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Undetectable? Whaaaat?

March 29, 2013

Treatment Cascade: A Spotlight Series

Treatment Cascade: A Spotlight Series

I think everyone who is living with HIV can remember, with great clarity, the day they were diagnosed. I believe that even if you were in a drug/alcohol induced fugue, you still were able to remember that day.

It is a day that is forever ingrained in your memory, and if you were high or drunk when you received your diagnosis ... you sobered up real quick! Now this is not to say that most folks who are HIV + fall into that category. But if you were caught up in that lifestyle, receiving an HIV diagnosis was not something that you didn't remember the next day. Receiving that diagnosis was enough to blow anybody's mind.

If you were a person who was in a (what you believed to be) "committed" relationship, your mind was equally blown, upon finding out that your partner was not as committed as you believed him or her to be.

You remember that day!

The same goes for those who received blood transfusions, before they were screened.

You remember that day!

I don't care what situation you came out of ... hearing that news was devastating! And depending upon the situation, you may have had other issues to deal with in addition to the diagnosis.

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Upon hearing the words: "The result of the HIV test came back positive." Of one thing we were certain: "ish just got real" (to put it mildly).

You remember that day!

And if you believed (as I did), you got ready to die. If you had a partner (my husband), who had just died within 6 months of finding out his diagnosis ... the prognosis for me didn't look very promising at all!

Thank God for my family. Thank God for my pastor. Thank God for my doctor ... and thank God for GMHC (Gay Men's Health Crisis) in New York City, where I lived during those early years! Each person was an integral part in my coming to grips with what I initially perceived to be a death sentence.

My family, albeit aloof most of the time, pulled together. In this case, they initially received the news with much sadness, and grief. They had to get educated. But since I had been clean from drugs and alcohol for about 4/5 years, they have always been my first and greatest support system. We got down to business.

Fight or Flight? (cause initially I struggled with how I was gonna leave this planet ... sober? or high?) Spirit and I decided ... sober. And so the fight began.

My pastor encouraged me, by welcoming me with open arms and telling me stories of people in the bible, and by doing all she could to erase the stigma within myself (because nobody in Transfiguration Lutheran Church in the Bronx made me feel unwelcome or stigmatized me).

The clinic I attended was GMHC and my doctor encouraged me to begin medication as soon as possible, as my numbers were quite low. So I began the medication. AZT to start, which was horrendous. I was taken off of that, and put on a host of other medications, trying to get my numbers up. (At that time CD4 was the number they were paying attention to).

The medications I remember:

  • AZT and then AZT + 3TC
  • Combivir
  • Epivir
  • Zerit
  • Sustiva (oh, the technicolor nightmares)
  • Agenerase
  • Crixivan
  • Kaletra
  • *Norvir
  • *Truvada
  • *Prezista

I am currently on the last three. Have been for what feels like YEARS!

I was also on another medication, that took every bit of strength I had during the early years. I would get tired of taking meds in the early, put myself on a drug holiday (without my doctor's knowledge), and my numbers would plummet, and my body would become resistant to the medication -- taking us back to the drawing board to find new medications. Eventually, this became a problem, as there were no more drugs available for me, which my body hadn't become resistant to, with the exception of FUZEON!

Fuzeon

Now, THAT was a drug ... and THAT was an experience that lasted more than 4 years. I had to inject myself twice a day! It called for total commitment, and endurance. I had to wait for something that would work for me. But in the waiting ... I went to get my blood-work done, oh about 6 months in ... and whatta ya know? I was UNDETECTABLE!

And THAT was another day, I remember with clarity. Waking up and dreading my doctor's appointment, because I knew I was going to get my blood-work results, and because I was about sick and tired of injecting myself. I was tired of Fuzeon, I was tired of medication, I was just tired of it all.

I sat down in her office, and she pulled out my chart and looked at the labs, and smiled. I was like ... okay, what is my CD4? And had been explaining to me months before that they were beginning to look at this thing called "the viral load" ... and how that was more important than the CD4 count.

She told me what my CD4 count was, which had peaked a bit ... but she was still smiling. And then she said: Guess what Andrena? Your viral load is under 50 copies! She was cheesin'! Grinning from ear to ear! I still didn't understand what that meant, until she stopped grinning long enough to tell me. That it meant that the virus in my body was undetectable, the virus was below the level of detection.

I remember that day, and I remember it, because even though she explained it to me, I still didn't quite get it, until a few days later ... my mind had to process it. It meant that the Fuzeon was working. It meant that I was NOT gonna die (anytime soon). It meant that I had the lowest amount of HIV in my body.

I was ecstatic!

The downside, however, was that I had to continue on the Fuzeon until something else came along that would for me. Even though I was happy about being undetectable, I had to continue injecting myself and my injection sites were becoming less and less available, and my body just felt hard and lumpy and sore all over!

... and then came Truvada and Norvir. There was another drug with that, but it escapes me right now. I just know that Truvada and Norvir have been my constant friends for the past 10 years. I have been on Prezista for the past 4 years.

Being undetectable is still a miracle for me! I love my doctor and follow her wherever she goes (she has changed clinics twice). Honestly, though, I still go to my doctor's appointments feeling apprehension about my blood work; even though it has been 10 years.

Undetectable? Whaaaat?

I am still undetectable! Whaaat???

... and now I am finding out that there is a study out that states HIV cannot be transmitted if you are undetectable. (Not that I am in the position to 'transmit' anything to anyone -- I am very single!) lol

But here's the thing: I don't know that I would trust that information. Not saying it is not true, I'm just saying I would just be safer advocating abstinence and condom use. I'm just sayin'

Until they come out with a sho'nuf CURE.

THAT, my beloved ... will sho'nuf be a day to remember!!! Until then, I am:

  • Grateful for each day I am given
  • grateful to share my life ...
  • and my experiences.

... in the hopes that you don't have to share in my experiences.

  • Get tested
  • Know your status
  • Get educated
  • Educate someone else
  • Practice safe sex (abstinence/condoms)
  • If you are HIV+ and need to begin treatment, do so, without any "self-imposed drug holidays."
  • Love your doctor or find another one
  • Surround yourself with people who genuinely love and support you emotionally and spiritually.
  • Drop the shame, help erase stigma!
  • Think positive and LIVE

... and NOT necessarily 'in that order'.

hugs!

Send Pastor Andrena an email.

Read more of Is the Ribbon Enough?, Rev. Andrena Ingram's blog, on TheBody.com.

Get email notifications every time Pastor Andrena's blog is updated.

Read other articles in this spotlight series.



This article was provided by TheBody.com.
 
See Also
More Personal Accounts Concerning HIV Treatment

Reader Comments:

Comment by: Joyce McDonald (bklyn) Fri., Apr. 19, 2013 at 5:38 am EDT
Your article was truly inspiring, We have so much in common. This was a great interview I know who ever reads your story will be blessed and encouraged Go Sister you rock
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Comment by: andrena (Philadelphia, Pa) Sat., Apr. 20, 2013 at 11:56 pm EDT
Hey fellow Brooklynite! Used to work near Woodhull Hospital! We ALL rock...and we encourage one another! Thanks for reaching out!


Comment by: ILOVEYOUALL (The Cosmos) Thu., Apr. 18, 2013 at 5:34 pm EDT
I KNOW that mind set is everything. Whatsoever a man thinks...so I'm sure your positive outlook is also what helped you. Some people hear that diagnosis and accept it as a death sentence and some choose to fight for LIFE. The mind/body connection is SO important to healing so if you TELL yourself you are well, you WILL be well. People have been spontaneously healed from Cancer AND HIV...the mind is powerful people. it is your GREATEST defense, use it!! Peace and many blessings to you all!!
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Comment by: Gary (n.y.s) Tue., Apr. 16, 2013 at 8:34 pm EDT
Nicely written and everyone leans from each story that's told i know i do Your a inspiration

Gary
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Comment by: andrena (Philadelphia, Pa) Sat., Apr. 20, 2013 at 11:55 pm EDT
thanks Gary! I have many who were/are inspirations to me...just paying it forward!


Comment by: Dipuo (bethlehem, free state, ZA) Fri., Apr. 12, 2013 at 2:16 am EDT
thank you
i remember that day.
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Comment by: andrena (Philadelphia, Pa) Sat., Apr. 20, 2013 at 11:54 pm EDT
you are welcome! hugs


Comment by: Barton (Washington State) Thu., Apr. 11, 2013 at 2:43 pm EDT
I just got below 50 this month for the first time since my diagnosis in the summer last, when I went from a 50 thousand viral load to a few hundred, then steadily down and down until it was finally in a level that felt great. It truly is a memorable moment, and one to celebrate.
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Comment by: andrena (Philadelphia, Pa) Sat., Apr. 20, 2013 at 11:54 pm EDT
It IS wonderful!!! Keep up the good work. Those numbers are phenomenal!!!


Comment by: Keshaunia (Philadelphia) Sun., Apr. 7, 2013 at 4:45 pm EDT
My name is Keshaunia White and I did this monologue after hearing a few people's stories about living with HIV. I believe awareness is so important, especially in the African American community and amongst women. This is not a true story for me, but this is somebody's true story. GET TESTED, SAVE A LIFE.

https://www.youtube.com/watch?v=LjysCRYbSkw
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Comment by: andrena (Philadelphia, Pa) Sat., Apr. 20, 2013 at 11:53 pm EDT
Hi Keshaunia! thanks for reading, reaching out...and thanks for your video! Awareness is sooo important!!!


Comment by: Carlos (NC) Wed., Apr. 3, 2013 at 6:55 pm EDT
I truly enjoyed and related to your post. I can remember the day of my diagnosis as well as the day when I heard I was undetectable. While I have only been living with HIV for four years, I lost my first partner back in 1990. Unfortunately, I was that person who believed that I was in a committed relationship, but found out that was not the case. I have forgiven my ex-partner and made the choice to live and do what was necessary to have the best possible life with HIV. The virus does not define me nor does it limit me, but I have experienced the ignorance of others. I am most fortunate to have been diagnosed when meds were more user friendly (lol), but I am thankful for all of those that preceded and all of the researchers and great doctors and medical staff who treat us with the dignity and respect that we deserve. Best of luck with your book. I have contemplated writing one myself as I have had some life experiences that would rock most worlds. Thank you again for your post. Stay well, live true and long and prosper.
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Comment by: andrena (Philadelphia, Pa) Sat., Apr. 20, 2013 at 11:30 pm EDT
thanks Carlos!!!..and stop contemplating and WRITE THAT BOOK!!! hugs....*live true* (I like that). you too!


Comment by: lusue (TN) Sat., Mar. 30, 2013 at 11:24 pm EDT
Well said.
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Comment by: andrena (Philadelphia, Pa) Mon., Apr. 1, 2013 at 11:25 pm EDT
thanks for reading!!!! hugs


Comment by: Dave R (Amsterdam) Sat., Mar. 30, 2013 at 4:44 am EDT
Thank you for this post. Quite often in your writing you can really bring to life exactly how we feel at particular moments in our lives with HIV. That's a gift for people who are struggling to put it all together and struggling to make sense of what's happening, or has happened to them. Sometimes we need someone else to put a perspective on things and you do that perfectly.
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Comment by: andrena (Philadelphia, Pa) Mon., Apr. 1, 2013 at 11:25 pm EDT
thanks Dave! I love writing...and being as transparent as possible! Thanks for reading! Now, if I could only get my book done! Be well...be safe...hugs! pastor


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