Treatment is highly individualized and specific to each person living with HIV or AIDS. Treatment decisions are based on many factors, including, but not limited to: preexisting conditions, CD4+ levels, viral load levels, potential drug interactions, potential side effects, drug resistance testing, adherence potential, pregnancy or pregnancy potential, and convenience (pill burden, dosing frequency, food and fluid considerations).
For many years, treatment has been recommended for those people whose CD4+ drops below 350. In the past few years, there has been a shift to a recommendation for treatment for anyone whose level drops below 500. Now, in very recent years, many physicians are again shifting to say that it may be most beneficial to start treatment immediately after HIV diagnosis for all, regardless of CD4 levels. The jury is still out on this though, and it is not yet the official recommendation.
Now, with my situation, things were a bit different. Because I went through acute seroconversion and received a diagnosis within one month of being infected, I am a bit of a rare case. And with that comes some more not so clear/concrete recommendations about treatment. Basically, it is "thought" (and currently being researched) that if one can catch and attack the virus with treatment during such an early stage, there may be some extra benefits.It may help to establish a higher CD4 set point and get to an undetectable viral load quicker. It may also prevent the virus from getting down into some of its deepest darkest hiding places. It may prevent some of the inflammation and damage to organs that can happen in the first few months of infection. The one obvious disadvantage is just that you start on treatment right away and are on it for the rest of your life.
After researching and talking to doctors for about a week, I made the very difficult decision to go ahead and start treatment. We discussed drug regimen options, but I kind of knew all along (from my research) what I wanted. We chose Atripla- the number one recommended and preferred treatment currently available. Atripla is a combination of three medicines in 1 pill. Efavirenz/Tenofovir/Emtricitabine (EFV/TDF/FTC). It is a 1 pill a day solution- effective, convenient, and damn expensive!
After 1 week on Atripla, I had noticed some of the side effects, but nothing too serious. Just a little bit of drowsiness or drunken feeling. But, by the end of my first month taking it, I no longer felt those side effects. Most peoples bodies will adjust to the medicine and overcome the minor side effects.
Picking up the meds at the pharmacy and preparing to take that first pill was definitely one of the hardest days so far. It made it REAL. As my therapist reasoned, "It's been real all along, but invisible. You know you are changed. You know you have this virus inside of you. But you can't see it. You can't touch it. But a pill is real. It is the real physical manifestation of this disease that you'll have for the rest of your life." And the pill is going to be there everyday to remind you of that!
I dreaded taking that first pill. I sat with my roommate and said "Should I take it? Should I not?"- holding it in my hand and bringing it to my mouth, but then back down again. Finally, I popped it in and swallowed. You just have to do it. No going back. There is only forward.
To make my nightly ritual easier, my roommate helped me decide on a time (10:00pm)- and I set a daily alarm on my phone. We listened to every ringtone available and picked the one that made us laugh and put us in a good mood. It is called "Growl" and I have no idea what it means. But for now, it fits.
My advice if you are trying to make a decision about treatment: Research. Read. Listen to your doctors. But know your stuff too. Don't go with something you are not comfortable with. This is your life. This is your body. YOU must decide what is best for it. Make your decision and stick with it. There is no going back. There is only forward.
I am 28. White. A Female. And a former Peace Corps Volunteer. I am HIV Positive. This is my story of how a few months, a few people, and a few events in Zambia changed me and my life forever. This is the story of how I contracted HIV and brought my Peace Corps Journey to a crashing halt... and how I am working now to pick up and put back together the pieces of my life as a newly diagnosed person living with HIV. This was not the journey I had originally planned... my path has traumatically and dramatically changed... but it is the one I am on now. There is no going back. There is only forward. I welcome you to follow along with me as I attempt to explore this new life ahead of me, whether you are someone from the Peace Corps community, or someone living with HIV. I welcome your comments, questions, suggestions, and opinions. Let us go forward together. To start from the beginning, click here He Gave Me More Than A Bracelet.
Saturday, December 31, 2011
Life As A Medevac in D.C.- Part 2
As my physical strength started rebuilding, my morale did too. I received a roommate (who was awesome). I started going to counseling in the PC Office (which was awesome). I made friends with other medevacs and even got to participate in a few of the Peace Corp’s 50th Anniversary celebrations in D.C. (Woohoo!). We dressed in native garb and carried country flags onto the field before a baseball game. We also went to a PC Memorial service at Arlington . And we did a little exploring of D.C. (museums, monuments, and such).
I also went back to more doctor appointments, at which point we decided to start on treatment. (I’ll re-post my treatment information as a separate post for anyone who has not clicked on the tab). I started my pills. Shortly after, I had an allergic reaction and broke out in an itchy rash all over my body, which lasted for a week or more. I also experienced a few of the typical side effects and had a few tipsy (due to the medicine, not alcohol) late night conversations with my roommate. I may have experienced some of my first feelings of discrimination, and broke down crying after the pharmacist was not so nice to me. I spent hours on the phone and in the office with my PC health coordinator trying to get issues with insurance and other stuff dealt with. I hung out with other medevacs and continued to struggle as I lived a lie and awkwardly told them that I had a mystery illness (sorry guys). We had fun nonetheless, with our hotel dinners and Extreme Couponing, Hillbilly Handfishing, and Halloween Wars marathons. We made friends with Africans in D.C. that showed up in random places (restaurants, taxis, pharmacies, hotel hallways). Oh, and I even learned how to take the subway!
It all seemed to be quite the adventure at first, although I did start tiring of my life in the hotel towards the end. I was also becoming more and more stressed about leaving the “shelter” of PC care and being officially separated and sent off on my own. There were a lot of decisions and preparations to be made, including choosing a place to live, finding doctors, filing FECA paperwork, attempting to communicate with Zambia about my belongings, etc. And I have to admit to getting frustrated with PC at times, because some things just seemed as if they could have been made easier or smoother...
Wednesday, December 28, 2011
A Note About Acute HIV Infection
Acute HIV Infection is a very important, yet little known and heard about, part of HIV and the tragedy of HIV transmission.
Acute Infection describes the stage of HIV which usually occurs between 2-4 weeks after the contraction event, although it sometimes may take longer. During this stage, the body has yet to recognize and start fighting the virus, therefore allowing the virus to rapidly increase and attack the body. The result is certain flu like symptoms, including headache, fever, loss of appetite, rash, diarrhea, vomiting, etc. However, in most cases, just as symptoms begin to appear, the body finally recognizes the virus, develops antibodies against it, and naturally starts fighting it. Therefore, most people who experience symptoms of Acute HIV Infection think they have the flu. They might feel down for a few days, and then the symptoms resolve on their own, and the person moves on with their life--- never knowing or finding out that they have just contracted HIV. Furthermore, many doctors are not trained or prepared to recognize symptoms of Acute Infection, or they simply mistakenly believe that the patient just has the “flu”, without ever considering doing an HIV test. Finally, if a rapid HIV test is for some reason done during this period, it may come back Negative, as the test is testing for antibodies which the body has not yet produced! Long story short, it is very uncommon for HIV to be found and diagnosed during the Acute Infection phase.
Now, what makes this worse is the effect of this phenomenon on transmission. You see, when a person is in the Acute phase or newly contracted, their body has not had a chance to fight the disease, and their viral load is likely to be very high. The higher a persons’ viral load, the more infectious they are, and the easier it is for them to transmit the virus to others. So, pair a high viral load with a person that has no idea that they’ve contracted the virus, and you have a very dangerous thing. Reports estimate that as many as 50% of HIV transmissions occur during the acute and early stage of the illness.
Now, to connect this with my story- I went through an extremely severe case of Acute HIV Infection. I experienced almost every symptom on the list, but to a higher degree than most. My symptoms began exactly 17 days after contraction, which falls in that average 2-4 week period. My first two HIV tests came back Negative also, because my body had not yet developed the antibodies. In addition to these typical symptoms, my platelet levels were extremely low, and my liver functioning was extremely high (this means bad). This is why I was hospitalized and this is why they found it. My first results showed my CD4 (immune system) was very low, and my viral load was over 10 million (the maximum measurement range). Although it was a horrible experience to be so severely ill, it is a good thing that I was, otherwise we may have never found it, and I could still be in Zambia , and possibly passing it along to others.
Another part of the puzzle…
I had asked the guy before being with him if he had been tested for HIV. He said he had been tested earlier in the year and it was Negative. He neglected to mention, and I neglected to find out, that he had slept with someone after that Negative test (which therefore really makes me asking him at all pointless and void).
I further questioned him about this while I was in South Africa (after being diagnosed), and I also explained the Acute Infection to him. And it all of the sudden clicked and he said, “Oh my gosh. I did get sick with the flu or Malaria a couple weeks after being with that girl”. I said, “BINGO”, and we knew that that had been it.
So, we are a perfect example. He had been recently infected, may have experienced symptoms, but mistook them for Malaria, and never suspected HIV. His viral load was most likely still very high when he met and passed it on to me. The doctors agree that this is most likely the case, as they feel that his viral load must have been extremely high to infect me through the low risk activities that we participated in.
In an e-mail from October, I wrote to a Peace Corps HIV Educator… “One last thing that I think you could talk about more is Acute HIV Infection- including the timing (1-4 wks after infection), and the common symptoms. This is something I feel like I never knew about. I didn't know before that people commonly fall sick with flu like symptoms about 2 weeks after infection. And most people don't know this, and they ignore it, thinking they have the flu, and then they don't ever consider or find the HIV. We are told to look at sexual partners and consider whether they "seem sick" or if they have any sores or cuts on their genitalia. But, I think a better suggestion would be to ask our partners if they have had any flu or malaria-like illnesses recently (or if you want to get real specific- shortly after being with their last partner). If I had known this information and asked my partner about it, he would have told me that yes, actually he did have malaria like symptoms a couple weeks after being with his previous girl (5 months ago). And I could have known to be suspicious right there with that information.”
I am not saying that everyone should freak out if they get the flu, however I do think that this part of HIV needs to be talked about more, so that people are familiar with the pattern of the disease progression, and may be more likely to recognize the symptoms. As always, thanks for listening!
P.S. I will continue the Medevac story tomorrow...
Monday, December 26, 2011
HIV 101
I would very much like to continue my story from where I left off, but I felt that I first have an obligation to get some facts and information on here to answer some of the questions that people may have about HIV. Therefore, I spent some time today getting down the basics. Please take some time to read through the questions and answers I have posted, even if you think you already have the knowledge. In addition PLEASE PLEASE contact me if you have any questions of any sort, and I will take the time to answer them the best I can. Thanks!
· What is HIV?
o HIV stands for Human Immuno-deficiency Virus. It is a virus that can only infect human beings. HIV reproduces by taking over human cells and attacking the body’s immune system.
· What is AIDS?
o AIDS stands for Acquired Immune Deficiency Syndrome. AIDS is a condition that someone acquires or is infected with. AIDS makes the body’s immune system deficient (makes it not work properly). When the immune system does not work properly, people with AIDS may be vulnerable to a number of different diseases and opportunistic infections.
· What is the difference between HIV and AIDS?
o Someone is said to have HIV or be HIV+ if they have been infected with the HIV virus. This means that the HIV virus is living in their body. People with HIV may or may not have any symptoms of the infection. HIV is the virus that causes or leads to AIDS.
o Someone is diagnosed with AIDS when the HIV virus in their body causes their immune system to be compromised. This is measured by the CD4 Count and/or the presence of Opportunistic Infections. A person is diagnosed with AIDS when their CD4 count goes below a 200 level or if they experience one or more Opportunistic Infections.
· What is the CD4 Count?
o CD4 Cells are a type of white blood cells that fight infection. They may also be called T-Helper Cells. HIV damages a person’s CD4 Cells. A normal CD4 count is from 500 to 1,500 cells per cubic millimeter of blood. A low or decreasing CD4 count means that the person’s immune system is weaker, and they may be more likely to get sick. A higher CD4 count means that a person’s immune system is stronger.
o When a person’s CD4 count falls below 200, they are diagnosed with AIDS and may be more likely to develop opportunistic infections.
· What are Opportunistic Infections?
o When a person’s immune system is compromised, they may become more vulnerable to certain infections. These are called 'opportunistic infections' because they take advantage of the opportunity offered by a weakened immune system.
o Some of the most common HIV related opportunistic infections include: Bacterial diseases such as tuberculosis, MAC, bacterial pneumonia and septicemia (blood poisoning); Protozoal diseases such as toxoplasmosis, microsporidiosis, cryptosporidiosis, isopsoriasis and leishmaniasis; Fungal diseases such as PCP, candidiasis, cryptococcosis and penicilliosis; Viral diseases such as those caused by cytomegalovirus, herpes simplex and herpes zoster virus; and HIV-associated malignancies such as Kaposi's sarcoma, lymphoma and squamous cell carcinoma.
· What is the Viral Load?
o Viral load is the term used to describe the amount of HIV in your blood. The result of a viral load test is described as the number of 'copies' of HIV RNA per milliliter (copies/ml). The more HIV in your blood, the faster your CD4 cells (immune system cells that fight infection) reduce, and the greater your risk of developing symptoms in the next few years.
· Is there a cure for HIV/AIDS?
o Although there have been many advances in HIV treatments and therapies in recent years that have dramatically improved the quality of life and life expectancy of persons with HIV/AIDS in the US and other developed countries, there is, as of yet, no cure.
o Very recently there has been one confirmed case of an HIV patient Timothy Brown being “functionally cured” of the virus.
· How is HIV transmitted/contracted/passed/spread?
o HIV can be transmitted from an infected person to another through:
§ Blood (including menstrual blood)
§ Semen
§ Vaginal secretions
§ Breast milk
o Blood contains the highest concentration of the virus, followed by semen, followed by vaginal fluids, followed by breast milk.
o These specific fluids must come in contact with a mucous membrane or damaged tissue or be directly injected into the blood-stream (from a needle or syringe) for transmission to possibly occur.
o The following are additional body fluids that may transmit the virus that health care workers may come into contact with:
§ fluid surrounding the brain and the spinal cord
§ fluid surrounding bone joints
§ fluid surrounding an unborn baby
· What activities CAN spread HIV?
o Unprotected sexual contact (including vaginal intercourse, anal intercourse, or oral sex)
o Direct blood contact, particularly through sharing injection drug needles.
o Infections due to blood transfusions, accidents in health care settings or certain blood products are possible, although they are extremely rare nowadays in the United States.
o Mother to baby (during pregnancy, during birth, or through breast milk)
o There is a remote risk from deep, open-mouth kissing if there are sores or bleeding gums and blood is exchanged.
o There is a remote risk of transmission by human bite. All documented cases where transmission did occur included severe trauma with extensive tissue damage and the presence of blood.
· What activities DO NOT spread HIV?
o The following "bodily fluids" are NOT infectious:
§ Saliva
§ Tears
§ Sweat
§ Feces
§ Urine
o HIV is not transmitted by day-to-day contact in the workplace, schools, or social settings. HIV is not transmitted through shaking hands, hugging, or a casual kiss. You cannot become infected from a toilet seat, a drinking fountain, a door knob, dishes, drinking glasses, food, insect bites, or pets.
o HIV is not an airborne or food-borne virus, and it does not live long outside the body.
· How can transmission of HIV be prevented?
o Abstain from sexual intercourse or be in a long-term mutually monogamous relationship with a partner who has been tested and you know is uninfected.
o Latex condoms, when used consistently and correctly, are highly effective in preventing heterosexual sexual transmission of HIV.
o Never reuse or "share" syringes, water, or drug preparation equipment. Do not share other tools that may come into contact with blood, such as razors.
o Get tested and know your status. Make sure your partner(s) are tested and know their status.
o Follow guidelines to prevent Mother to Child Transmission.
· What is Acute HIV Infection?
o Primary or acute HIV infection occurs 2 - 4 weeks after infection with the human immunodeficiency virus (HIV). Acute HIV infection can appear like infectious mononucleosis, flu, or other viral illnesses. If symptoms occur, they are usually seen 1 - 4 weeks after becoming infected. These symptoms can last from a few days to 4 weeks, and then subside. Any of the following symptoms can occur:
§ Decreased appetite
§ Fatigue
§ Fever
§ Headache
§ Malaise
§ Muscle stiffness or aching
§ Rash
§ Sore throat
§ Swollen lymph glands
§ Ulcers of the mouth and esophagus
o Symptoms may be subtle or non-existent in many people infected with HIV, and it is therefore uncommon for HIV to be recognized and diagnosed during the Acute Infection period.
· What is the treatment for HIV?
o Antiretroviral therapy (ART) is the recommended treatment for HIV infection. ART involves taking a combination (regimen) of three or more anti-HIV medications daily. ART prevents HIV from multiplying and destroying infection-fighting CD4 cells. This helps the body fight off life-threatening infections and cancer. Although anti-HIV medications can’t cure HIV, people with HIV are enjoying healthy lives and living longer thanks to ART.
· Can treatment prevent HIV from advancing to AIDS?
o Yes! Treatment with anti-HIV medications prevents HIV from multiplying and destroying the immune system. This helps the body fight off life-threatening infections and cancers and prevents HIV from advancing to AIDS.
· When should someone start on treatment?
o Even though you have HIV, you may not need to start treatment right away. When to start anti-HIV medications (also called antiretrovirals) depends on several factors, including:
§ Your overall health
§ How well your immune system is working (CD4 count)
§ The amount of HIV in your blood (viral load)
§ Whether you’re pregnant
§ Your ability and willingness to commit to lifelong treatment
o It’s time to start treatment if:
§ Your CD4 count is less than 500 cells/mm3
§ You have AIDS
§ You’re pregnant
§ You have HIV-related kidney disease
§ You need treatment for hepatitis B virus (HBV)
· What treatments are available?
o The best combination of anti-HIV medications for you depends on your individual needs. Factors that you and your health care provider will consider when selecting your HIV regimen include:
§ Other diseases or conditions you may have
§ Possible side effects of anti-HIV medications
§ How anti-HIV medications may interact with other medications you take
§ Your drug-resistance testing results
§ Complexity of the regimen—how many pills to take every day and how often, and if pills must be taken with or without food
§ Any personal issues that may make following a regimen difficult (such as depression or alcohol or drug abuse)
· Are there side effects?
o Anti-HIV medications can cause side effects. Side effects vary depending on the anti-HIV medication. And people taking the same medication may not have the same side effects. Before starting treatment, discuss possible side effects with your health care provider or pharmacist.
o Most side effects from anti-HIV medications are manageable. However, side effects that become unbearable or life threatening call for a change in medications. Side effects that may seem minor, such as fever, nausea, fatigue, or rash, can indicate serious problems. Once you start treatment, always discuss any side effects from your anti-HIV medications with your health care provider.
· What does it mean to have an Undetectable Viral Load?
o The amount of HIV in your blood is so low that a viral load test can’t detect the virus. However, having an undetectable viral load doesn’t mean you’re cured. You still have HIV. And although having an undetectable viral load reduces the risk of HIV transmission, you can still infect another person with the virus.
· What is Adherence?
o Treatment adherence means adhering to (following) your treatment regimen—taking the correct dose of each anti-HIV medication at the correct time and exactly as prescribed. Adherence is very important for successful HIV treatment.
· What is Drug Resistance?
o Drug resistance develops when the virus mutates (changes form), becoming “resistant” to certain anti-HIV medications. One or more anti-HIV medications in a treatment regimen can become ineffective as a result of drug resistance.
o Skipping medications makes it easier for drug resistance to develop. HIV can develop resistance to the anti-HIV medications in a person’s current regimen or to other, similar anti-HIV medications not yet taken, limiting options for successful HIV treatment. And drug-resistant strains of HIV can be transmitted to others, too.
· What is PEP?
o PEP is short for Post-Exposure Prophylaxis and is the use of antiretroviral drugs as soon as possible after a high-risk exposure to HIV, to reduce (but not eliminate) the possibility of HIV infection. PEP is not the morning after pill for HIV. PEP is a four-week program of two or three antiretroviral medications, several times a day. The medications have serious side effects that can make it difficult to finish the program.
o Treatment should be started promptly, preferably within the first several hours after an exposure. It should be administered within 48 hours of a high-risk exposure (not to exceed 72 hours). After 72 hours PEP is considerably less effective in preventing HIV infection. The sooner PEP is administered, the more effective it is.
· What is PrEP?
o PrEP is short for PreExposure Prophylaxis and may be part of comprehensive HIV prevention services in which HIV negative people who are at high risk, take antiretroviral medication daily to try to lower their chances of becoming infected with HIV if they are exposed to it. To date, PrEP has been shown to be effective in men who have sex with men (MSM) and heterosexual men and women. A CDC study is also underway to evaluate whether it is safe and effective in reducing HIV infection among injection drug users, but those results are not yet available.
· What kind of life can a person with HIV expect to have?
o An HIV diagnosis is not a death sentence. Treatment is highly effective and a person with HIV can expect to live an almost normal life. Just because someone is diagnosed with HIV does not mean that they will be sick, dying, or restricted from any normal activities in life that others have.
· Can someone with HIV have a relationship with someone who doesn’t have HIV?
o Yes. HIV+ people do not have to only date other HIV+ people. Up to fifty percent of people living with HIV who are in relationships are estimated to be part of discordant couples, where one partner has HIV and the other has not.
o Through safe sexual practices discordant couples can have healthy relationships and remain discordant.
o Furthermore, studies have confirmed that taking antiretroviral drugs and maintaining an undetectable viral load reduces a HIV+ person’s risk of transmitting the virus to HIV- partners by 96% among heterosexual couples.
· Can someone with HIV have a baby?
o Yes. HIV+ women can have healthy and HIV- babies without complications. There are specific regimens of drugs and guidelines that pregnant women should follow to prevent transmission to their babies. When following recommended guidelines and treatments, risk of mother to child transmission is very low.
o An HIV+ man can have his sperm “washed” of HIV and then implanted into his HIV- negative partner in order to conceive safely.
· Can someone with HIV get a job?
o Yes. People living with HIV can have and perform any job that others can.
o HIV+ people are not required by law to disclose their status to employers and are protected from discrimination in the workplace and other settings by the Americans With Disabilities Act.
· Do people with HIV have to disclose their status to anyone?
o People with HIV are not required by law to disclose their status to anyone other than their sexual partners. Each state has different laws about disclosure to sexual partners.
o Furthermore, HIV+ people have the right to confidentiality in all settings. It is ILLEGAL for someone to disclose the status of another person without their permission.
Saturday, December 24, 2011
I Have Nothing To Be Ashamed Of
After launching this blog to the Peace Corps community only a few days ago, I am overwhelmed and overjoyed by the number of readers and positive responses I’ve received. Sharing my story in this way has lifted a burden off of my heart and given me a freedom and joy that I have not felt in months. As I’ve experienced the power of sharing my story to pure strangers, it has given me the courage to take the next step and now share my story with my family and friends. I cannot hide this any longer. I am who I am, with or without this disease. In the words of one of my wise new HIV+ friends, “I have nothing to be ashamed of.”
Thank you all for your continuing love and support. Happy Holidays!
Friday, December 23, 2011
Life As A Medevac in D.C.- Part 1
Did you ever spend 36 days living in a hotel? I did.
I arrived to D.C. and took a shuttle from the airport to the hotel. I had never been there before. I had no idea what D.C. was going to be like. I had no idea what the hotel would be like or Peace Corps Headquarters or any of it. PC South Africa had given me no information about what life would be like as a Medevac in D.C. I was scared out of my mind.
Well, I pulled up to a nice looking hotel and was dropped out front. I checked in and went up to my room. The hotel staff said that there should be a roommate waiting for me. I opened the room door and found no one. But, I did find empty boxes and bags and trash all over the place. Don’t get me wrong, the room was amazing! It was a full suite with a kitchen, bathroom, living room, and bedroom… but why was there all this junk laying around? I snooped around a bit and still couldn’t quite figure out if there had been a roommate staying there or not. Eventually, when no one else came home that night, I decided that there must not be a roommate and all that stuff was just trash left behind. I had a cleaning spree the next morning.
The next day I walked the 10 blocks or so to PC Headquarters and met my International Health Coordinator. We discussed my case and went over some paperwork. I received my stipend for the next week. Then, they sent me off in a taxi to my first Doctor’s appointment.
My appointment was about 4 hours long. I told my whole story to the team of doctors. They reviewed my chart and records and checked me out. Then they talked to me about my options for treatment. I decided not to start treatment right away, as I needed some more time to research and think about it. They did however prescribe me an antibiotic to take to prevent PCP (a certain kind of pneumonia that HIV+ people are prone to when their CD4 drops under 200). I was then sent to the Lab for more blood to be drawn. Finally, they had me meet with the team of Social Workers in the clinic and I once again reiterated my whirlwind of a story.
When the appointment was finally over, I walked, or rather wandered, my way back to the hotel and slept for at least 15 hours straight. The next few days were a blur, but I met with different people in PC Headquarters, and slept, and met some other Medevacs, and slept some more. My body was still in pretty rough shape and recovering from the initial Acute HIV Infection or Seroconversion (which I’ll have to explain in another post).
Thursday, December 22, 2011
The Flight Home...
I couldn’t believe I was already on a plane back to America . This wasn’t supposed to happen for another 19 months. How the hell did I get myself here? I sat there waiting for the plane to take off… staring out the window at my last glimpse of Africa . All around me people were chatting happily about their trip to the U.S. , as I sat there with tears welling up in my eyes.
Goodbye Africa . Goodbye village. Goodbye coworkers. Goodbye friends. Goodbye Peace Corps. Mission Failed.
The First Few Days...
I laid in the hospital bed in South Africa in pure and complete loneliness and silence. I had no phone (my phone from Zambia did not work in South Africa). I knew no one. I had no connection or communication with the outside world. I stared at the wall. I slept. I did Sudoku and Crossword Puzzles. I listened to the sick old lady in the bed next to me beg for suppositories and bed pans. I forced as much food into my body as I could, which still wasn’t much. I got up and went to the bathroom every 30 minutes. I let them poke and prod and draw my blood at least two or three times a day.
The Peace Corps doctors visited me at the hospital once a day. We called my mom. We discussed my options.
1) Stay in South Africa and continue care on Medevac status until we decide what comes next.
2) Fly to Washington, D.C. and receive care from medical doctors and Peace Corps Headquarters staff on Medevac status until we decide what comes next.
3) Fly directly home to my Home of Record.
Eventually, we (Peace Corps, me, and my family) agreed that the best option was to fly to Washington, D.C.
I was discharged from the hospital and transferred to the Medevac Guest House in South Africa for the weekend, until they could get me on a flight back to the United States. At that point I got a South African SIM card for my phone and was finally able to communicate with people in Zambia and the U.S. again. I was still pretty sick though, and spent most of my time in bed, and trying to avoid telling the other Medevac volunteers what was wrong with me.
I communicated with the guy from Zambia. And as can be expected, he was shocked and confused, and responded with, “I don’t understand how you can think you got it from me? We used condoms, didn’t we?” And I said, “Yes, we did. But somehow it still happened. The doctors think it must have come from the unprotected oral sex. You are the only one I’ve been with, so it has to be you. You need to go get yourself tested.” At that point he became really scared and refused to go get tested because of fear. He continued to support and check on me though.
Wednesday, December 21, 2011
Punishment
A poem I wrote during the first weeks after diagnosis...
Is this my punishment?
For all of my judgment?
For all those years
that I looked at girls,
thinking, "Gosh, what sluts."
How can they always sleep around?
A constant rotation of hook-ups and going outs.
I'm better than that.
I'm not promiscuous.
I've only had 2 boyfriends ever-
Okay, let me add 1 more and make it 3.
But look!
Now it's me that has HIV.
I listened to their stories and banter,
listing different guys each night of the week...
"I even did one in the back of a canter!"
I silently scoff and roll my eyes.
Thinking, "These girls are gonna get sick."
But No...
It's me that HIV picked.
I hear them admit that they're not always safe.
I think, "Gosh, how could they?"
But I sure hope they'll be okay.
Later on, I use my condoms.
I'm smarter than them.
I'm safe.
But Wait...
something goes wrong
and somehow it's me that has the + test come along.
How? Why?
There's no clear answers.
Only that...
This must be my Punishment.
For all of my Judgment.
Is this my punishment?
For all of my judgment?
For all those years
that I looked at girls,
thinking, "Gosh, what sluts."
How can they always sleep around?
A constant rotation of hook-ups and going outs.
I'm better than that.
I'm not promiscuous.
I've only had 2 boyfriends ever-
Okay, let me add 1 more and make it 3.
But look!
Now it's me that has HIV.
I listened to their stories and banter,
listing different guys each night of the week...
"I even did one in the back of a canter!"
I silently scoff and roll my eyes.
Thinking, "These girls are gonna get sick."
But No...
It's me that HIV picked.
I hear them admit that they're not always safe.
I think, "Gosh, how could they?"
But I sure hope they'll be okay.
Later on, I use my condoms.
I'm smarter than them.
I'm safe.
But Wait...
something goes wrong
and somehow it's me that has the + test come along.
How? Why?
There's no clear answers.
Only that...
This must be my Punishment.
For all of my Judgment.
He Gave Me More Than A Bracelet. He Gave Me HIV.
I was sitting and cuddling with him on the couch. I admired his bracelet. He took it off and slipped it onto my wrist. I remember feeling special. I thought to myself, "How sweet. He likes me. He gave me his bracelet." Turns out that later that night he gave me something more than a bracelet... he gave me HIV...
The beginning...
After 7 months in country (serving as a Peace Corps Volunteer) I was already changing. The Peace Corps tends to do that to people. I had made new friends- both Americans and Zambians. I had gone through many ups and downs in the village and my workplace. I had learned the culture and the language. I had felt the homesickness and loneliness that only volunteers can know. And I had experienced the constant admiration and proposals from Zambian men. Those 7 months had been a challenge for sure, but overall I was enjoying my experience. I was enjoying my village, my work, my friends, and of course all of the extra romantic interest and flattery. And although I did not enter into my Peace Corps service actively seeking out a relationship, when a person is so far from home and living alone in a village that seems so far removed from everyone and everything else, companionship is something that becomes more and more desirable.
I met him while on a trip in the capital city. He was a friend of a friend of a friend. The first night that I met him, we all went out dancing together as a group. I spent the whole night dancing, talking, and eventually kissing with him. At the end of the night we exchanged phone numbers and went our separate ways.
In the following days, we texted and talked on the phone. He seemed like a pretty okay guy. He even paid me a surprise visit one evening where us volunteers were staying. We just sat and talked for about an hour. Later in the week, he invited me over to his place for dinner. I went to his apartment. He cooked for me. We watched TV. We cuddled. I slept over. I spent the whole night telling him NO and resisting the urge to have sex. In an attempt to calm and satisfy his desires and needs, I suggested, and later performed oral sex on him.
We talked the next day and he invited me over again. We picked up some food for dinner and then went back to his apartment. We laid and cuddled on the couch for a long time. He gave me his bracelet. We eventually made it into the bedroom again, and thus started another night of strained fooling around and NO's. I gave him oral sex again. But, as the night went on, and either my hormones or loneliness wore me down, I finally gave in. I said YES. We then had sex. We used condoms.
The next day I had some mixed feelings, but I didn't totally regret it. I thought, "You know what? Why can't I have sex with someone? Everyone else seems to be doing it. This isn't such a big deal. This doesn't make me a bad person." (I forgot to mention that this was and is the only time in my life that I've had casual sex with someone who I am not in a long term relationship with).
After I left town a day later, we kept in touch. We texted and chatted on the phone. He wanted me to be his girlfriend. I needed some time to think about it. I continued to wear his bracelet.
Fast forward to exactly 17 days later...
I was in my village. I got sick. We thought it was Malaria- all the symptoms seemed to fit. I was brought back into the capital city for medical care. They couldn't quite figure out what was wrong with me. It wasn't Malaria, and it kept getting worse.
Ironically, he came to visit me. He took me out for coffee and we sat and talked. He bought me juice and bananas. He was still a nice guy.
The next day my symptoms got more severe and I was hospitalized. In addition to many other tests, they did two separate HIV tests. It was just a precaution. Based on my sexual activities, no one thought it would be likely for me to get HIV. The tests both came back Negative.
They still didn't know what was wrong with me, so the next step was to medically evacuate me to South Africa. I was immediately hospitalized there, and additional tests were performed, including another HIV test. It came back Positive.
Two Negatives. One Positive. Test again, wait a day. Positive. Final confirmatory test, wait a day. Positive.
That was it. No going back. No chance of mistakes or false positives now.
I was shocked. The doctors were shocked. I had one evening of protected vaginal sex. We used condoms. The condoms didn't break. I had unprotected oral sex twice. I didn't have any known open sores or cuts in my mouth. But, somehow I had still contracted HIV.
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