New game

Today I had my first day in leprosy outpatient. I’m shadowing Dr. Bhaskarao, who is in his later 60s I would guess, and has a very fun personality. He is short, round, wears wire-rimmed glasses and has a white mustache. I think he feels cool having me follow him around and ask a million questions. He is very patient with me, a good teacher, and loves to tell everyone “this is my assistant. She is from America.”

Leprosy outpatient is unlike anything I’ve ever experienced of medicine in the states. The patients shuffle in and produce pressure ulcers ranging from the size of a quarter to the size of my fist. Most of them are kind of green and oozy (ack! gangrene!), while others are dry and resemble holes. The ulcers and infections are not painful. In fact, the lack of feeling caused by the nerve damage is really the reason they get so many ulcers to begin with (but if you read “the crash course” post about leprosy, you already knew that).

Dr. B. showed me how to properly palpate the ulnar (near the elbow) and common peroneal (near the knee) nerves to see if they were thickened. He also showed me how to test for anesthesia, which is the very complex process of poking the patient with a pen and asking, “can you feel that?” Many of the ulcers are treated with oral and cream antibiotics, and dressed in sterile bandages. Some need to go for debriding surgery, and those patients get admitted to the ward. I have photos of some of the more gnarly ulcers which I will not post, as they are pretty grotesque. I can certainly produce them by request if you are interested.

The nerve damage also affects the muscles. About 20% of leprosy patients experience either “claw hand” or “drop foot.” In clawing the fingers curl downward, but the palm remains open and the hand freezes in this position. A reconstructive surgery of tendon grafting can straighten the fingers and place them at an angle with the thumb to that the patient can feed his or herself, work, or even drive. In drop foot, the muscles behind the ankle contract, and the resulting position is a pointed foot. As you can imagine, this patient’s mobility is severely compromised. Reconstructive surgery, along with special boots (which are manufactured on the compound) can allow this patient to walk again. Its pretty amazing.

In some ways, working in leprosy is easier than working in HIV. While the images in leprosy are certainly more striking (deformities, ulcers etc) there is a lot that the doctors can do to help treat the patient. Some days in HIV I want to beat my head against the wall, because all we can do is treat symptoms, work against opportunistic infections, and try and prolong a patient’s life. Its certainly an uphill battle. Not to say that leprosy isn’t, but its definitely a nice change of pace.

While I was in the ward, the phone rang. A nurse popped her head into the office, and gestured that the phone was for me. Me? Who is calling me? “Hello?” I said.

“Hello” an unmistakably American voice answered! “This is Jann, I was calling to let Dr. Hrishikesh know that I am coming tomorrow at 11am to see the children.” I almost dropped the phone. I couldn’t believe how much I had missed the sound of my own language. Here I was, talking to a fellow countrywoman!

“Hi Jann” I said back, trying to sound professional, casual, and to contain my excitement. “I will let Dr. Hrishikesh know. I’m new here at Sivananda, and would like to meet up with you tomorrow as well, if that’s okay.” From there I explained my connection to SRH and found out that she is living in Hyderabad with her husband, who is here on business, and her daughter for a year. They are from Seattle. I am very excited to meet her tomorrow.

After work, I went to go play with the children–which is always the bright spot in my day. Even though we don’t speak the same language, we are communicating pretty well. Two of the girls speak English, and the rest of the children pick up on what I am saying very quickly. Its fun to learn each child’s very definitive personality. Children are children no matter where in the world they live, or background they come from. Some of the kids are leaders, some are shy. Some are competitive, while others are very creative. Each one is different than the next, but they are all really awesome.

The children were a little burnt out on “goats and tigers” today, which is reasonable because we have been playing it everyday. (Its hard to describe rules of different games, so we’ve been sticking to what we know.) Today, however, I gathered the kids around and said, “ok guys, its time for a new game.” They repeated after me, “New game.” And murmured among themselves, ” new game.” I never know if they are repeating me because they understand me, or if they are just trying to encourage me by saying whatever I am saying.

So I taught them duck-duck-goose. They are so cute, and they did really well. They haven’t quite internalized the concept of “goose” yet, so we really just played “duck, duck, DUCK!”

I think tomorrow I want to move on to freeze tag.

lots of love,

g

The HIV children: an introduction

Today was a very exciting day because Theresa took me to meet the HIV children! There are two groups of children here at SRH: the leprosy children and the HIV children. The leprosy children are all completely healthy and live here on the compound with their families. One or both of their parents is categorized as a “class II disabled” (paralyzed limb, severe disfigurement etc), and would have difficulty living a dignified life on the “outside.” The community here provides the family with housing, work, and schooling for the children. These families are welcome to live here forever, if they so desire. The leprosy kids are really fun, and are always romping around all over the place (see “Pongal”).

The HIV children, on the other hand, are pretty self contained. All of these children contracted HIV at birth, and have lots their parents to AIDS. Many of the children were brought to Sivananda straight from their parents’ (usually the mother’s) deathbeds. Some of them were pulled of the streets.

They are secluded from the leprosy children and the majority of the community because they are very susceptible to outside infection. Additionally, they are all orphans and don’t have any family that could or was willing, to take them in. They don’t get many visitors.There are 30 orphans total: 17 girls and 13 boys, but SRH recently got a grant to increase that number to 50. They are building a brand new boys home next to the existing home.

The children’s home is all inclusive. It is a large rectangle with bedrooms arranged around a the perimeter of a courtyard on the first floor. (So even if you are inside the building, you look up and see the sky.) Additionally, the first floor contains medical examining rooms where the children see their doctor, Dr. Sugena, every day. They also see a psychologist once a week, and the SRH dentist once each month. They have three women who care for them, and a teacher. All of the caretakers are also HIV positive patients.

The second floor contains the kitchen, the eating space, a recreation area and the classroom. The children that are below 4th grade are taught by a teacher on the compound. Above 4th grade the children go to public school. One of the girls, who is 15, will be starting college in the fall (you start college after the completion of 10th grade in India). Each child has a school uniform, a set of play clothes, a set of pajamas, and a pair of shoes.

Outside the building the children have their own play area with two swings, a slide, and one of those merry-go-rounds that makes me a little nauseous.

When I got to the home, all of the children ran out of their rooms and stared at me, whispering quietly in Telugu. I stared back, taking in the gravity of their little lives. Most of them are pretty young. The youngest is 4, the oldest girl as I mentioned is 15 and the age distribution is pretty stable between those two ages. It was quiet for a minute until one brave girl stepped forward and said, “name?”

I introduced myself, “gina!”

“Thanmy” she answered.

All of the children chorused “Hello gina” and I said,

“Hey, do you guys like games?”

We played goats and tigers, which is a game the leprosy children taught me. Its basically like playing tag, except if you are a goat, and get tagged by a tiger, you have officially been eaten—and you are out. The game goes on until the last goat standing becomes the next round’s tiger. Its really convenient to play inside the building because there are clear boundaries in the courtyard, and everyone plays together really well. I can’t remember the last time I had so much fun (…probably Pongal).

These children are absolutely amazing. I am so excited for all my new little friends.

Friendship

Today was a pretty uneventful day. Before we can do any data analysis, we need to have a solid data set. And as any good biostatistician will tell you, the larger your sample size, the better your data. Sivananda is a well established institution, its been here in Hyderabad serving the poor and the destitute for 50 years.

But its true when they say “old habits die hard” and I’m not about to hand out any gold stars for the data management happening over the last several years in this HIV clinic (but wading through this mess is, after all, mostly why I’m here). All of the records are handwritten into books. There is a book for inpatient data (name, age, sex etc). There is a different book for CD4 count. There is another book for other lab results (hemoglobin, lymphocyte count etc). So if ONE patient comes to for a check-up, his or her relevant numbers get scattered among any number of books. Seriously you guys? So right now I am entering this data book by book into the database (glamorous, I know). Then, hopefully, I (and everyone) will be able to relate the data by patient registration numbers and have a nice clean set.

Yeah, sorry. That was boring.

Sunita is still gone, she is visiting her son and husband in their village in northern Andhra. When I came in to breakfast this morning, Mary was curled up in a little ball on the floor. I ran to her, “Mary, Mary? Are you okay?” In a society where women have almost no rights, there is alot to be potentially concerned about. I worry about these friends on a daily basis. Mary gestured to her head, and I realized she wasn’t feeling well. I put my hand on her head mom-style and she was warm with a fever. “Oh Mary, this place is full of doctors–why don’t you go see one?” She wouldn’t though. So I walked back to my room and brought her some tylenol. I watched her take one on the spot (DOTS, anyone?) and gave her one to take in 5 hours or so. Then I went to the office to page through my books.

Mary came in an hour later, brighter than sunshine. She very animatedly told everyone that I gave her medicine which made her feel completely better. She took my hand, pressed it to her cool forehead and beamed. Rubina (who speaks English) came to me, and asked me what I gave Mary. I produced the bottle of tylenol, and explained. Rubina, Mary, Sunita, and all the nurses had never even heard of acetaminophen. I mean, they’re nurses! what?  “You guys don’t have this?” I asked. “only asprin.” Shobba answered. I’m sure they have acetaminophen somewhere around this hospital, but I guess over-the-counter pharmaceuticals are not widely available to your average working class person?

Mary is now my most fiercely loyal friend. She hugs me, affectionately pinches my cheeks, and tries as many times as it is necessary to help me understand what’s happening around me (which sometimes really takes a lot of effort). Rubina explained to me that Mary was really touched by how kind a stranger could be. It seems that even though it was a simple act for me, it meant the world to Mary.

I laughed and told Rubina that I’ve been having the same feelings about all of them for two weeks now.

Tuesday January 13th

Today I had many misadventures getting my internet hardware. Kiran, the IT guy, is super unreliable. He said he’d be back in an hour (3 hours later I called) and then another hour. And then ten minutes (an hour after that), 10 minutes more. But I got it. I finally got it. My little TATA cellular modem. And it will be activated by Thursday at 4’oclock. And then I will have my own internet! Yessss!

We have a patient right now who is pulling at my heart. She is an HIV/TB widow, age 30, and she is really sick. Her CD4 is 30 this week, and she seems to be struggling more each day. The state of HIV in Andrah is really terrible. The major mode of transmission is hetero-sexual, through commercial sex workers. I’m hearing the same story over and over again. Man goes to prostitute, and contracts HIV (according to 2007 data, one in five men over the age of 18 in A.P. has been with a commercial sex worker at least once in the last 12 months). This man then brings HIV home and his wife contracts it (monogamous married women make up over 30% of HIV cases in Andrah) . Unaware of the virus, the wife may become pregnant, and without seeking treatment can give birth an HIV positive child (6% of A.P. HIV cases are children). The husband dies, leaving an HIV positive widow who must now bear the social stigma (when your husband dies of AIDS, everyone around you knows/assumes you have it too). She is oftentimes shunned from her family, work and community, and must find a way to feed her children. And sometimes these women turn to prostitution.

Is your heart broken yet? Because mine is feeling the strain.

So the patient that I have been seeing is facing this right now. She has no job, she has been abandoned by her family and is really struggling financially. She is very beautiful, and has a wise, proud face that has been ravaged with struggle. The really hard part is that she has three children, and the youngest one (age 6) is staying with her at our ward. He is just the cutest thing, and I am very worried about him. Rubina is our HIV counselor (and has been a very good friend to me). She educations patients about their conditions, helps them find jobs and is currently looking for some kind of program for this woman’s youngest child, or at the very least to find a job for the oldest child (age 11) who can to support the younger siblings. If this woman dies on us, the boy has to go somewhere, and we don’t have a “where” yet. The woman’s three children have not been tested for HIV, she won’t allow it. She is holding onto the hope that after she dies, someone in her family will take in the children. If it is confirmed that the children are HIV positive, it is even more unlikely that anyone will. Not only is the social strain a huge burden, but so is the medical condition.

So this little boy has become my buddy. I brought him a ring pop today that was red. Red is his favorite color. I am worried about him spending so much time in the ward alone, while his mother is sleeping, I think he’s starting to realize what is going on. During my lunch we go outside and play hopscotch, and today we flew a yellow kite. I told Rubina that if his mother dies, and we don’t have somewhere for him to go, I want him to stay with me in Guest House 1 until we do. (Which I’m sure would not go over too well with Mrs. Rao and Dr. Hrishikesh.) Rubina said she’ll keep on it.

Rubina and I have little talks about this stuff. Apparently sex education in public schools is a hot political issue. Currently, there is no formal education system in place for students in India relating to STI’s, HIV/AIDS or sex until the graduate level (M.A. equivalent). Sex, and diseases that are related to sex, are a cultural taboo. According to what I’ve been reading, in the last five years its gotten much better, and people are starting to be more aware. However, we still have patient after patient claim they got HIV from drinking bad water, or eating food prepared by an “unclean” person. I know lots of people in India are working very hard to combat AIDS, but this ignorance makes me crazy. Millions of people are dying in this country of an uncurable, but preventable disease, however, we can’t talk about it at school because it threatens the culture? I think AIDS is already threatening the culture.

So at dinner tonight the little boy and I took a survey of everyone’s favorite colors. His, as I mentioned, is red. His mother’s favorite color is maroon. Mary’s is orange. Marta’s is pink. Uncle’s is white. The older patient who wears a big dot chose purple. Larshmi’s is blue. Shobba likes pink. Marheswarie couldn’t decide between light green and yellow.

After dinner the girls busted out the henna cone and had at my left palm. Everyone took a finger. Shobba wrote my name in Telegu on my middle finger, Larshmi drew flowers on my palm. Maheswari is a henna-star and drew some beautiful designs up my ring and pinky finger. The little group of Indian women that I hang out with are so funny. They gossip and nurture and take care of me just like my friends back home (well, maybe not just like back home, but it sure is great to have friends). My henna art is all part of development into a fashionable Indian woman. Next lesson: the sari. In the meantime, henna smells like cinnamon dissolved in vinegar.

Tomorrow is Pongal, so I don’t have to work. Pongal is the Telegu celebration of New year. I don’t know much about it, except to wish people “happy Pongal” and that there will be a lot of kites. Which should be cool.

Henna

Henna

AIDS, TB and Leprosy: a crash course

Ok, so for those of you who are physiologically, epidemiologically, or clinically inclined– please cut me some slack on this. For the rest of you, this is just a crash course in the basics (very, very basic basics) of HIV and AIDS, and also a little on leprosy just to provide some context about what I am doing. Some of you guys have emailed me questions concerning the diseases, concerning my potential for contracting the diseases, and what exactly I am doing from 9-4, so maybe I can clear some stuff up? Bear with me on this.

So AIDS (acquired immune deficiency syndrome) is caused by the virus HIV (human immunodeficiency virus) which belongs to a family of viruses called “Retroviruses.” Most living things transcribe DNA into RNA and then translate RNA into proteins. Retroviruses, however, are bizarre little antigens because they transcribe their RNA into DNA, which is backwards (hence the name, “retro” virus). Interestingly enough, at SRH we refer to our patients as having “retro-virus disease” or RVDs, since there is such a terrible social stigma associated with the term “AIDS.”

Anyhow, this backwards transcription is accomplished by a specific protein called reverse transcriptase. Reverse transcriptase has a big job. It has to transcribe RNA into DNA and then that DNA is inserted into the host cell’s DNA, which is then transcribed into RNA (again) by the host cell’s machinery. This is then used as the instructions to made HIV proteins. Reverse transcriptase is prone to error though, and makes lots of mistakes. And as I’m sure you can guess, mistakes in genetics often result in mutants! Some of these mutations just happen to benefit the virus in the presence of certain types of drugs (drug resistant strains).

So what we do to prevent the rise of drug resistant strains, is to treat patients with multi-drug therapy. This way, the virus is getting killed on lots of different fronts. Its really important that the patients follow the drug regimen to prevent the emergence of drug resistant strains (which, since none of the ART centers in Andhra Pradesh can supply any kind of second line ART, a first line resistant strain would be really really bad).

HIV specifically attacks the helper T cells of the immune system, which are an important component in the arms race of fighting off antigens (bad guys). Helper T cells do exactly what their name suggests: they help. They help macrophages eat up antigens, they help B cells get activated so that they can produce antibodies, they even help activate complement which is a system of proteins that kills infected cells. Helper T cells work in many ways throughout the entire immune system, so without them, a patient is immuno-compromised and their body struggles to fight off infection. Another name (a more technical name) for Helper T cells is “CD4 cells.”  Our patients have to get CD4 counts, which is an important test that helps the doctors (and hopeful medical students from America who follow the doctors around) to understand how the patient’s body is holding up against the virus. When a patient infected with HIV has a CD4 count less than 200 cells (per microliter of blood) they officially have AIDS. This point is an important marker for medication. The children, however, start medication when their CD4 drops below 500.

As the CD4 count drops, the immune system becomes weaker and weaker. As a result, patients get lots of opportunistic infections. Opportunistic infections are caused by other bacteria or antigens (not HIV) who are taking advantage of the weakened patient. The most common opportunistic infection in patients with HIV that we see at Sivananda (and the most common globally) is tuberculosis (this is often referred to as HIV/TB co-infection). Generally speaking, TB is not a highly infectious disease, and in a healthy individual it is pretty difficult to contract.  Additionally, patients receiving treatment are not infectious (therefore, it is possible that I could contract TB, but it is really, really unlikely that I would, so please don’t worry about that either). The bacterium that causes TB, Mycobacterium tuberculosis, is very very slow growing, and oftentimes (95% of the time in imuuno-competent individuals) the immune system kills it before it can get fully established.

Commonly, TB is found in the lungs. This if for a few reasons, one: the immune system generally tries to stay out of the lungs, because I mean, the less stuff in there the better. Two: TB is spread through droplets, so it is inhaled, and then sets up infection in the lungs, because that’s where it lands. However, since HIV patients have such weak immune systems, the TB has some pretty free range. It can a little haywire and sets up all over the place! This is called extra-pulmonary TB. I’ve seen X-rays and ultrasounds of patients with TB in their kidneys, in their brains, and even in their pancreas. From a social standpoint, its really sad and terrible, but from a clinical standpoint it is very interesting. Sure enough, India is the TB capital of the world. Andhra Pradesh has the highest percent of TB in the country, and Hyderabad is the capital of A.P. So I mean really, if you want to see some serious TB—this is the place to be. TB is curable, and is treated with multi-drug therapy to prevent drug resistant strains (same as with HIV). Drug resistant strains of TB do exist, and it has occasionally been the cause of some pretty scary international panic.

Dr. Yadavalli (my supervisor in Ohio) and his team of students (myself included) have been working in the HIV clinic creating a computer database of the patient records and collect the data from usable patient cases. I have zero contact with serum or blood, so do not, under any circumstances, worry yourself about me contracting HIV. Our goal is to write and publish a paper about the types of opportunistic infections that we are seeing, the CD4 counts (along with some other lab data such as lymphocyte count and hemoglobin) and the patient demographics. This data is important on a global perspective, because it helps keep the medical community abreast to what it is happening in the developing world, and the relationship between the struggles and resources available. Millions of doctors and scientists are working very hard to bring down the cost of HIV tests and treatment, and to increase the efficiency. Additionally, a publication is important source of PR for Sivananda.

Feeling overwhelmed? You’re doing great! Ok, so let’s switch gears to leprosy.

Leprosy is caused by bacteria, Mycobacterium leprae, (same family as TB actually), and like Mycobacterium tuberculosis, it grows very slowly. In fact, it is the slowest growing of all known bacteria. Because of this leprosy is 1. not very contagious and 2. very curable.

Leprosy is a disease that primarily affects the nerves. The skin lesions, infections, muscle atrophy etc are all complications which arise from the damaged nerves. The bacterium prefers cooler temperatures, so it usually localizes away from core body temperatures in the limbs and the face. Therefore we see most of the damage in the hands and the feet. The bacteria settle in the Schwann cells and causes the nerve to demyelinate. The nerve becomes very thick, and the doctors can physically feel it. The thickening nerve results in a lack of feeling to the given area.

In the case of the ulnar nerve (take a second to bend your elbow. Now feel between the two little bumps at the end of your funny bone. If you don’t feel a thick nerve bulging a little that is sore when you push on it, there’s a good chance you don’t have leprosy) the thickening results in “clawing” of the hands. The fingers bend completely at the top two knuckles, so the palm is open, but the fingers are rolled down. The hand freezes in this position. At SRH, the doctors perform reconstructive surgery to straighten the fingers out and angle them opposite of the thumb. They are still frozen in this position, but at least the patient can pick things up and use their hands a little bit, as opposed to the claw hand, with is pretty useless.

The WHO (and Sivananda) classify leprosy into two types: PB (pauci-bacillary) and MB (multi-bacillary). MB is more severe, and is characterized by more bacteria in the body, and more extensive anesthesia. Most of our patients are MB. Patients are treated with multi-drug therapy: two drugs for 6 months for patients with PB, and three drugs for 12 months for patients with MB. The WHO provides free medicine to any patient in the world with leprosy. Once on the treatment, the bacteria in the patient’s body gets killed off very effectively, and no new nerve damage occurs. The problem is, any previous damage is permanent. Additionally, new complications are always arising from old damage. We have many patients each day who get some really heinous ulcers. The patients injure themselves, but don’t know it (no feeling) and then the injury becomes infected. The ulcers, lesions, gangrene etc. that result from these injuries are where leprosy gets the stigma of uncleanliness.

Globally, leprosy is really on the decline. India and Brazil make up over 80% of all leprosy cases in the world, and with available treatment, people are cured left and right. It’s a great success story, but its really important to recognize that patients who are “cured” of the disease still live a long life of complications, disfigurement, and are socially stigmatized. SRH does a really good job of treating the whole patient, not just Mycobacterium leprae. Patients who are too disfigured to function outside live here. They have dignified work, food, clothing and a welcoming community. There are weaving factories on campus where linens and bandages are made of the hospital and the community. Rehabilitated patients can receive training to do LPN work, secretarial work, or even learn a trade. Additionally, my night watchman is a cured leprosy patient. It really is remarkable to live and work in such an interesting community.

So there’s a little bit on HIV/AIDS and leprosy (and some TB thrown in to boot!) If you’re interested in further reading try:

http://www.who.int/mediacentre/factsheets/fs101/en/

www.apsacs.org

and of course:

www.sivanandarehab.org