Wednesday, September 11, 2013

Chapter 14: She ran away, and then came back a month later.

Rachel and Leah are 10-months old
This month has not been easy.  I left to take Chloe to school in Taiwan and Nomsa ran away from the hospital. Well, technically she was given a five-day pass and then decided not to return. She was lonely, hurting, very afraid and needed time alone to think.

Nomsa asked me what she should do? Should she start the treatment for XDR-TB* (she doesn’t know that only one person has been cured of XDR-TB in Swaziland through treatment)?  How much would she suffer with the side effects of another layer of medication?  Would she be better to go home and die alone?  How long would that take?  Her questions were heart wrenching and not having an answer for any of them was even worse.  I am a problem solver, but I can’t solve this problem.


Here were her options: 

1.              Stay at the TB Hospital in an isolated room and begin a minimum of 8-month new treatment regime (see photo of one months supply including daily injections), suffer from new side effects and a high likelihood of losing her mind while she watches others die through the tiny window of her door.
2.              Leave TB Hosptial and go to her homestead where there are no people, no food, no electricity and no clean water.  A nurse would have to come and give her the daily injection, but without any food her body would succumb to the medications themselves.
3.              Pretend she is fine, go back to a life of prostitution and infect an infinite number of people with XDR-TB and HIV/AIDS.

Nomsa spent the last month praying, thinking, reading her bible, and praying some more.  She asked me again and again what she should do?  What could I say?  I can’t begin to put myself in her shoes and really understand what she was/is going though.  By staying away from the hospital she had effectively made the decision to not take her TB treatment and that effectively was a death sentence. But wasn’t taking the medication in the hospital almost also certain death?

Last week she contacted me and said she was going back to the hospital. If they would agree to treat her at home, she would start treatment again.  If not, she would not return to the hospital to stay and take the treatment.  We met up outside the pharmacy and I helped her pack eleven boxes of pills and a huge box of injections in to her large purse.  These would last her a month and then she would return for the next prescription refill.
Nomsa's new cocktail - one months supply.
The really sad part is that the Doctors have no way of telling Nomsa WHICH of the drugs she is actually resistant to.  Sadly the government is lacking the funds to pay its bill at the facility in South Africa that reads those results. Fortunately for Nomsa she/we have a mutual friend who has a friend who can help us get her test results.  I had her go to a different clinic in Manzini and she gave them a Sputum sample on Monday of this week.  They are sending it to Belgium for free (as a personal favor to my friend) and we will know in 8 weeks which of the drugs she is resistant to (or if she is resistant to them all, which is a strong possibility).  For now, we have 8 more weeks to pray.

On Tuesday Nomsa called me and said that the government had just run out of funds to provide health care workers to go in to the community to give the injections to TB patients.  She was distraught because without that person giving her the injection and without that part of the treatment she would not be able to continue it all.  Later that day she was offered a room at her Uncle’s house so that she can live there and go to a local clinic for her daily injection.  She was happy again.

I am not going to lie here … I am highly suspect of this “Uncle” who didn’t care about her before, but now that she looks and feels healthy (and she is a beautiful young woman).  Nomsa assures me he is a “man of God”, but I pray for her safety if she goes to live there.


I just called her on the phone so that I could give you all an up-to-the-minute update and she said that the Uncle has told her to “hold” on moving as he doesn’t have a room ready yet.  She also said that a man showed up unexpectedly at her homestead today and gave her a very large bag of mealie meal (ground maize) and some soup stock (dried for flavoring the maize).  She was astounded and thankful for the provision of food.    You and I are likely thinking the same thing … who is this “good Samaritan” and what does he want?  I have no answer for that.

That is my report for this week.  If you are confused, it is because it is confusing.  If you are heart broken, it is because this is heart breaking. If you are called to pray more for Nomsa than ever before, it is because you are called to pray. Remember, Nomsa represents thousands/millions of women in Swaziland and other parts of Africa and the world who are living with and dying of TB and HIV.

Let us pray together.

Janine

*XDR-TB is Extremely Drug Resistant Tuberculosis



Wednesday, July 31, 2013

Chapter 13: Now what?

Last Thursday Nomsa ran away from the TB Hospital. She sent me a text, which read “Janine, I am so sorry I disappointed you.  I wanted to stay, God knows I did, but hey, the devil caught my weakness.  I am on the road and I just don’t know where I am going because I have no money.”

I called her immediately on the phone and found her sobbing, sitting outside a pizza restaurant in Manzini.  She told me that a nurse left a note on her bed saying that her tests had come back positive and that she would be moving in to an isolation ward the next day.  WHAT!?  Why a nurse would do such a cruel thing I will never know, but she did, and at 6PM Nomsa ran out and under the barbed wire fencing.  She could walk to Manzini, but how would she get to her very rural homestead without money?  There was only one way.

Through an act of divine intervention I was able to contact some friends who were closer than I was and they got to Manzini, spoke with her and between many phone calls and physical hugs we were able to convince her to go back to the hospital, even just for 24-hours until we could all meet in the morning to discuss what happened and what it really all meant.  In fact, these “angels” literally snuck her back IN to the hospital.  One they won’t soon forget. 

My mom used to tell me that everything is better in the morning, and she was almost always right, but I am not sure that was true in this particular case.

I posted a prayer request on Facebook that same night and said if anyone wanted to send her an email with a message of hope to send it to me and I would take it to her in the morning.  Within 12 hours I had 26 emails from all over the world to print out and take to her.  It was a wonderful site to see our printer pumping out words of encouragement to, in most cases, a total stranger.

When we got up the next morning, Chloe and I headed to the TB Hospital to see if we could convince Nomsa to stay at the hospital until her results came back in 5-6 more weeks.  When we arrived we learned that the doctors were going to tell her that she in fact does have XDR-TB and that she would be moving in to an isolation room (ideally alone, but with space restraints she would have another XDR-TB patient with her… which kind of defeats the purpose of isolation).  The BBC/PBS film crew was there to film the news and her response (I want to add that these people are awesome and are doing a wonderful job of telling a horrific story that must be told if the western drug companies are going to help). 


It was heart breaking, to say the least.  Chloe and I had to stand back and watch because we couldn’t be in the film shot (it would complicate the story) and so we stood at a distance and wept with her and for her as she was told the bad news.

While the doctors didn’t tell her this part, the truth is that no one has lived with XDR-TB in Swaziland with the treatment that is available here.  They/we all have the hope that she will be the first XDR-TB patient in Swaziland to be cured … or healed.

The camera stopped filming, the doctors moved on to the next patient and we stayed behind to hold her and love her. She told me that she would not spend one more night in that hospital and I couldn’t blame her, but where would she go? What would she do?  If she left the hospital she would die. If she stays at the hospital, she will die.  Its all a matter of time, which of course is true for all of us isn’t it?

(Go to http://janinemaxwell.blogspot.com/2013/07/nomsa-confirmed-to-have-xdr-tb-and.html to read about the miracle that happened with that woman BECAUSE of Nomsa’s intervention and care).

Here is the difference.  If she stays at the hospital she will be in an isolated room, with no access to other patients in the main wards (where she has had a wonderful ministry).  The treatment is most likely to make her deaf, she can become psychotic along with other side effects of these highly potent drugs.  And then one day, in the next few months or year, she gets sick, and dies.  If she goes home, she has no one to love her, care for her, there is no food, there is no electricity, there is no hope, but there is freedom and she can choose to stay or not stay on her treatment there.

I don’t honestly recall a time in my life that I haven’t had multiple solutions to any given challenge or problem, some of them better than others. But honestly, I don’t have one for this one. I can’t solve this.  I can’t fix it.  But what I have learned is that I  am not supposed to fix it. I am to leave it all at the foot of the cross and watch what the Lord does with it.  Easy?  HA!  No. I wake up at 3AM and think, think, think until my brain cramps.  Then I pray for peace, and it does come.  I don’t mean to make it sound easy or that I am some Super-Christian. I am not. I find myself angry, frustrated and cussing!  None of those things seem to change the situation.

Today I went in to Chloe’s room to say “good morning”. It is only one week until we pack up and travel to Taiwan where she will spend the next two years finishing High School.  She was writing a blog when I walked in.  I encourage you to read it at:  http://chloemaxwell.blogspot.com/2013/07/sitting-in-silence.html.

I was blown away.  I was speechless. I am thankful for all that the Lord has brought us through in the past year even if it was for the key insights that Chloe has been able to articulate in her blog. It has been a hard year for us all, but Jesus has always been with us, He has never left us nor forsaken us and He will not leave us now. He will not leave Nomsa now. He will not leave you now, no matter how bad things seem. That is a promise from Him, not me.

On Friday Nomsa asked the doctors for a five-day pass to go home and think, pray and process.  I gave her Manna Packs so that she had healthy food to eat while she was there and didn’t have to make poor choices in order to eat.  She promised me that she would not be involved in any activity that could potentially infect another person with XDR-TB or HIV.  I believe her for these five days.

I called her on Saturday to tell her about the newborn baby whose life she had helped save.  Our friends visited her on Sunday to check in and she says she is going back to the hospital this week. I called her just now as I was writing and she says she is listening closely for God’s voice, a voice in the wilderness for sure.  She told me she had two more days, and that she knew He would speak to her. I know He will. He is El Roi, the God who sees us all.

I don’t know what will happen next.  I couldn’t have predicted any part of last Friday, but I am thankful to be a tiny part in His HUGE plan and to see His mighty hand so clearly.


Thanks for reading and for praying with us.  Our prayers are not going unheard – just read Chloe’s blog to really believe that.

Janine

Tuesday, July 23, 2013

Chapter 12: The real truth. What would you do?

Sitting 5 ft away, down wind from MDR-TB patient outside.
It’s been several weeks since I last wrote a Nomsa blog.  It is not because I haven’t gone to see her on a regular a basis. It is not because there is nothing to say.  It is not because the news it’s all good so there is no “story” to tell. It is simply because I just don’t know how to write what I need to write.

My head and my heart hurt.

My learning curve on Tuberculosis (TB), Drug Resistant Tuberculosis (DR-TB), Multi-Drug Resistant Tuberculosis (MDR-TB) and Extremely Drug Resistant Tuberculosis (XDR-TB) has been steep to say the least.  In fact, there is so much unknown and so much under study that answers seem to change depending on who you ask and when you ask, or at least that is what I thought.

Sadly, I think I wasn’t getting a straight answer because no one had the heart to give one to me, until I met the Producer/Director of a Documentary film being done on MDR-TB. She is a reporter. She has investigated and learned. She speaks the truth.  The truth sucks.

The doctors are 99% certain that Nomsa has XDR-TB.  All patterns of testing are pointing directly there and they are only waiting for the last DST test results to confirm it.  When this woman asked them directly about Nomsa last week they said that they would move her in to an isolation ward now if they didn’t have someone in there with a highly infectious case.  Nomsa’s sputum is not infectious right now, or at least it wasn’t when last tested, but that doesn’t mean she won’t be infectious tomorrow.

What is the prognosis?  Can’t get a direct answer from a medical professional, but the Documentary film maker says there has been no one survive in Swaziland with MDR-TB.

What happens if /when she gets the DST results and they are negative? She moves into an isolation room, until she dies or until she demands to go home and die.

Can we build room for her at Project Canaan that would be safe for all of us and safe for her? Yes.  Will she get sick there (from chicken pox or the flu or a cold) and have to be rushed back to the TB Hospital in the weeks/months to come?  Yes, unless she is healed (which I do believe is possible if it is his will).   Are there risks for those of us here?  Yes, but can be calculated and mediated by education and government support.  Will she need an injection every day for the rest of her life along with dozens of pills? Yes.  Can we facilitate that? Yes. Will it be easy?  No. Is it wise?  Each of you will have your own opinion.  What would you want if you were Nomsa or if she was your daughter?

Poster at the TB Clinic explaining transmission prevention.
To say I have lost hope would be untrue because I believe in a God that is bigger than any level of Tuberculosis.  To say that I am hopeful would be an overstatement. If her test comes back negative and they pack her in to the isolation room, what do I say?  What do I do?  What would you do?

Truthfully, my heart is breaking. There is a lot going on in my world these days that is hurting my heart, and this is just one of those things.  But I know that El Roi sees me too and I pray for His mighty hand of protection and healing.

That is all for today. It’s Tuesday, so consider this last Wednesday’s blog.

Janine

PS – read janinemaxwell.blogspot.com from last Saturday and you will see what Nomsa was doing to save the life of a pregnant woman at the hospital and her unborn child. There is no question that God is using her in a mighty way and has her there “for such a time as this”.  I am eternally grateful to know this remarkable young woman.

Thursday, July 4, 2013

Chapter 11: bad news week. He will have to make a way.

 
Today is not Wednesday, it’s Thursday and I just haven’t known what to write after a few silent weeks and bad news yesterday.

Let me start by saying that I began my day on Wednesday taking a young girl to the hospital to seek pregnancy care.  According to her records she was almost 3 weeks overdue and went it to labor nine days ago, dilating 2 cm and then stopping.  So many things around this girls story seem untrue, but we have been trying for weeks to navigate through truth and lies with layers of grace in-between.  The doctor concurred with the information and decided to induce the girl today.  We were to drive her home, find childcare for her two other young children and help her get organized for a day away from home.  How hard could that be?

As we drove away from the hospital yesterday I got a call from Nomsa … the dreaded call.  Her culture came back and it is positive. Not what we had all hoped and prayed for.  I was shocked really, but then again, not really.  The doctors had tried to prepare us all for what they had feared (and expected) most.  I could hardly understand what she was saying on the phone other than that she wanted to die.  We were only ten minutes away from the hospital so with pregnant woman and her 14-month old baby in the back seat we went straight to the TB hospital to try to calm/encourage/love Nomsa. 

Audrey Wright, one of our summer interns, was with me as was Bongiwe from the Baby Home.  None of us had this in our plans for the day.  It was awful. When I got the call I was parked in downtown Manzini and fell apart. I knew that tears would not and will not help solve this, but they came out unsolicited.  After a bit it was time to suck it up and head to the hospital to make sure that Nomsa did not take her own life, or run away.

But what could I say to her, really?  What words are there to encourage someone who has possibly just been given a death sentence?  Yes, there are words of hope from scripture that should be the only thing that I use, but my human side just didn’t want to face her at all.  So, we did what any good friend would do, we stopped and bought a Black Forest Cake and some French Fries to bring with us.


But really.  What would we say?

Here is the gist.  Everyone around her in the ward has either died or has been discharged.  Nomsa is on “month #22” of treatment for Multi-drug resistant Tuberculosis and is not getting better (although she looks perfectly healthy to look at).  Now they have to run ANOTHER test that will take ANOTHER 8 weeks to find out if she has become Extremely Drug Resistant (called XDR-TB) or if her body is just exceptionally slow at healing from the treatment (not likely according to her long treatment).  Either way, she has many more months of treatment at the hospital ahead and I don’t think she is willing to do it. 

When we arrived we hugged and cried.  Then it was time to talk the hard talk, but she wasn’t in the mood, and neither were we.  So we said very little. Instead I spoke to the nurse and then finally the doctor to try to understand where we are and where we are going.

Here is the bottom line. She has a long haul ahead and frankly the odds are nowhere near in her favor.  If you Google “life expectancy with XDR-TB” it doesn’t paint a good picture (plus it is really hard to even understand).  She knows what the future looks like because she has watched so many people go down that path and not return.

The good news is that she is a remarkable young woman and knows that God is with her each and every day. She just doesn’t want to be there, and I get it.

My fear, honestly (and she will not be reading this blog any time soon), is that she will quit. She is losing her hearing already and some eyesight.  The psychosis that comes with the medication does not help her understand that running away “home” (to a mud hut with no food, clothes, water or support) is a death sentence.  And if she does run away, how many people will she infect before she is too sick to walk.

Sorry that this blog does not have a happy ending.  For anyone reading this I call for your prayers for Nomsa and for us.  There is a way that we could help her, but it would take a lot of work, negotiations and some risk. It is too complicated to explain and frankly we are still thinking/praying it through.

Nomsa has promised me that she won’t run away or commit suicide for a week while we speak with doctors and see if there are any options available that are viable and even remotely practical.  I pray that she will keep her commitment and I believe that she will.

When I turned 25-years old my cousin Kim through a birthday party for me and we all wore tags that said, “Where there is a Willis, there’s a way!”  My maiden name is “Willis”, and she was poking fun at my determination. J  I fear that this time “Willis” can’t find a way. But even as I type that I am reminded of the song that says, “God will make a way when it seems there is no way.”  I am clinging to that absolute truth today.

Janine

PS – the girl has not given birth yet.  Maybe she will have her baby on Chloe’s birthday… tomorrow, July 5th.  Happy birthday Chloe!  xoxo

Wednesday, June 5, 2013

Chapter 10: Seizures and strokes are just a part of life with MDR-TB


Last week Baby Rahab (living at the El Roi Baby Home) was not doing well. She started vomiting and had bad diarrhea.  Within a day she needed to be hospitalized because she became so dehydrated and in the end we learned that she had pneumonia.  She has been in the hospital for almost a week now.
 
At the same time Rahab’s mother was in the TB hospital fighting for her own life.  She also took a bad turn last week and by Friday night Nomsa was afraid that the lady wouldn’t make it.  At 11PM the mother started to shake and had seizure after seizure, scaring Nomsa terribly.  She tried texting me to ask me to pray, but I was asleep so she prayed on her own.  A short time later the mother had a stroke and was left unable to move on her left side (leg, arm, neck, head). Finally she went to sleep and slept throughout the day on Saturday, only waking on Sunday morning.

We had a small team of women volunteering in Swaziland last week working on designs for knitting, crocheting and jewelry designs that we can have women make at the Khutsala Artisans Shop at Project Canaan. One of our long time volunteers is Becky Fern and she had sent some crochet materials for Nomsa to get started with.  On Sunday I took Becky and Eleasha Bailey to meet Nomsa, visit Rahab’s mother and do a bit of crocheting.

When we arrived we saw Rahab’s mother lying on the floor (they had put her mattress on the floor when she was seizing so badly).  She was hooked up to an IV and clearly couldn’t move the left side of her body or turn her head at all.  It was so very sad to see her naked, with her skin and bones body lying under a wool blanket, waiting to succumb to a horrific death.  We shared words of encouragement through and tried to smile big behind the mask so that our eyes showed her love and joy (since she couldn’t see our mouths).  We gathered together to pray for her and Becky spoke words of healing and peace over her.  Then we went outside to talk.

I wanted to speak with Nomsa about the very real possibility that her next Culture test may come back POSITIVE.  It was such a huge disappointment (train wreck) when she got the positive test last time and she knows that another positive means that her Multi-Drug Resistant Tuberculosis has become Extremely Multi-Drug Resistant Tuberculosis (see http://en.wikipedia.org/wiki/Extensively_drug-resistant_tuberculosis), which very few people in third world countries can survive.  If she is positive, it likely means life in the hospital or going home to die.  How does one prepare for this kind of news?  She didn’t want to talk about it, and neither did I, but we had to.  We had to have a plan (at least psychologically) so that she didn’t just decide to quit, run away and “live life” until she died (leaving a wake of destruction behind her) if her test results come back positive.

The conversation was mostly focused on God’s plan for her life and that while her plan was to leave the hospital maybe HIS plan was to use her there.  Afterall, Baby Rahab may not be with us if she hadn’t intervened and told us about the baby.  She agreed, but like us all, wants her plans to be brought to fruition. We had a good visit and Becky was amazing at teaching Nomsa how to crochet. She is making herself a blanket and has time to work on it while she waits for her news.


We left that hospital and headed for another hospital to check on Baby Rahab.  As of today, Rahab is responding well to the antibiotics and is gaining weight back. She will be 12-weeks old tomorrow and is just 6.1 lbs today.  When she hits her target weight of 6.4 lbs we can bring her home.



As we were driving back to the farm I got a call from Nomsa. She was screaming and again, I thought the worst. Surely the mother had passed away.  But no, it was screams of joy. I put her on speakerphone and we could hardly understand what she was saying.  After she calmed down she spoke again and said, “Janine, it is a miracle!  I have witnessed a miracle!  I was down on the ground trying to feed the lady when suddenly she moved her left hand.  She actually reached up and touched me with her left hand!  Her whole arm suddenly moved and I witnessed a miracle today!!”.

Nomsa was beyond excited.

I said, “Now Nomsa, aren’t you glad you are at the TB Hospital today?” 

And believe it or not, she said, “YES!  I am SO HAPPY that I am here an nowhere else!”. 

Why?  Because she would have missed seeing the hand of God at work.

This is a long hard journey, but I continue to be amazed by people I meet and their will to live.  I pray for complete and total healing for Nomsa and Rahab’s mother. Imagine if they could one day both be discharged and come and work at the Khutsala Artisans Shop on Project Canaan.  Now, that would be cool.

Janine

Thursday, May 23, 2013

Chapter 9: Nomsa is still at the hospital.




I really can’t believe that I am writing this blog today, only 24-hours after I told you that Nomsa was coming home.  Brooke and I went to pick her up today and things went very badly.

When I arrived she was all packed up.  I brought her a suitcase that was large enough to put all of her small bags in. She had already given away the food that  I had brought her to help improve her health (peanut butter,  cereal, milk, peanuts etc) to the mother of Baby Rahab, trying to encourage her to eat and live. 

We took all her things to the car, she said her goodbyes to her friends. They all walked her down and gave hugs and kisses with promises of a visit soon. All we needed were the pills that she would continue to take to finish her treatment to insure that she didn’t “drop out” of the program again, as she had several times since she started her TB treatment in September 2011.

The nurse came out with bags of medication and many vials of what she would need to inject each day in to her hip.  That is when the red flag went up.  Injections were only given to patients who were still infectious.  When I asked the question the nurse confirmed that she still needed them and someone would have to go to her isolation room each day to give her the injection and pills.

STOP!

What did she mean isolation room?  Infectious?  Nomsa was moving to our Farm Manager Building where the rooms are open to each other above the wall. 

I asked the nurse how she could have been discharged under these conditions and she took us to the nursing room and showed me the papers.  They said, “Discharged at the patient’s request”.  Oh, Nomsa. 

Three hours later we had met with nurses and the Senior Doctor himself to find out what the situation was and how it was that they were discharging her.  In summary, Nomsa really wanted to leave the hospital (and who can blame her).  She pushed and pushed (I understand that) and finally convinced them that she could continue her treatment at home.  They went to her file and called her brother (next of kin contact) and asked if she had an isolation room to go to at home. He said yes.  They asked if she was welcome to go home.  He said yes.  They discharged her, with hesitation, but they agreed.  What they didn't know what that there is no one at that homestead (which is why she is welcome to stay there in isolation – it is empty).  There is no way to get food, medical treatment or support.  But most importantly, that is not where she was planning on going. 

I believe what happened is that she convinced them she had a place to go, they didn’t ask where (why would they – they would assume “home”) and they got enough confirmation to agree.

It was devastating.  And there is more.  She still needs to wait to get a “NEGATIVE” Culture in order to be discharged (another month of waiting), but they are concerned that because of her past drop outs and behavior and positive tests that she will be XDR-TB positive, which is the last stage and worst of Tuberculosis.  We pray that this is not the case.

She sobbed and sobbed and demanded to go home.  She said she would run away, which is a death sentence in and of itself.

The nurses were wonderful and spent a long time counciling her, encouraging her and trying to get her to understand.  Finally, I went down to the car and brought all her things back up to her bed.  Unpacked her, put the photos back on the wall and then found her crying on the staircase. 

Please pray with me for her desire to continue to live, her obedience to stay in the hospital until her test comes back, and her assurance that God has a plan for her life.

I came back home and slept for two hours, absolutely emotionally exhausted.   Now that I am up again, I am reminded that His plans are not our plans and while I desperately want her out of that hospital because I would feel better about it, I must want her to be there if that is still a part of His master plan.

Thanks for reading and praying with us.

Janine

Wednesday, May 22, 2013

Chapter 8: Nomsa is being DISCHARGED from the hospital tomorrow!

Nomsa's twins Leah and Rachel.
Today I am filled with joy and thanksgiving.  I got an SMS message (text message) from Nomsa asking me to call her.  It took me a while as Ian and I were in an all day attempt to get our Drivers Licenses renewed, so I didn’t call her right away. Five minutes later I got another message to call her so I feared the worst.  When she answered the phone I could hear joy in her voice and she almost screamed at me, “Janine, they have just discharged me from the hospital!”

What??  Only two weeks ago they told her that her Culture had come back positive, not for Tuberculosis, but for another lung infection that she had picked up at the hospital.  They said it should be cleared up in a month, but already they have test results back which show that she is no longer infected with Multi-drug Resistant Tuberculosis OR the other new infection. She is ready to leave the hospital.

Wow.  I am in awe.  Our prayers have been answered and just yesterday we started clearing the land for the Sicalo Lesisha Kibbutz where Nomsa will be able to live, work and grown in safety. 

I had to tell Nomsa that I couldn’t go and pick her up today, but would come tomorrow. I expected to hear her disappointment, but instead she said, “That’s okay Janine. I sill have work to do here.  The woman who is the mother of Baby Rahab is refusing to take Anti-Retro Viral medication so I will spend time today trying to convince her that she must take it to live.”

I told Nomsa that Baby Rahab (who is now living a the El Roi Baby Home) is HIV negative and Tuberculosis free so her mother has a good reason to take her medication and live. Nomsa has a mission for the next day and I pray that she will succeed.

Future site of the Sicalo Lesisha Kibbutz.
No one can predict the future and I don't know how it will go for Nomsa, but I do believe that she is mentally, physically and spiritually ready for a fresh start.  “Sicalo Lesisha” means “New Beginning” in siSwati and that is what she will get. Nomsa will move in to the Farm Managers Building on Project Canaan temporarily and will live there until the Kibbutz is built.  She will work on the farm (likely at the Khutsala Artisans Shop) and be a part of starting the jewelry making/sewing/crafts team.  She will remain on TB medication for months, but we can help manage that here at the El Rofi Medical Clinic, which should be open in June.  El Rofi is the Hebrew name for the “God who heals”.  I believe that Nomsa has been healed and has been given another chance.

Tomorrow she will come to Project Canaan for the first time and she will see her babies, Rachel and Leah for the first time in months. I have tears of joy just thinking of that reunion. I will take a photo and post it in this blog after she has been with them.   They will not go and live with her until she is fully healthy, stable and ready to take them.  That may be a year or two down the road, but these two babies will not be orphans.  What a great beginning to a new chapter.

From now on, this blog really will be Wednesdays WITH Nomsa.  Thanks Beth Blaisdell for pointing that out J.

Doing the happy dance in Swaziland.

Janine


PS – the sign on the door as you leave the hospital says, “Thank you for visiting me. Please come again”.  Nomsa and I will surely be back to visit others.

Wednesday, May 8, 2013

Chapter 7: Bad news, then some good news arrived.

 
I received an urgent call from Nomsa last Friday.   She said that the nurse came by and told her that her results CULTURE test were back and she wanted to discuss them with us.  Nomsa asked me to call her so that the nurse could explain the results to both of us.

I was in South Africa at the time and did not have a good cell line, but what I did hear clearly was that Nomsa’s culture came back POSITIVE, not NEGATIVE as we were praying for.  Not only that, the positive test showed a NEW lung infection called MOWT.  It wasn’t there last time she was tested, but now she had another infection! I could hear Nomsa crying in the background while the nurse gave us both the news.  We had both been praying that she would be leaving the hospital on the following Monday and that she would be moving to Project Canaan.  But no, she would be staying at the hospital for another 6-8+ months.

We were driving through McDonalds at the time and I just wept.  I know that God’s plans are better than our plans, and I instinctively knew that He was not finished with her at the TB hospital yet.  There was more for her to do, but I still cried for her.

I asked the nurse to keep a close eye on her over the weekend so that she didn’t harm herself and then I tried to calm her down as she sobbed on the other end of the phone.   We spoke several times over the next two days, and on Sunday morning after picking up Lori Marschall at the airport, we headed to visit Nomsa.

I told Nomsa on the phone that we would still celebrate her life together on Sunday and so we arrived with lollipops and fresh avacados for everyone in Nomsa’s ward along with fried chicken for Nomsa. 

We moved outside so that she could meet some of my friends (I only had 3 masks with me), but outside we can sit 3 feet away from each other.  She was so funny.  She made us all laugh with her approach to life, and then cry when she shared about the day that we met and she handed her newborn twins to a stranger. 


As we were chatting Nomsa’s nurse came out to meet me in person.  She said she wanted to better explain what the results meant. Then she dropped the real news… the GOOD NEWS!  Nomsa’s CULTURE actually came back NEGATIVE for Tuberculosis (which is what we were praying for), but POSTIVE for the MOWT.  What does that mean?  It means that she is no longer infectious with her Tuberculosis and that they were now treating her for MOWT, which should be cleared up within a month.  The nurse confirmed that she would have contracted MOWT in the hospital (good reason to get out!) and that they will run a CULTURE test again in a month and we await the result. 

I went back over to the area where my friends were sitting and shared the awesome news.  I am not sure there was a dry eye and while the news wasn’t all good news, it was much better than we thought it was! 

When we finished our visit and took Nomsa back upstairs to her ward to say goodbye she brought us over to a new patient who had arrived the day before.  She was very very sick (if she was admitted there it means she has HIV/AIDS and Multi-Drug Resistant Tuberculosis) and Nomsa told me that the woman gave birth a few weeks ago and the baby was in the hospital.  The woman had kind eyes and tried to smile, but then asked me if I could check on her baby.  I asked where the baby was and she told me.  That day (a Sunday) I was able to find the doctor who is caring for that baby to see how she is doing (yes, she is a girl).  I was told that they are waiting to see if the baby also has Multi-Drug Resistant Tuberculosis, then she was going to call me.  The very next day I spoke with the Social Welfare Officer who was letting me know about that baby. Today I received news that the baby is very very sick (vomiting, diarrhea, fever) and they are not hopeful.  But I am eternally hopeful that the baby will live and that maybe even the mother will live.  Stay tuned for more on this story.

Wouldn’t it be cool if Nomsa one day started to write this blog with her own stories of people in the hospital that she once was a patient in?  I am waiting expectantly for the next chapter of this story.

Janine

PS  - while I was speaking with the nurse my friends asked Nomsa if she knew how many people read this blog and how far reaching it is?  Her answer was simple, “I am here right now to support many other women that don’t have the support system that I have.” 

Thank YOU, the reader, for being that support system.


Wednesday, May 1, 2013

Chapter 6: My test results were lost!?


It has been four weeks since I was able to visit Nomsa.  When I saw last  her we were waiting for her TB Culture results to come back. If they were NEGATIVE she could leave the hospital. If they were POSITIVE she had to start the extensive treatment over again and was in the hospital for another 6+ months.  


Just after I left for the US we found out that her lab results had been lost.  Each culture takes six weeks to grow so they had to do another test and now we are waiting six more weeks for the results.  I know that everything is in His perfect timing and so I was anxious to hear how she was doing when I got home.

When I went to visit her I found her curled up asleep in her bed in the middle of the day.    She had been in bed for two days and was not strong emotionally.  The day before I visited her she had taken a double dose of her ARV’s accidently and was really sick, so tried to sleep it off.  Then this morning she told the nurse that she wanted to be discharged and leave the hospital.  The nurse reminded her that she can’t do that and that she must stay until she is well. It has been a long journey thus far, and it may be far from over.

So she got up, was happy to see me and started to unpack her “goodie” bags – roasted pork ribs, fragrant hand lotion a few PEOPLE magazines can sometimes bring light to a gloomy day.  Then I gave her a "Learn to Crochet" book and some yarn that my friend Becky sent for her.  We plan to her how to crochet so that she can be a part of the Khutsala Artisans Shop when she is discharged from the hospital.  After that I decided to show her some photos from my trip and we ended up looking at pictures from the first day we met at the back of the ambulance. It was an emotional time.  She never imagined that she would still be alive today, and honestly, neither did I.

Crocheting project from Becky Fern.
Nomsa had never seen a computer before. She was shocked at how small it was.  When I opened it my FaceBook page was there.  She had heard of FaceBook, but didn’t know what it was. Fortunately I had my “dongle” (cellular internet device) with me so I connected to the Internet, also new for Nomsa.  I was able to show her photos on my FaceBook page and then I took her to this blog site so she could see what people are looking at when they read Wednesdays With Nomsa. Each week I bring her a typed copy of what is written, but she hasn’t seen it in blog format.  To know that thousands of people knew who she was and were praying for her really started to sink in.

Nomsa looking at photos of her twins the day she gave them to us.
 Then I took her to the www.manna2go.com site where she watched a video of me telling a short version of HER STORY!  I hadn’t seen it myself so the two of us sat and wept.  To think that people around the world could hear about her, care about her, pray for her and even give financially to help build her a room while she stayed in bed and cried, was too much to imagine.  There were no words for her to express the emotion she was feeling so she just cried and shook her head.

Kayla Ferris putting out a challenge to help Nomsa.
 Then I decided to introduce her to skype.  By this time we were both getting excited.  She had never heard of Skype.  Suddenly there was Chloe inside the computer talking to us!  All the other women in the ward were standing behind her shaking their heads in sheer wonder.  Next, we Skyped my cousin Kim in Canada.  Imagine that?  These women who are suffering with HIV/AIDS and Multi-Drug Resistant Tuberculosis were able to talk to someone in Canada through a little machine on a side table at a TB hospital.  It was an exciting day that is hard to put in to words (I realize as am trying to type this).  The world suddenly became much smaller and the room she was in became much bigger.  Hope appeared in the form of a computer.

Nomsa and Chloe Skyping.
When it was time to leave Nomsa walked me to the top of the stairs.  She looked and me and cupped her hands together in front of her the way you would scoop water or hold a tiny bird.  She said, “I feel like the Lord is holding me in the palm of His hands and that I am safe and secure.  Even though I am sick and have been alone for a long time, I am not alone anymore.  He loves me and I know that for sure. I am okay now Janine.  You can go and we will meet again. I am okay.”

Once again, Nomsa showed me the power of the human spirit and the importance of faith, hope and love … the greatest of these is love.   

Janine

PS – The woman in the photo has been asking for a bible in siSwati for many many weeks.  I have had a hard time finding one, but found one on Sunday in a random box in our house!  When I gave it to her she screamed, danced, shouted and sang praises of thanks for giving her the only thing that she really wanted … a bible.  It was the perfect end to a great visit.

Doing a happy dance when she got her siSwati bible.

Wednesday, March 27, 2013

Chapter 5: What are those girls doing?

Chloe reading Chapter 4 to Nomsa under the tree at the hospital.

Last week when I met with Nomsa she told me a story that made me physically nauseous.  I went home and told Ian about what she said and he was speechless, then he said, “What kind of a man would do that?”   I spent the week thinking and processing what Nomsa told me, and today when we met again I asked her to confirm her story. Then I asked her permission for me to share it with you, our reader.  Nomsa reads every word that I write and she has allowed me to tell very private stories of her life, but this one was different. I didn’t want to get her in trouble, on the off chance that someone she knows reads my blog.  She is a brave young woman and said, “YES!  Tell them. It is the truth!”  And so I will.

As we sat under the tree outside the hospital told me this story.

“Janine, you know, not everyone has family or friends who will come and visit them.  Many people here never get a visitor. I think people are scared to come and visit in case they too become infected.  The lucky people, like me, have a visitor who will come to encourage them, but also bring good food to eat. They feed us here, but we need more protein.  We need more food because of all the medication we take and because we are so sick.  Some of the girls don’t get extra food so they become more vulnerable to “predators”.”

I thought to myself, more vulnerable? These women are all in advanced stages of HIV/AIDS AND they have Multi-Drug Resistant Tuberculosis AND they are in a remote hospital that no one wants to visit AND they are there for 8-24 months. Vulnerable to predators?

“Some of the men who are sick here will tell their friends on the outside that there are women here who need food.  Just the other day a man came with some fresh fruit and gave it to my friends. They disappeared for a while and then came back.  I wondered ‘what are those girls doing?’  Janine, they had sex with that man!  For fruit!

“Hey Janine, it happens a lot, but the girls don’t have much choice. They want to live.  The best price that is paid is KFC Chicken.  That one is the best I am told.  Can you believe it?  They have no hope.  They have lost all hope for their future and it makes me so sad.”

Nomsa shook her head and looked down to the ground.  While she could understand the desperation of young women, she really couldn’t get her head around how desperate they really were. And what about the men?  What kind of man would bring chicken or fruit to a patient who is dying of HIV/AIDS and highly infectious Multi-Drug Resistant Tuberculosis to have sex with them? Really??  Stop for a moment and think about that one if you would.

I am thankful for Nomsa and her courage to speak the truth even when she doesn’t want to speak it and I don’t want to hear it.  I said goodbye to her today, as I won’t see her for the next month because of my upcoming trip to the US. Her tears brought tears to my eyes and we hugged and committed to pray for each other. Imagine?  She is praying for me as I travel back to the United States of America to share with people who have ears to hear what is really happening here in Swaziland. I will stay in nice accommodations, eat nice meals, ride in nice cars and laugh with friends and family.  Meanwhile Nomsa sits in a hospital alone, with people dying all around her and waits to get her most recent TB Culture test back.   If it is NEGATIVE she can leave the hospital when I get back at the end of April. If it is POSITIVE she starts back at the beginning of a two-year treatment for a disease that wants her dead.   

We are committed to praying for each other. I can’t honestly say that if I were in her shoes that I would pray for my friend who was going off to the “land of the free, home of the brave”.  I think I would be selfishly be praying for myself.   But that is what makes Nomsa different than anyone else I know. She cares about others.  She wants to change her future and she knows that it starts by her actions in the present. 

Nomsa inspires me and challenges me.  I look forward to being back in Swaziland at the end of April to see her again, and hopefully to bring her “home”.

Janine

Wednesday, March 20, 2013

Chapter 4: I want to leave the hospital.



I can’t imagine living in a hospital for many months for years.  It seems that I might die of depression long before a disease killed me.  Maybe that is true of many of the people who have died of MultiDrug-Resistant TB here in Swaziland. It was just too much and they gave up. Too much pain, too many pills, too many injections, too much death, too many side effects, too much loneliness and so they give up hope and die quickly thereafter. 

TB treatment typically lasts from eight months to two years here in Swaziland, but if you become Drug Resistant you have to start the treatment all over again.  You start back at DAY ONE, with new drugs to see if they can win the war against the disease that is trying to take your breath and life away.

Nomsa was diagnosed with TB in 2007 and has been in and out of hospitals since that time.  This last time she was admitted in December 2012 and her expected stay would be until as early as September 2013, but could be many months past that.  In January 2013 Nomsa was unable to walk down the stairs by herself and often found herself crawling to the toilets.  She was really really sick.  But in February she seemed to be getting better very fast. She was putting on weight, laughed more, ate better and could walk without assistance or wheezing.  In March we started talking about what she would do when she left the hospital.  I knew it was many months away, but it might give her hope to think about the possibilities.

I quickly realized that Nomsa had no possibilities other than life itself.  I asked her to tell me step by step what would happen when she was discharged from the hospital. At first she had no idea what I was talking about, but I asked her tot ell me what it “looked like”. I am a visual person, which helps me with my writing, so I wanted to know what she was seeing as her first steps when she left the hospital after she was no longer infectious.  Here is what she said:

I will pack up my things in a plastic bag and walk to the front door.  The hospital will give me a ride home. They always give you a ride.  I am told that someone lost the key to my front door, but then it doesn’t matter because I think the door has lock has been broken for a long time. My home is a round building made of mud with a grass roof. The building has not been repaired in many years and it was really dirty when I visited last. A TB lady will come to my home every day to give me my injection until I don’t need that drug anymore – probably many months. I won’t be able to work until I get healthy again.”

I asked her how she would get food and she said, “I will go to my neighbors and ask them forsome food.  If I go with my bowl they will give me some if they have some.” 

I asked how long she thought she could do that and she wasn’t sure about the question or the answer. How could she plan? How could she know?  Why would she want to walk down that road in her mind, knowing that there was no job, no money, no one to provide any care for her, no way for her to get her children back with out any of the aforementioned things.  Why look to the future and think about it when there are no options. 


Nomsa represents thousand of young girls here in Swaziland who have the same problem.  Poverty eliminates options. With no options people lose hope.  When we lose hope we die, and sometimes we die a slow and horrific death because of the choices we make.

I like options and I like plans and so I tried to get her to dream.  Maybe this was not a fair or kind thing to do because how do you dream if you can’t think beyond how you will get your next meal. If you have no options, NONE, how do you “weigh your options”? The conversation didn’t get far so I tried a different tact.  I pulled out a map of Project Canaan and started to tell her about the farm and the agriculture and the vision for the future of the children and the women’s centers etc.  After I talked for a long time I asked her if there was anything there that she might like to do.  Again, it was a very unfair question.  Her answer was, “Yes, I would like to do anything!  Janine,I will do anything”. 

As we talked further I learned that she likes to cook. We both laughed when I told her that I like to cook too, but I don’t consider boiling dry maize in a large pot over burning wood to be “cooking”.  She would like to learn to cook. Maybe she would even be the cook at the Toddler Home one day. Imagine?  An idea?  A possibility? It is a dream that could very well come true, if only she could get healthy again.

This week is a week of waiting.  Minutes pass like hours. Hours pass like days.  We are waiting to get the results of Nomsa’s TB Culture that will tell us if she is still infectious or not.  If the test comes back NEGATIVE then she is no longer infectious and can potentially leave the hospital. If it is POSITIVE we have a whole different problem to face.  

If she is non-infectious my hope and prayer is that she will be able to come to Project Canaan and live here in temporary housing until we get the Sicala Lesisha Kibbutz for women built.  She can focus on regaining her strength and health while doing some work here.  Nomsa would still get an injection daily for her TB (given to her by our nurse on site) and that would continue until she gets a second NEGATIVE Culture. At that time she no longer gets an injection, but still takes her cocktail of pills for the balance of the two-year period.

If her test comes back POSITIVE and she is still infectious we must regroup.  Her last test came back positive, which was bad news because the drugs she was taking should have been effective in making her well. The POSITIVE result means that she has become resistant to more of the drugs she is taking and it is a very bad sign.  Sadly they donot have a way to know which drugs she is resistant to here in Swaziland.  The next step is that she goes back to DAY ONE and not only starts treatment all over again, but they “throw everything at her” as her Doctor said. They will give her every drug that they have to treat TB here in Swaziland.  It will mean two injections in her hip muscle each day, more pills added to the cocktail and more chance of side effects and the two year count down starts again.  She will have to stay in the hospital because the POSITIVE test also means that she is still infectious.  Our fingers are crossed and prayers being said that her test results are negative and that she can come home soon.

There is no doubt that Nomsa is very scared.  After our meeting with the Doctor she said, “I want to leave the hospital. I just want to go home.”

I can’t blame her. Living in the hospital with people going crazy and dying all around you is like living in hell.  But going home for her is certain death, and she is smart enough to know it.

“I was diagnosed with TB in 2007 and from then until now I have been in and out of hospitals and am still being treated for TB.  But I am happy that I am still alive, I can talk, I can hear, I can see and I can walk – isn’t that great?  And I am the mother of five healthy and beautiful people.  Isn’t that mercy from The One above?  God is great and He does not count our sins, but gives back life to those who are sorry for their sins.  Isaiah 57:15 says, ‘I live in a high and Holy place, but also live with people who are humble and sorry for their sins’.  I think that has been keeping me going since I was a young kid. I knew that God would forgive all my sins if I asked for forgiveness.”

Please join me in praying for Nomsa and all the other “Nomsa’s”who are suffering and feeling hopeless today.

Janine