Yes, road signs are different in South Africa, but today I'm talking about clinical signs. Signs and symptoms of an illness. Signs in our bodies that tell us something's not right. In first world countries, signs and symptoms of an illness are generally mild, and most people head to see their local family physician when they start to feel ill. Most of the time when a nurse or doctor documents how a patient felt at the start of their illness, those symptoms are vague and might include fatigue, loss of appetite or a low-grade fever etc. You might say those symptoms are "routine." A fever is usually routine with the flu. A rash is routine with chicken pox. You get what I'm saying.
Here? It's a whole other story. I've come to learn that there are no "routine" signs and symptoms with HIV. It's always something crazy that I've never seen before and it's always something I wouldn't expect. As far as my clinical skills go, I'm learning by leaps and bounds. While by no means would I ever want AIDS to advance as far as it does in many of our patients, it's a rare opportunity for me to learn from those cases and learn how to recognize symptoms early enough to prevent more serious side effects.
Fair warning, if you get quesy easily... this post isn't for you. For those of you who are passionate about medical care, or want to REALLY know what I'm doing in SA, here are a few examples of what I've seen lately.
Toxoplasmosis: Small parasites that reside in our body naturally are allowed to grow and take over a person's body when their immune system crashes, caused by advanced HIV. One of our very young male patients got toxoplasmosis in his brain, where parasites created holes or spaces in his brain that aren't supposed to be there. While most people with HIV are given a daily antibiotic called Bactrim to prevent toxoplasmosis, he was not. Many of our clients at Living Hope come to us as a last resort. We don't really know who diagnosed him or where he lived before, so it's hard to say why he did not get, or did not take the antibiotics. Although his condition has greatly improved with the addition of bactrim, he will likely live permanently with Parkinson like behaviors. He now has what are called "intention tremors" meaning his arms and legs shake when he tries to use them. As you can imagine eating, drinking and walking are very difficult with the residual tremors, but I assure you that a smile can still light up his face when his cute girlfriend and young child come to visit... which gives us hope.
Glandular occlusion from TB: When tuberculosis gets out of the lungs and into the lymph node system, the body's natural circulation is blocked by the TB and it can't drain excess fluid off of your body, causing your legs and arms to become very "edematous" or bloated. One young man who isn't responding to his TB treatment very well, has had to have constant drains placed in a lymph nodes to drain the excess fluid off. When the fluid collects, his swollen skin becomes very painful, particularly in the lower half of his body. I could see his spleen was swollen just by looking at his abdomen, his legs are three times the size of his upper body and other more private parts of his body were painfully swollen as well. You can imagine why he spends most days moving as little as possible and hiding his swollen legs under the covers. Thankfully we were able to get in touch with an infectious disease specialist who agreed to run some specialized tests on a sample of our patient's TB, so we are hopeful that we can find a treatment regimen that will start working soon. In the mean time? Lots of TLC and pain meds are doing the trick.
Oral Candida: Many conditions in HIV only happen when a person's immune system is too broken to resist bacteria. We call these "opportunistic infections" meaning that those types of infections only occur when they are given the opportunity to attack in a weakened immune system. One of our gentlemen came in with a raging opportunistic infection in his mouth called candida, or thrush. It had gotten so bad, that it actually grew out of his mouth, onto his lips and had eaten away parts of his upper and lower lips leaving him unable to eat, drink fluids or talk. Up until he started treatment, the open wounds where his lips used to be bled constantly, causing him to drip HIV positive blood everywhere he went. You can only imagine the social stigma and shame he experienced because of that. Thankfully we found a cheap and extremely effective solution that worked right away. Genetian Violet is a naturally occurring anti-septic dye with anti-fungal properties which means that once he put it on, it fought off the bacteria in his mouth, while his anti-retro viral drugs went to work restoring his immune system. It's done an amazing job of giving this man back his face and ability to eat. It kinda tattoos your whole mouth dark purple and stains everything it touches but it works!
And last but not least, the most complex thing I've seen. IRIS: Immune Reconstitution Inflammatory Syndrome. Most symptoms that humans have when we are sick are actually the result of our body responding to an infection, rather than being caused the infection itself. (IE) A fever is the result of your body trying to kill an infection. When HIV has wrecked a person's immune system, they don't really "fight" infections and therefore they don't usually have bad symptoms even though they have really bad infections. So there is this crazy thing that happens once people start on ARV's. They get much worse before they get better. With ARV treatment, immune function is restored, meaning that their immune system "wakes up" and starts to fight back, and the patient gets sicker! The viral levels of HIV go down, while the numbers of good cells go up. As the good cells go up, they start to recognize infection again and go to work causing fevers up to 106 degrees that can kill! So in this complicated system, we can only kill the HIV as quickly as the body can tolerate, or we have to find the infection and kill it as quickly as it shows up. It's a tricky science...
It's been a fascinating, infuriating journey. Fascinating because there is so much to learn, infuriating because there is so much I can't do anything about. Medical experts the world over will tell you that HIV and TB, as I'm seeing it, shouldn't happen. They will tell you that this disease is preventable and treatable. That both diseases could be eradicated. That no one should be this bad off.
But yet... here we are. Here they are. There are signs everywhere I look that something's not right.
Some days we make great breakthroughs and catch HIV infections before they get bad, patting ourselves on the back. Other days we are shocked when a seemingly well patient passes away without showing a single sign of sickness or uttering a single complaint.... and the sense of great urgency overwhelms us all.
Sometimes it feels like these aren't my stories to tell, but they might never get told otherwise.
The stories of millions living and dying with a preventable disease.
I'm telling you so that you can understand what it is that I do everyday. Why it is that I have to be here. Why I love it here so much. Why Living Hope needs me. Why I love these people so much. Why I feel so strongly about preventing HIV/AIDS. Why I feel that I have to act.
So you can know. So you can act in your own way. So you can tell stories too.
