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The Latest Stories By Louis "Kengi" Carr

  • Six years in
  • Adherence
  • Starting treatment
  • Lady of the house
  • The power of being present

Louis "Kengi" Carr

Louis

Louis "Kengi" Carr is a California native, born and raised in Santa Monica. He is a published photographer, writer and guest speaker. Formerly a private chef and events caterer, this formerly homeless, HIV positive, proud Angelino is now a activist and advocate for people with HIV and homeless individuals. He is the creator/founder of Project Kengikat, Do Something Saturday, Unplugging HIV and the author of 29 Months.

A lover of photography, blogging and vlogging and USC Football, Kengi has been rediscovering his love for Los Angeles, ceramics, painting and cooking while elevating the conversations of HIV and homelessness. He enjoys being outdoors, spending quality time with his friends and his amazing rescue dog Dodger.

Jan02

Starting treatment

Thursday, 02 January 2014 Written by // Louis "Kengi" Carr - L.A. Correspondent Categories // Gay Men, Health, Treatment, Living with HIV, Opinion Pieces, Population Specific , Louis "Kengi" Carr

Kengi went for five years without taking HIV meds, but started just four months ago. Here’s why and how he is managing.

Starting treatment

Since being diagnosed with HIV back on April 3, 2008 my main focus has been to remain well and stay in control of my own health. This meant being very proactive about my care and who was administering my care. From the start this has been no easy task, but I’ve managed just fine.

My biggest fear has always been not being able to access HIV medications if and when the time came for me to start HIV treatment, so to make certain that my body would not have to fight any harder than it already does, I set my own treatment guidelines. I was going to be completely in charge of my care, not some CDC standard of care or some doctor firmly tucked in the pocket of some pharmaceutical company. This was going to be my care, my rules and my way.

My T-cells were well above the recommended guidelines for starting care and my viral load was pretty low as well. However the doctor that diagnosed me recommended I start treatment right away. It’s important to note that I was homeless, just nearing completion of another bout with cancer, barely making it to those required appointments, no place to store meds and no way of getting back and forth to the new HIV doctor, so I declined.

August 2013, nearly 5 years into my diagnosis, still doing very well without care two key factors that I set for myself to start care came into the picture. My T-cells had dropped below 900, (but my viral load was still rather low) and I’d been dating someone who’s HIV negative. So I talked it over with my doctor and I made the choice to start HIV treatment. After my blood work came back my doctor and I discovered something we both pretty much knew: I had no resistance to any class of HIV medications which meant my options were wide open. I had already been doing much reaching on HIV medications, plus my community work with people living with HIV was also first- hand, real life experiences that also helped me make my decision on which meds to take. Ultimately I decided to take STRIBILD.

I wasn’t going to tell many people that I was starting HIV treatment, because some people would automatically assume I was sick and about to die. Plus I made the huge mistake of telling the wrong person when I was diagnosed and she took it upon herself to send out a massive email asking people to “pray for Louis, he’s in the hospital with AIDS and may not make it”.  I started hearing from people I didn’t even know I went to school with asking me if I wanted “books” and one person even offered to help “feed or change you”. This time I only informed my close and dear friends who were very supportive of my decision.

It’s been five months and so far there have been no problems with taking the medications, no real side effects that I can speak about besides some very mild nausea the first few days which stopped after I started simply taking it without food. Now I can either take it with or without food with no problem whatsoever.

Making sure my support system was in place has been so crucial for me, because even though I said there have been no problems taking the pill, there have been plenty of problems getting the pills which really fucked with my mental health and caused me to question care altogether and if I made the right decision to start care in the first place.

What I’ve learned the most about starting HIV treatment is that I MUST take nothing for granted and NO ONE can become complacent with my care. I’ve learned that being well informed can also mean you get branded a “know it all” and even “difficult” but being a Sickle Cell patient my entire life being branded doesn’t affect me at all, it just reminds me to push harder and demand better from those who are paid to provide care to me.

I would strongly encourage anyone who is newly diagnosed, and even those who are not, to ask questions, do your own homework, read and learn as much as you can about HIV, so you are able to make well informed choices/decisions about your overall health care. Most importantly, surround yourself with people who love and support you fully, people you can talk to and bounce ideas off, people who will help you recover from the battle scars HIV or AIDS care will inflict on you. For me, HIV has been 95% mental, meaning all the people, places and things you must deal with, and 5% HIV, so it has been very important for me to have strong people in my life to help me get past the sink holes along my path. 

I take one pill once a day and my life moves forward just like normal. My plan to remain healthy and in complete control of my own care is going well.

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