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Saturday, January 19, 2013

Good news and bad news.

Baby Nathan arrives at El Roi.
First the good news. Yesterday Baby #24 arrived quite unexpectedly while I was in town with Chloe running errands and preparing for our trip last week. The Grandmother of the baby brought him for help because the mother is not doing well physically and couldn't travel. We will go and check on her today. Thankfully I had an emergency diaper bag in the back of my car, packed with love by Lori Marschall for "such a time as this".  Baby Nathan was born on January 5, 2013 and he is now home at El Roi.  That's the good news.

Now for the bad news.

This past month I have learned four very bad words:  Multi-drug Resistant Tuberculosis (MDR TB).  Maybe it’s only three words, but they are words that I had never heard in my whole life until I met the young woman whom I will call “Nomsa” – the mother of our twin girls Leah and Rachel.

If you read my blog dated December 15th you will remember how I met this young woman.  It was a desperate and heartbreaking meeting as she handed her precious 3-week old babies to me from the back of an ambulance and then tried to be brave through her TB mask while tears of sorrow and regret poured out of her eyes.  I didn’t think I would see her again because she was going to the National TB hospital to die.  She borrowed a cell phone at the hospital and called me that same night to see how her babies were doing. I immediately liked her and thought that I should plan to visit her in the New Year. My visits have now become a weekly event and usually the high point and the low point of my week.

Nomsa has Multi-drug Resistant Tuberculosis and is “co-infected” with HIV.   She is very very sick and has a long and difficult road ahead if she is to live.

When I first went to see Nomsa I had to find my way to the TB hospital. I had never been to (or heard of) this place, but it was easy to find.  It is a huge, multi-building facility that was built in 2009 to provide a safe place to treat this highly infectious disease away from the general population.  The buildings are well maintained, very open (lots of ventilation) and sterile, as one might expect. 

There is a guard at the front gate (not sure if he is to keep people in or out) and once you pass him you move on past the mortuary sitting prominently near the entrance (also with a guard outside - ??).  Just down from the Mortuary is the Women’s Ward.  After you enter, you put on a paper mask and then find your way to the patient you are seeing.

The first time I visited Nomsa there were ten women in the ward with her.  She is 24-years old and most of them were around the same age, except for the 12-year old who was the youngest one there.  Each of these women are in for very aggressive treatment which includes 18 pills at 10 AM every day followed by a very painful injection in the hip.  They get 4 more pills at 10 PM and those are there MDR-TB medication.  All of the patients are “co-infected” so they are all HIV positive and are automatically put on Anti-retroviral medication as soon as they arrive IF they are stable enough to endure it.

This treatment is done for a MINIMUM of six months and can last up to two years.  The treatment has terrible side effects including daily violent vomiting, total hearing loss and psychosis.  While we all read the possible side effects of various medications that we take, we rarely see those side effects manifest themselves.  In this case, many (maybe even most) have the side effects of these drugs.  It seems that they all spend time vomiting after their meds.  Of the ten women in the ward on my first day, half of them were totally deaf and my friend Nomsa has ringing in her ears after only a month of treatment.  Of the ten women in the ward, four of them had extreme psychosis and would yell out for help, talk to invisible people, crawl around naked on the floor or urinate on the floor in front of you

I have been to the hospital to visit Nomsa six times in the past month and I have not yet seen one other person visiting in the ward.  I have seen the odd person standing outside, distant from the patients so as not to catch anything. (It reminded me of the scene in the Valley of the Lepers in the movie “Ben Hur” when people would hide behind rocks and peek at their loved ones from afar too afraid to go near.  I can’t say I blame them).  Inside the ward there is no radio, no tv, no books, no sound, no calendar to mark the day, no color and a lot of death.  But it is clean, appears to be professionally run and is clearly the only hope these patients have of survival.

On Friday I stopped in for a quick visit and to let her know that I would be away for the next two weeks traveling.  I took her some much needed protein and prayed that she would be alive when I returned.  MDR-TB patients who are also HIV positive can take a bad turn and die in a matter of weeks.  In fact of the ten patients who were there at the beginning of the month, five of them have died.

On Wednesday my friend Wendy was here from the US volunteering to distribute TOMS Shoes and help out at the El Roi baby home.  We had to take Leah and Rachel in to be tested to see if they contracted MDR-TB so Wendy agreed to go in and spend some time visiting/ministering to/encouraging Nomsa while we took the babies to be x-rayed.  The twins test was negative so we believe they do not have TB and now can come out of the isolation room at the El Roi Baby home and join the rest of the family.

Nomsa looking at her twins from a distance.  A very moving and difficult moment.
When we went back to pick Wendy up I took my usual walk around the ward to visit and encourage some of the women there.  There was one woman who had been very sick the past few weeks. She was just skin and bones and lay naked with her boney arm stretching out to us for help. Her eyes were stretched open wide and white as snow.  She cried out to us and said, “Help me!  I am dying!”  It was a horrific plea from a woman who had no hope left in life. We held her hand, rubbed her arm and tried to comfort her with words that seemed empty, but Nomsa reminded us that the woman was totally deaf from the treatment and couldn’t hear us. We had large protective masks on so she couldn’t see us smile or read our lips as we prayed wit her.  We all tried to smile with our eyes and prayed to God to help her.  When I returned yesterday, she too had died.  Nomsa said when the time came for the woman to pass away she started wailing and screaming.  Nomsa said it was terrifying, and then she was silent.  It was over.

While my heart ached for Nomsa and the other women in the ward who have now seen six women die horrific deaths in the past month, I can’t even begin to imagine how the 12-year old girl is processing and surviving this all.  Please pray for her and the others who are fighting for their lives.

We had the great privilege of meeting one of the founding Doctors at this hospital. He was more than helpful, informative, educative and very willing to help us in any way that he possibly could.  I look forward to continue learning from this man as we continue on this journey together.

As I was waking up a few mornings ago I had a random thought float through my head.  I recalled the book “Tuesday’s with Morrie” and wondered if Nomsa might be willing to allow me write a blog called “Wednesday’s with Nomsa”.  To me, Nomsa represents the women of Swaziland.  She has lived in poverty, but had hopes and dreams. She found love and then lost it. She had babies, and then had to give them away. She was a vibrant, smart, educated young woman and then became infected with HIV due to choices that she made or were made for her.  There are so many layers to the social situations happening here in Swaziland that maybe we could peel back many of them and take a peak inside through this one bright young woman. 

I have asked her if she would allow me to sit with her every second Wednesday and write her story.  She is thinking about it while I travel. I hope that you, the reader, might be interested in doing a little more reading every other week and go with Nomsa and I on this journey.  It won’t be pretty, but hopefully will be insightful.

On Tuesday Chloe and I will get on a plane and head to Asia for two weeks. We will spend several days in Taiwan visiting the Morrison Academy where Chloe will attend school in August. Then we will head to Japan to officially launch HEART FOR AFRICA –JAPAN. I look forward to sharing all that God has done and is doing in Swaziland with our friends in Asia, but I will be happy to get back home to visit my friend Nomsa again.  Please join me in praying for health and safety as we go our different direction this week.

Live from Swaziland … pondering life.

Janine



17 comments:

  1. What a hard week. I'm glad Leah and Rachel are okay. If you'd like to learn more about MDR-TB without reading a medical textbook, I highly recommend the book about Dr. Paul Farmer by Tracy Kidder called "Mountains Beyond Mountains." He's a doctor who has been setting up high quality hospitals and clinics in some of the poorest areas in the world.

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    1. Thanks Emily. I have heard of that book, but didn't know what it was. I have ordered it and a friend is bringing it in early Feb. Thanks for the great idea! I love books like that.

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    2. Hey Emily - I got the book. It's great. Thanks for recommending it!

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  2. My goodness... I just read your blog out loud while Steph listened in, too. My heart just aches, and it took lots of composure to put myself back together so many times. The hospital sits just outside out our Moneni CarePoint and each time I'm there, I gaze across the road and wonder what's inside the walls. I love you, Janine. Thank you for what you do, day in and day out. I know it's all Jesus, but you needed to say "yes"... and you are your family did. We'll be praying for health and safety -- for you, Nomsa, and the others in the hospital.

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    1. Thanks friend. I didn't know you were in that area. Come with me one time and meet Nomsa. She has given the okay to write "Wednesdays with Nomsa' so I will be there often.

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  3. What a week. They do just keep coming. I wonder if you could get laminated pictures to use with the women at the TB hospital. Or maybe even put pictures in zip lock bags.This may give them some peace and connection. Just a thought. I have had it work here people I could not verbally connect with.

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    1. Funny you should say that - I took in the photo of her twins and our family with all the babies. Put in zip locks and they are taped to her bed. :) I took in a journal yesterday to help her write her thoughts, follow the date, track her health etc.

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  4. God be with you and Chloe in your travels and in all the work you do in Japan.

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  5. thank you Janine for taking the time to share these stories with us, over and above all that you do in each day & your family & staff do each day & each week for the children and the women like Nomsa. Praying for them & for you.

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  6. Heavy Duty. I look forward to reading Nomsa's story as it reveals the many many layers of the plight of women in Swaziland. May God help them and may God bless and keep you and yours Janine my friend.

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  7. Heart breaking. As a nurse my question is if these side effects can be managed with anti emetics that we use here for chemo? They may not have access to the drugs. With daily vomiting and no IV's and help they can't survive. I have a lot of questions about this.
    Drug resistance to many diseases is happening everywhere. This is horrible. MY greater concern is that these women are acreaming because they are entering hell. Believers have no terror in death.
    How can you share the gospel with them? Do you have evangecubes? My heart just breaks for you.

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    1. Thank you Karen for your thoughts and prayers. I have taken bibles to any of the women who are in a state that they can read. They have started a small bible study together which is exciting. I am hoping to see Nomsa today and start my blog today. I pray that she is as well or better than when I left her a couple of weeks ago. Thanks for praying with us.
      Janine

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  8. Thank you for your blog Janine. My sister was recently diagnosed with TB and this hit home, as I read I began weeping thinking about those poor girls. I spent a month last year in Big Bend, Swaziland through the World Race and I absolutely love the beauty of the country and the people. Your blog as made me want to return. Praying for you daily!

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    1. HI Maggie - thanks for your post. I am so sorry to hear about your sister. I will pray that she gets well soon. We are very interested in the possibility of having the World Race come to Project Canaan. I have sent several messages to people, but obviously don't have the right contacts as I never hear back. Can you email me at janine@heartforafrica.org and maybe let me know how or who I can contact about having a team come here? many thanks! Janine

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