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Be the Chair of Your Own Board: Advice Before Starting Treatment

August 17, 2011

Khafre Abif

Khafre Abif

"If I could go back in time to the moment before I started HIV treatment, what piece of advice would I give myself?" I would advise myself to approach my decision the exact same way. I didn't begin treatment until seven or eight years after my diagnosis. As a librarian I was heavy into research and worked to find out as much as I could about the current treatments available. I read Websites like TheBody.com, and read POZ magazine from cover to cover.

What was apparent from the very beginning was that there were not many options. For that reason I made up my mind that I would wait. Having heard any number of stories about AZT (Retrovir, zidovudine), many of which were horrors, I prayed and asked GOD to sustain me to a time when my options would increase. After the prayer came the conscious decision that I would not begin a med regimen until my natural body told me it was time.

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I continued to read and research all of the newly FDA-approved meds, reading each description of each new med including the side effects, as well as the new magazines which became available. I have shared with you all that I know I was infected in 1989, and tested HIV positive in March 1991. In August of 1992 I married my first wife, and my son was born in November of 1992. I was in the first semester of graduate school. I finished in August of 1993 and immediately moved from Pittsburgh, Pa., to Washington, D.C. I began my first professional appointment as a children's librarian. The only person who knew that I was HIV positive, outside of my wife's physician, was my wife. I had convinced myself that from things that I heard and reading that if I were to seek treatment the medical insurance carriers of my employer would in fact inform my employer that I was HIV positive. So during the two years I served as a children's librarian for the Southwest Branch Library of the District of Columbia Public Library, I sought medical care at Whitman-Walker Medical Clinic. Only my wife and son used the private health insurance provider that I had.

Then I received an opportunity to take a position in a public library in New Jersey, where my wife was from. I accepted the position with the thought that I could take my wife and son back New Jersey where she would have the support of her family and I could die. The isolation from not sharing my status had me in a mental and emotional deep dark place, and I believed that I would never again see light.

Whitman-Walker Clinic armed me with referrals; one month after moving to New Jersey, finding a school for my son, a place for my family to live and starting my new position, my T cells had gone from 351 to 67. Still not wanting to use the private insurance provider, a case manager at GMHC in New York provided a referral for the Ryan White Outreach Clinic in South Orange, New Jersey. I need a prescription for Bactrim (co-trimoxazole) filled. I quickly found out that I was allergic to the stuff.

It wasn't until 1998 that I started my first medication regimen. Right now I can only remember that Norvir (ritonavir) was one of them. For me, out of the gate and taking 21 pills a day, this involved: seven pills in the morning as I prepared to get my son and myself out of the house for school and work; seven during the midday while serving as a manager in a public library; and seven in the evening after picking my son up from school and attending any number of afterschool activities I had scheduled for him. Not to mention I still had to prepare dinner when we got home, get him in and out of the bathtub and read a bedtime story.

I wouldn't change a single thing. I trusted myself, my God and my instincts to make the decisions I felt were best for me. These decisions were not always in agreement with my infectious disease physician, but I had done my own homework and developed a sense of what my body needed and could handle. It is amazing, when "my soul looks back in wonder how I got over." Look how far we have come. In April of 2010 I started Atripla (efavirenz/tenofovir/FTC), one pill a day.

What piece of advice would I give you? Read, share and trust yourself for what you need. Be the Chair of your own Board and allow the physicians, case managers, and others have a seat at your table.

Send Khafre an e-mail.

Read more of Freedom Rider, Khafre's blog, at TheBody.com.

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This article was provided by TheBody.com.
 
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Reader Comments:

Comment by: Victor Cerna (Lima-Peru) Sun., Jan. 8, 2012 at 7:55 pm EST
I hope many people around the globe can pay attention to your wise words bro!
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Comment by: rnkikone (Phiadelphia Pa) Mon., Sep. 19, 2011 at 12:37 pm EDT
In response to what I have read and witnessed most people are getting to know that in life you you need to make un open commitment on how to fight against any attack to achieve the best result. In the beginning people hard about the cause of Hiv/Aids but did not take it serious yet there was some thing to be done in order to control hopefully in few years cure will kick up and things will come back to normal please keep on fighting. thank you. hope is a key to victory.
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Comment by: Florence (Kenya) Fri., Sep. 9, 2011 at 8:27 am EDT
true true, when you read, you get to acquire so much information, most times more than what most peers would give you. knowledge is power, armed with the 'right' knowledge, one gets peace..., I get my strength from reading lots of stuff in AIDS/HIV without relying on any other support, I believe it also works, read,read to cope with the virus
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