Week 2

(again, some political content, please do not forward or share without my permission)

I have now officially been here 2 weeks.

I didn't expect to become so overwhelmed by the situation here. I didn't expect for it to affect me as deeply as it has...I expected that I would see a lot of hard things, and I would do what I could. But my heart is heavy, and I feel helpless in a gigantic situation.

This past week was hard. The first week, I saw lots of hard situations, but an attitude of hope and encouragement along with the hard situations.

The second week I was presented with a much bleaker picture.

I attended a staff meeting last week at the hospital I was working at. The big topic of the meeting was that the pharmacy was about to run out of anti-retrovirals (lifesaving drugs for people with HIV/AIDS). THey had received a letter from the local medical government official that the new shipment of drugs was going to be delayed indefinitely. Someone from the government had forgotten to pay the bill, and thus, the drug company refused to send the drugs.



Two steps forward and one step back. I want to be hopeful for the situation of HIV/AIDS in this country. This is a disease that is killing people, creating orphans, spreading like wildfire, and infecting 21+% of the population. I want to believe that the people in politics are starting to pay attention. I want to be hopeful about the fact that Jacob Zuma is acknowledging the disease, increasing funding towards treatment, and encouraging the population to be tested. I want to be encouraged by this and feel this is moving things forward.

So here is the process:
someone finally decides to get up the courage to be tested -> they test positive -> they get a CD4 count to determine how advanced their immune depletion is ->if their immune depletion qualifies them, they start on antiretrovirals (ARV).

So when you have a block in the drug supply, here is the problem:
1. For people who are already on ARVs, if they stop while they are waiting for the drug supply to come back, their virus has a chance to replicate and mutate, and potentially become resistnat to the drugs they are taking (and in SA, there are only 2 cocktails available - in the US there are more...But if you become resistant to one, you only have one other option).

2. Do you continue to test people when the drug supply is down? It is good for people to know, so that people can potentially prevent spread. But say you find out you are positive. And a follow-up CD4 count is very low, showing you have likely had HIV/AIDS for a long time, and your immune system is very compromised...Then you are told the drug supplies are out, and you will have to wait until they are replenished before you can start treatment. In the meanwhile, you may develop and overwhelming infection and die. So people are encouraged to test, but if they do, you are telling them you can do nothing about the results?

I had heard before I started, and observed since I have been here, that there is a lot of resistance to change. Resistance to change hospital policies on infection control, resistance for healthcare providers to care for people with HIV, resistance for the people of the country to accept the disease, resistant for people to get tested and acknowledge it is a possibility they are infected...And I have noted this resistance to change, which is both frustrating, and something I don't want to acknowledge is there. All the same, I can understand why the resistance to change occurs now...Why should you care about testing if there is nothing you can do about the results? Why should drs take care of HIV patients when they run into situations where their hands are tied and they have to stop treating? I feel almost as if it is a learned helplessness.

I must say, I admire very much the doctors and nurses at Rob Ferriera Hospital. They have a very difficult job to do, they persevere, and they handled this situation with a lot of grace. Everyone was frustrated, but knew there was no use in blaming or focusing on why the situation is the way it is. They focused on how they were going to deal with it. This is an attitude I have found very rare, even in the US where we run into situations that aren't quite as impossible.

And as usual, some patients stood out to be this week.

One woman was almost exactly my age...Born within a few weeks of me. It is weird to think of how different our births would have been, how different our paths would have been over our 29 years. And both of us born the year HIV was described/identified...Her world, going to be completely changed by this epidemic, mine, only if I choose for it to be.

Anyhow, she had been on therapy for 3 or 4 years. She had never had a good response, her viral load had never been supressed (the mark of effective treatment is that your viral load - the amount of HIV in your body, goes down). And because of this, her immune system was quite impaired. When the doctors were deciding whether to put her on a new cocktail (which has huge implications - if she fails the first, and then fails the second, in this country she has no other options), they discovered that she was only taking her treatment 1 or 2 times a week. Which will make the treatment ineffective, and also potentially create virus that is resistant to the treatment. So the decision was made to take her off treatment until she could "sort herself out."

I saw her later in the waiting room. Just sitting there, expressionless. And I can't even begin to wonder what her experience is, and why she was where she was. Was she depressed? The patients here are so stoic that it is not often a possibility that is considered. Was she hopeless? Did she feel like she was going to die anyway and there was no reason to take the treatment? Did she not have anyone in her life encouraging her to live? I am sad to say that I didnt have the communciation skills in her langugae to be able to ask these questions. Nor do I know if there is a cultural concept for these things. But all I could see was someone born within weeks of myself, on the other side of the world, whose course and environment were so different from mine...And I felt guilty, that in my world, I had parents unaffected by HIV, that they are still alive and available to encourage me...That I haven't seen friends and family die of HIV, while sitting by helplessly...That I have had the opportunity to go to college and med school and have a steady career which is fulfilling...That I haven't had to battle this disease myself - with it's stigma, with it's chronic treatment that may cause side effects, with it's blame, it's ability to change (or fail to start) relationships...

Ack.

Quote from staff meeting

only in Africa could this comment at a staff meeting not be inappropriate & cause someone to meet with HR (stop reading if you are easily offended): "I am the mother of this unit. And I have large breasts, engorged with the milk to feed and nurture you (while grabbing her breasts)"

Tired!

I am so so tired!
Have you ever been in a country where you knew just a little bit of the language? And you spent all day trying to communicate and trying to understand? And it took up all of your mental energy? And at the end of the day, regardless of how you spent your day, you are exhausted? That is how I feel now. Except that it is English I am speaking...And I have a translator for Swazi-speaking patients. But that is how big I feel the cultural divide is currently.

But alas, I have decided to dedicate a post to the positive things here:

1. It is raining tonight, despite the fact that it "never" rains here during the winter.

2. There is a wonderful woman who runs this hotel, named Coba. She mothers everyone from staff to visitors. She if effusive, energetic, friendly, and is always trilling about with her Afrikaans accent. When I get home from work, tired, and must finish up my reporting for the day (which I have to do in the hotel lobby because it is the only place my 3G card works here), she fusses over me and brings me coffee and tells me to take a break so that my eyes don't ignite.

3. The bed and breakfast we are staying at right now is beautiful and comfortable, and is suprisingly cheap because of the area we are in. The cooks, Sannie and Della, cook wonderful, DELICIOUS food with fresh ingredients. They made me a lunch today to take to work (I can't remember the last time someone packed me a lunch), and it was wonderful.

4. I have received great encouragement from friends and family via email, from those who have been in this program and those who haven't.

5. Upon arriving at work today, in a public hospital, I was greeted with the nurses singing the morning prayers with the patients before clinic got started. It was just about the most beautiful thing I have heard, and although it was in Swazi, I understood it. Maybe the emotion in the tone of it's deliverance, or the soul-rawness of it. At any rate, it was a moment of connection before starting my day.

6. I love the way the women carry their babies here. The babies are placed on their backs, legs wrapped around them (sort of like if you were giving a kid a piggy back ride), and they tie a blanket or shawl around the both of them to keep the baby in place. Not suprisingly, South Africans have the best adherence rate for slings for congenital hip dysplasia (because the way they carry them is sort of like that sling). Anyhow, today a mother came in for her treatment, with her one year old tied to her back. While we were talking to her, the child was playing peek-a-boo with me around his mother's shoulders and smiling an adorable smile. I asked the mom about him, and because of prenatal treatment, he did not convert, and is HIV-. An encouraging way to end the day!

Urban Hospital, Cultural Clash

Today I started working at Rob Ferriera hospital, an urban public hospital in Nelspruit. It is quite a contrast to last week. Moreso than I have felt yet while I have been here, I sense my “otherness.”

In the ACTS clinic last week, the patient population was totally foreign to me. A people whose lifestyle I understood poorly, and a language I didn’t speak. And although I think the doctors there have done an excellent job learning the language and the cultural practices so that they can be effective physicians, they are still very Westernized, and it was very comfortable for me to work with them. In addition, they wanted us to come, asked for us to come, and were eager for us to be there and teach.

Yesterday we arrived at the hospital, and the minister of health of this province had not sent a letter or given advanced notice that we would be there or that we had permission to be there. So yesterday we could not work, and subsequently, our position and role has been ill-defined. Today the minister of health appeared in person to give her permissions. Although all the staff have been quite kind, I can imagine it is not a great way to start your week to find people who you perceive as “auditors” to be spending the week with you.

This week, I am working with all South African physicians, which is wonderful, but I definitely feel like more of an outsider, and am feeling the cultural rub. When they shake your hand here, when you greet, it is a bit of an involved handshake, releasing, repositioning, and then releasing and going back to normal handshake position. It felt like a secret handshake to me the first day, I know I still can’t do it quite right, and I am practicing in my room out of their vision. The patients all speak another language as well, but mostly Swazi, not the SwiZulu that was spoken last week. I have picked up that “Dokotela” means doctor.

Not knowing the culture, I speak and act with more cautiousness this week, wanting to not overstep boundaries or do or say something culturally unacceptable.

In addition, today I was paired with an older male, a general practicioner (many of the physicians here, especially in the public sector do not specialize), who does most of the peds work. Upon being introduced to me, I could tell he was uncomfortable hearing that he was going to be taking advice from someone who appeared to be about 20, was a woman, and was white. While we were waiting for the first patient, he was talking about why he hadn’t specialized, why he had never been to America, etc. Almost felt like he was defending himself. I felt awful. I didn’t want him to feel emasculated or threatened by me or made to feel inferior by me. It was a challenge all morning, when I saw things being done incorrectly, to make suggestions without feeling like I was bossing him or criticizing. At one point, he left the room to see a screaming patient…I suspect he took longer than he needed to, because he told the nurse to keep sending me patients and I could see them and dismiss them without him being in the room…Maybe I am overanalyzing that. It is hard, when my main job is to teach out of what is not working and what is missing, to not FEEL like an auditor.

I have to keep encouraging myself that I can just do the best I can. I can just be as gentle as I can, as understanding as I can, to have as much wisdom as I can in the settings I am in. I hope and pray, that my heart is open, my eyes are open, and I am seeing and hearing without putting too much of my own cultural superiority on things. And that in the meanwhile, in the midst of the chaos, in the midst of trying to speak and understand a totally different cultural language, I am seeing and understanding the beauty of what is around me.

I continue to be struck by the numbers of orphans here. I think half of the pediatric patients I saw this morning were AIDS orphans. In the Mpumalanga province, approx 28% of the population is infected with HIV. That sounds like an enormous number, one that you can’t quite get your head around, but when you start to see all the orphans, a generation of children abandoned, your head starts to get around it.

I was also made aware today of how much denial and stigma exists around the disease, even a disease that is now getting political attention, that is getting national festivals around curing and preventing, that is infecting almost a THIRD of the population. Stigma and denial still exist. We saw a woman today who was 36 weeks pregnant. She is an educated woman (which is not true of the entire population). During her prenatal care for her last child in 2006, she was diagnosed with HIV. She has not since seen a dr about HIV. She did not come to the dr during this pregnancy until today, almost at her due date, knowing that medicines were necessary throughout her first pregnancy to help prevent mother to child transmission. In addition, her CD4 count is now 22, which is SEVERE immune suppression. It could have been prevented from getting that low had she presented to care at some point between 2006 and today. The only way I can explain this is denial. Denial that this disease was in her, that she was part of the stigma…Because otherwise, there is no logical explanation for why she would not come.

The beginning of Week 2

(please especially don't forward this post onto anyone without my permission, political content ahead)

Back in Nelspruit today. This week will be working in Rob Ferriera Hospital, a fairly urban public hospital here, as compared to the rural clinic we were in last week.

Last night before we left the unincorporated township where the rural clinic is, we had dinner at the home of Dr Ian Proudfoot and his wife Joan. With the luxury of sitting over a lovely dinner in a warm room (I don;t believe there was another warm spot in all of the township. As soon as we got "home" every night, I had to go to bed because I was too cold to be anywhere else), I was able to hear more of Ian's story about how he ended up in this rural area, and it was so extraordinary and touching, I had to share it.

So as I mentioned before, Ian had spent his whole life (up until 18 months ago) in Cape Town, and had spent the first 20 years of his practice there in the private sector. In South Africa there is a public system and a private system. The private system is for well-off people with insurance and money. It is a high quality system, indistinguishable from what you would find in a good US hospital. The public system is government run and known to be overtaxed, underresourced, etc. 80% of physicians work in the private sector, 20% of people in the country can afford private insurance. So the other 20% of physicians are taking care of 80% of the patients, with lesser salaries. Can you do the math and see why the public system is over-taxed?

Anyhow, Ian was working in the private sector, was feeling like he wanted to move to the public sector the more he heard and understood the need. He was exploring different options, and concurrently he and his wife traveled to the eastern part of the country to visit their favorite spot, Kruger national Park, for a weekend holiday. In looking for accomodations during their trip, they found that this clinic, ACTS, had very cheap accomodations close to the park, so they decided to stay there. While checking in there, they found out Ian was a dr and started trying to sell him on working in the clinic, as they were looking for another dr. He was skeptical at first, but he and his wife started discussing it as he had been looking for options in the public sector.

So they are driving through the park, and see 3 people sitting on the edge of the road. For those of you who haven't been to Kruger, you DON'T get out of the car. There are wild animals everywhere, and they walk in and out of the roads, and it is seriously dangerous to not follow the rules. Getting out is dangerous, sitting on the side of the road more so. They assumed the people were refugees from one of the countries northward. Apparently many refugees cross through the park, as it is not gated very well on it's northern border, but it is VERY VERY dangerous and many are killed in the process.

They drive a kilometer further down the road, and see a pride of Lions, close to the road, staring back in the direction they had come, where the refugees were. They had a very intent stare. They continued driving, and Joan became more and more uneasy, and said, "we have to go back and get those refugees, I have a bad feeling." So they went back to the refugees. They tried to talk with them, the refugees did not understand their language. So they gestured into the car. Meanwhile, they can see the lions in the distance, stalking closer and closer. The refugees refused to get in the car, likely nervous because of their "illegal" status. Finally, Joan and Ian pulled out their game book and showed a picture of a lion, pointed to the road where the lions were in the distance, and the refugees got in the car. They then weren't sure what to do with the refugees, but found a ranger to take them out of the park.

Later, while they were getting ready for bed, both of them felt simultaneously like it was meant to be for them to move to the Mpumalanga province and for Ian to work at the ACTS clinic. And as they put this out in the open, and realized they were on the same wavelength, Joan remembered a dream that a friend had shared with them. She had told them that she had had a dream about Ian and Joan recently, and that the imagery of the dream was abstract, but the way she had understood the dream was "once you save someone's life, the path of your life will change." And this further solidified their decision to stay.

And 18 months later, they are at total peace with the decision. Even with daily drives down an unpaved, muddy road, car getting stuck often, black mamba snakes (the most deadly snake in the world) on their front porch, etc.

I just thought that story was so touching and beautiful, I had to share it.

More later on my thoughts about being back in Rob Ferriera and an urban setting, tired now and must go to bed.

Week 1 in Africa

Just finished my first week in South Africa, and my first week of clinical mentoring.

Initially had some computer trouble, and wrote like 10 pages in my journal about how I felt the first couple of days…I will spare you all the details. But basically, I was alternatingly excited and nervous about being here. As I watched the “moving map” on the plane, I got more and more nervous as I saw us approaching Johannesburg. Who was I to be doing this? I am a resident, practically the lowest on the totem pole. And I am here to teach?! Humbling…

So I arrive in Jo-burg on Saturday night. A nice man named Hetmen picked me up from the airport and took me to Pretoria. We chatted on our way to Pretoria. I was struck as we talked at how clearly non-American he was (bear with me, I don’t expect people in other countries to be “American.” In my head I was just comparing things). It wasn’t just his accent, but also the way he carried himself. There was a bit more joy in him than I see in America, generally…And I think also a bit less anxiety. He dropped me at the hotel I was staying in for the night, and said “and now you are home.” I found that so comforting. At first I thought it was just his English translation (but nonetheless found it endearing), but I have subsequently realized that that is a common expression here. Somehow makes things feel more hospitable. And the actions to back up this piece of warm fuzzy dialog. When I arrived at the hotel, the clerk made me a pot of tea before I could even check in, and my experience with service and hospitality has been the same since.

On Monday, Vivian (a woman who is here working for the program for a year), Rolando (a UCSD pediatrician/infectious disease specialist whose last week was my first week) and I drove to Nelspruit, about 4 hours due east from Pretoria, in the Mpumalanga province. Vivian soon returned to Pretoria, so she could fly to England for her vaca.

Rolando and I spent the week working in a clinic called the ACTS clinic. It is a faith-based clinic, whose vision is: “to provide quality care & support to all those infected & affected by HIV/AIDS & to model this in the Masoyi Tribal Area.” Our main contact at this clinic was a man named Ian Proudfoot (not native American, in case you were wondering, because I did). He is a lovely, welcoming, gentle, and inspiring physician. His training was in “general practice” and he had spent all his life and the first 20 years of his practice in Cape Town, in the private sector (essentially rich people). About 2 years ago, did some soul searching, decided he needed to address the AIDS crisis in his country, moved across the country and joined this public clinic. He had never done AIDS/HIV work before, and had rarely seen children. He also didn’t speak Swa-Zulu which is the predominant language in this region. He has proved to be a quick learner of all of the above, and his enthusiasm is inspiring.

The clinic was great. They took what used to be a tobacco farm, solicited funds (partly from Swedish churches, some from PEPFAR – the US government funding of African HIV work), and basically rose from the ashes. An old shipping container was recycled into an on-site lab. Timber buildings with corregated tin roofs house the clinics, a 12 bed inpatient facility, and a counseling center. They have an on-site pharmacy to dispense patients meds, as most patients are too poor to buy meds on the outside. And I can see, they are SAVING LIVES. Just a year or 2 ago, all of their patients would be knocking on death’s door. Despite that, I am struck how many resources we waste in the US, and how we take for granted the billions of tests we order with the click of a button. The providers here didn’t have access to a CT scanner with the exception of a hospital about an hour away. And even then, as I was told “one CT scan would blow our testing budget for the entire year.” So something we order without even thinking in the US is a COMPLETE luxury. And they make do with very basic labs and chest Xrays, and a limited supply of meds.

The children here are so stoic. I was looking at a tiny 8 year old’s anti-retrovirals. They were HUGE. Like, I would have trouble swallowing them. And that was just one pill of three, and she has to take 2 tabs twice a day. I asked her mother how she gave the pills, assuming that she crushed them in food or something. The mom looked at me, surprised, and said “well, she swallows them with water.” The children don’t complain, their parents are not thrown into anxiety about their symptoms. One boy I saw had a rash all over his chest and back. We decided it was either fungal or a complication of his HIV. In the US, he would have along the way been labeled as an “allergy to amoxicillin” (which all the kids here get at some point for their frequent pneumonias due to compromised immune systems). Here, nobody seems to be allergic to amoxicillin. In the US, it is all over the place – “rash” “GI upset,” etc. There, amoxicillin is almost the only antibiotic you can receive for pneumonia, not taking it can result in death at worst, lung damage at best, in many cases, lungs that have already had HIV complications and/or tuberculosis.

I don’t mean to bag on the US. I hope to be a parent some day, and know (esp with my medical knowledge), that I will freak out about every symptom my child has and probably make their doctors nuts. But my point is just that abundant resources allow us to be more picky, more demanding, and more whiny (myself included). I was struck this week how many of the children we saw were AIDS orphans. They were being raised by grandparents, older siblings, or themselves. You hear the statistics, and then you hear a 9 year old recite his own meds because there is nobody to be responsible for the meds except him. I was struck by the number of children who were “failure to thrive” – in other words malnourished. Their HIV is treated, they are screened for TB, treated for worms, and asked about their symtoms. If no obvious cause is then found, the children are watched, sometimes given a fortification powder. In the US, we admit these children to hospitals. I suspect, based on the town I subsequently drove through, more of these children don’t have enough to eat than their caretakers are willing to admit. In addition to there being extreme poverty, a child’s metabolism increases by 30% when they have HIV.

One story stands out to me this week. We saw a 22 month old girl who has HIV. She is the size of a 6 month old (6kg), and has the development of about the same (can only sit up, makes no cooing or babbling noises, poor social contact). Her mother is mentally retarded, and the social situation is complicated. It is unclear whether the child is receiving her antiretrovirals, and how well she is being fed. In addition, on exam, we are suspecting she has some other genetic problems. We talked later with the social worker about her. The social worker expressed her extreme concern about the child’s development. She stated that some members of the clinic wanted to take the child off ARVs and “let her die.” She felt they should do a big effort at advocacy for the child before resorting to this. I was struck by this. The whole situation is heartbreaking, however you look at it. And I guess you can look at “letting her die” in 2 ways. You can see it as compassionate, in a child who will likely not survive much longer, or you can see it as a tragedy in a setting where resources are limited. I am not sure where I stand. In the US, I would like to be able to work her up a bit more and try her in a different social situation (we are doing a bit more work-up here, but it is limited – there is no “organic acid” panel we can get). But after that, I think “letting her die” may be the most compassionate thing. In the US, she would get a G-tube, tube feeds, seizure meds, and would be in and out of the hospital all the time…Is this better? Isn’t it a bit of torture to continue to force medical procedures on a child who will never understand their benefit?

I was also struck by the story of a woman in their “inpatient” unit who had died of coughing up blood, while she had TB, and a superimposed pneumonia. All I could think of was imagining in the US her being whisked off to IR, to get her lung embolized…Here, they handed her a bucket as she coughed, and held her as she died. Would the ultimate outcome have been the same in the US? After an invasive procedure? Is it better to die in the arms of someone or on a cold operating table?

But I have been shocked at the ability of people in the US to rally after what should have been a life ending complication of disease. And they have more time, if even a month or so, to hold and be held in the arms of people they love. So I don’t think everything we do is futile, some of it is definitely life saving, and life-quality saving.

These are just questions I am wrestling with