Project Kengikat

When To Start Meds?

// September 2nd, 2010 // Uncategorized

There is so much information about HIV and AIDS and much of it is wrong, much of it comes from people who believe HIV and AIDS was created by the government for one reason or another and then there are those who dont believe that HIV and AIDS exist at all.

Combined with all the bad information you have the good, but many times even this can be very confusing and even cause a person to doubt. Doctors don’t agree, researchers don’t agree and in all of this are the people who have HIV or AIDS. People like me who have to figure it all out.

I was homeless when I was diagnosed in April of 2008, so for me right out the gate of being told i was HIV positive it was an uphill battle. I had so much more that i was already dealing with, but with all that I was already up against I refused to be yet another Black man on some statistic list who had died from AIDS. However in order for me to avoid this, I was going to have learn all I could about my HIV diagnoses.

Right away I knew I was not going to be able to do this alone and right away I knew I would not rely on what was told to me from the place where I was diagnosed because I already had trust issues with my care and how I was treated by every single person I encountered the 11 days I was at the hospital. I will say there was one person who seemed to care and this was the head doctor at the HIV clinic, however even this was not enough to get me to trust my care and overall well being  So much had already happened and could not be undone.

It took a while before I was teamed up with a great case manager and treatment educator over at AIDS Project Los Angeles, but even this was not enough for me. Google became my best friend, when I wasn’t looking for housing or trying to get things in order for myself as far as medical care was concerned I was online trying to as much information as I could on HIV. I started going to HIV updates and understanding your labs presentations, I asked questions of my case manager, treatment educator and of my doctor.

The more I searched the more I learned the more educated I became and along the way I was able to meet some pretty amazing people who to this day are the very places I turn to for advice, guidance and support. My unwillingness to be ignorant about HIV has led me to where I am now and even with all the information and education that i have been able to gain, there is still so much more I need to know, need to learn and need to soak in and I will continue to do this, because I refuse to allow HIV lead to death and then lead to my death.

The hardest thing for me when I was diagnosed was not stigma or accepting the fact that I was HIV positive. However it was a lack of education and by this I mean education on HIV. The only person who could change that was me. It didn’t matter if I had the leading educators and doctors in the world backed with the latest and best information at my finger tips, if i was not willing to accept it, it would mean nothing.

I didn’t understand how I could be sick, but not taking any meds to help me fight. Each time I asked questions it was met with “Mr. Carr you are ok and right now you dont need to worry.” To me this was bullshit and I needed to move away from anyone who was giving me this information. I needed to fully understand why I was diagnosed with HIV but was not treating the HIV.

Today I have a great doctor, a great clinic with an awesome support team at this clinic. I also still have access to my frist case manager from APLA as well as the Treatment Educator, I still have access to the most amazing nurse I have ever met and yes, GOOGLE is still my best friend. Currently I am still not on HIV meds and I fully understand why.

The other day I watched a video from someone who is newly diagnosed who says their viral load is over 100,000 with a cd4 count of a little more then 500 but what raised the red flags and sounded off so many alarms was the fact that this person said his doctor stated that he would not be starting meds until he T-Cells (cd4) fell to 300.

Right away I knew this person had no clue about their HIV diagnoses and had no clue as what the standards of care are here in the United States. Furthermore he hasn’t fully taken the initiative to educate.

The standard of care  state that the recommended treatment guidelines are as follows

500 and below it is recommended that you start HIV meds

500 and above with a viral load of 100,000 of more. It is recommmended that you start HIV meds

So if your medical professional is telling you that you should wait until your T-cell (cd4) drop below the recommended treatment guidelines then you really need to ask some question as to why they are not following the recommended treatment guideline.

Moreover you should always ask questions and make you are fully engaged in your medical care. You need to make certain that you are doing all you can to stay up to date with the latest treatment guidelines. With things like GOOGLE it makes no earthy sense for anyone not to be fully educated about HIV and AIDS.

The bottom line is this, people who are HIV positive need to be doing all they can to educate themselves about the diagnoses they have. To ignore it and half step around it, simply demonstrates the lack of respect and love you have for youself.