Thankful: Joy (a reprise)

Laughter is eternity
If joy is real

- U2

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I was pretty worried that Micah was not going to make it. When I first saw him in the AMPATH HIV clinic, he was one of those children who made me angry about the injustice of one little body bearing so many burdens. Cerebral palsy and HIV and a reactivation of chicken pox infection that was crippling one of his eyes.  To make matters worse (if you can imagine worse), his father had died a few months before and his mother was having a terrible time scraping together enough food for her family of three to eat. Micah’s already-burdened body was frail and weak because he was lucky to get one meal a day.

Micah’s little body exposed the limits of what we can do. We cannot take away his HIV or his cerebral palsy. We cannot restore his sight in that eye. And, of course, we cannot bring back his father. I hate all of that.

But we fight within our limits: Medicines to make his virus sleep.  Therapy to help him get closer and closer to walking. Food rations to let him and his family grow strong enough that his mother could return to work and he could sleep without an aching belly.

Even when we bang against our limits with angry fists, there is beauty if you look for it.

When I dropped by Micah’s house this weekend for a visit, my eyes filled with tears as he hugged me with a big smile and managed to say, “Daktari Rachel!” A neighbor in their shanty compound was playing loud lingala music, and Micah laughed and laughed and laughed as I danced him around the yard.

Joy.

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Thankful: Water

My biggest culture shock happens in the bathroom.

As I head back from months in Kenya, I inevitably have moments of surprise and wonder as I re-enter a different world as epitomized within the women’s restroom. The toilets have seats! There is toilet paper in every stall! And the toilet paper is so ridiculously soft and plush!

And it gets even better. There is the amazing luxury of a well-functioning tap from which water runs. Not only can I easily wash my hands, but this water even gets hot and cold! And – wait a minute – I could drink this! The shock of amazingly clean, perfectly drinkable water flowing from every tap still bowls me over for a moment.

I could drink this water straight from the tap of every sink in the Amsterdam bathroom. I don’t need to boil it and filter it and put it in my own bottle. I don’t even need to buy it. Amazing!

(I am well aware of the number of exclamation points in this entry, but toilet seats, toilet paper, and CLEAN WATER EVERYWHERE are absolutely punctuation-worthy!)

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In many parts of the world, a tap with running water is a luxury. And clean water everywhere — water that won’t make you sick, water that won’t kill your babies – this is the stuff of dreams.

Most women in Africa walk for their water. The 40 billion hours a year that Africans spend walking to get water is mostly the work of women and girl children. Walking to the river, walking to the stream, walking to the borehole where the nearest water flows. Sometimes, walking for miles.

And still, this precious water too often contains diseases that will make them sick, diseases that will kill their babies. 800,000 children dying every year from diarrhea. Only 60% of my neighbors in Kenya have access to “improved water sources” – and that’s still water that should be boiled and filtered.

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AMPATH operates a safe water project that works to give more of my neighbors in Kenya access to clean water by opening stores that sell ceramic water filters, spear-heading well drilling and refurbishment projects, and training communities about safe water.

At safe water (Maji Safi) shops, families can get high-quality ceramic water filters that can put an end to their constant boiling. The filters are a big investment for a family, but the safe water department believes this helps them value the filters and treat them with care.

On a bigger scale, they work on projects like wells for communities and functional taps for our rural health centers and hospitals.

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I am thankful that I can go into virtually any bathroom in this country – not to mention all of the kitchens – and get a glass of clean water. Drinking clean, beautiful water in thanks.

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Thankful: Marian

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Marian sits quietly in the chair in our clinic room, her arms wrapped around her sleeping one-year-old daughter. One-year-old Ellen breathes heavily, but only with the deep in-and-out of sleep. Her lungs sound clear and healthy when I listen with my stethoscope.

Six months ago, baby Ellen had a pneumonia that landed her in the hospital. She struggled to breathe, and the infection in her lungs almost ended her short life. Under my stethoscope, her breathing was coarse and crackly, her lungs filled with fluid and infection.

Marian had given birth to Ellen at home, and she had never been to a hospital before in her life. But worry over her coughing, gasping baby pushed Marian to bring her to the hospital facility where she thought her sick baby could get the treatment she needed. Bringing Ellen to the hospital saved the baby’s life; she needed medicines that could only be given there. And it turned out she needed the hospital for other reasons as well.

While Ellen was in the hospital, the doctors tested her for HIV. Positive. When a baby tests positive for the HIV virus, it almost always means that the baby’s mother is infected too.

On that day six months ago, Marian held her sick baby in her arms as she sat in a single bed on the hospital wards and she heard that both she and baby Ellen were HIV positive. Marian carried in her blood the virus that would end both of their lives. At least, that’s what she thought.

“I thought that HIV means death,” Marian said. “I knew we both would die.”

Thankfully, Marian was wrong. Her efforts to get Ellen to the hospital meant that the baby could have the antibiotics and oxygen she needed to treat her pneumonia. And although many HIV-infected babies do die when they are not tested and when they do not get treatment, we knew now that Ellen needed this treatment. We could offer baby Ellen treatment – and Marian too. Mother and her baby were quickly enrolled in one of our AMPATH clinics, and both were started on medicines to treat their HIV.

Ellen recovered well from her pneumonia. She has been growing quickly and the medicines have helped her to progress through all of the baby milestones we would hope for – sitting, crawling, standing, starting to walk. No more rashes, no more pneumonias, no more skinny and not-growing baby.

“Look at her,” says Marian proudly. “You would never know.”

Marian is feeling better too. Her childbirth had left her with anemia, and she had lost far too much weight. With the medicines, she says her strength and weight have returned.

“I am thankful,” Marian says. “I am thankful we have known the sickness is there and come to treatment. Otherwise, we would have been lost.”

I am thankful too.

During this week where we practice gratitude and celebrate thankfulness, I am going to remember, one-by-one, some stories of thankfulness. Stories of thankfulness in the face of the upcoming World AIDS Day, in the face of the epidemic of this virus.

Marian was thankful that the virus in her blood and in her daughter’s was discovered. Thankful that she could be linked into HIV care. Thankful that they could be started on the medicines that transform HIV from something that means certain death into an illness with which one can still live. Thankful that she can hold in her arms a healthy, growing, sleeping baby.

I am thankful too.

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Go With Hope

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Everything about Mwangi’s presence in my clinic room speaks of failure.

As I was racing in between giving a presentation about our research findings and a full schedule of interviewing candidates for new positions on my team, my clinical officer Jane called me and said the words I cannot resist, “Please, Daktari Rachel. Please will you come to see this patient.”

Mwangi was already in the room when I got there. He is 16-years-old and is dressed like a teenager in jeans, a t-shirt, and black jacket. His lanky arms and legs speak of a body that could grow tall, but his body is failing him. He sits next to my desk, slumped over, with his head leaning heavily on hand propped up on the desk. His face has the gaunt, hollowed out cheeks and temples of a body that has lost every possible bit of padding. Even worse, his eyes are dull, sad and distant.

The clinical officer tells me that Mwangi is an orphan. He has been looking after his own medicines for the five years since he was diagnosed with HIV. He has tried to take the medicines as prescribed, but he admits to the clinic staff that he sometimes misses them.

Looking over his laboratory results from the last year, I can tell that the medicines are not working to keep his HIV virus under control. The amount of virus in his blood is high, and the cells of his immune system are far, far too high.  He has been coughing for weeks, and Mwangi lost 30 pounds that he could not spare in the last 2 months.

I am concerned that TB is now attacking his body, allowed in by the lack of defenses. His weakness makes me concerned that his body is going to give out on him completely unless we do something very different.

I can give Mwangi a new set of medicines to try to disable the virus in his blood – and hopefully restore his immune system. I can wallop the TB with the best medicines I can find. I can get him extra calories and even put him in the hospital if he needs that kind of care.

But I am worried that I cannot give him hope.

I look into his sad eyes, and I tell him, “You can meet this challenge.” I tell him that I am worried about him and that I want to help him become strong again. I tell him that the medicines will work, that they will heal his body and give him strength and allow him to do anything that he wants to do – school, get a job, get married, have children. I tell him that this is all possible if he meet the challenge of taking these medicines. I want to believe what I am telling him.

It’s a lot of talking, but even more drawing. I like to draw pictures to show my patients how HIV tries to kill the soldiers of your body, leaving it weak and susceptible to germs, but also how HIV medicines can work to keep the virus sleeping and allow the body to recover.

I draw and I talk and try to check whether Mwangi understands me and whether this time together brings back any of the light in his eyes. I am hopeful that I see the beginning of more sparkle.

“I can meet this challenge, Daktari,” he says confidently. “I will go and become strong.”

“Go with hope,” I said.

He wants to take the drawing with him when he leaves the clinic, along with all of his new medicines and a special bottle that will help us monitor electronically when he is taking the medicines.

I hope that he carries a spark of hope with him too.

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Wordless Wednesday: My Buddies

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