us with the same dignity and respect they would want to be treated with, HIV positive or not.
*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.”