Tuesday, September 16, 2014

Chapter 18: Nomsa moved to Project Canaan - I am not sure if I can do this.

Chloe and I taking Nomsa out of the hospital to the truck.
For those of you who don’t know who Nomsa is you can catch up by reading wednesdayswithnomsa.blogspot.com

Her real name is Gcebile Mabuza, but when I first started blogging about her I called her Nomsa for two reasons; it provided privacy for me to tell her story and it was an easy name for people who were reading the blog.  “Gcebile” has a front tooth cluck to it and can be tricky for the untrained tongue.

On November 19th, 2012 (my birth day), Nomsa gave birth to her fourth and fifth children at the age of 23 years.  Her girls Rachel and Leah were her second set of twins and in early December she was dying on the floor of her mud hut from MDR-TB (Multiple Drug Resistant Tuberculosis).   She was taken to the TB hospital and I was called and asked if I could take the twins.  The answer was “yes”.  And that is how Nomsa and I met.

In January 2013 I started visiting her once a week to take her food, reading materials and to try to help her get healthy and well so that one day she could care for her own babies and they would not become orphans.  For a year she seemed to get better, gaining weight, taking her medicines and injections daily and helping so many other dying women who needed help in the ward.

In the fall of 2013 she took a turn for the worst.  She had left the hospital to take her medication at home, but got very sick and ended up back at the TB hospital.    One day when Chloe and I were at the hospital visiting we heard the news that we never wanted to hear (but always suspected).  Nomsa had become Extremely Drug Resistant to her Tuberculosis medication (XDR-TB).  This life-altering moment not only changed her life, but it changed ours.  This moment was captured live by film makers Jezz Newman and Beckie Stewart in their incredible film called “TB: Silent Killer - Return of the plague”, which is a PBS/BBC documentary about MDR-TB.  If you have not seen the film, I encourage you to google it or go to www.pbs.com and watch it today. 

Since that day Nomsa’s health has been in decline.  She was moved in to isolation and has watched roommate after roommate succumb to this horrific “plague”, dying in front of her eyes.  Her weight has dropped from 120 lbs to 83 lbs.  She is skin and bones, can’t walk on her own, is in terrible pain and is not always lucid.

In 2013 we built a house for her (a single room) at the kibbutz on Project Canaan with hope that she would one day be “culture negative” (non-infectious) and could move.  That day of “un-infectiousness” does not appear to be on the horizon. In fact, we are told unofficially that only one person in Swaziland has recovered from XDR-TB.  We are still praying for a miracle.

Last week I succumbed, not to the disease, but to her cries to go home.  She had given up hope in the hospital and was failing quickly. The Doctor shared with me that they almost lost her a couple of weeks ago while I was away, but she rallied one more time and stabilized, with more medication.

Last week I could no longer bear her phone calls, begging and tears.  I sought council from friends and experts as to the risks of bringing her here and surprisingly got full support from everyone, including the other women at the Kibbutz and the Aunties at the Children’s Campus.  Everyone said that I MUST go and get her and they would all help care for her.  The Kibbutz ladies would help care for her and her room. The Aunties would send down food three times a day.  People from abroad have offered to pay for her food, get her a cell phone with a radio and come and visit her when they can.  The outpouring has been overwhelming to me.

Nomsa seeing her twins on the way to her house. She couldn't touch them, but saw them.
 She has been here for five days and I now realize this may be the hardest thing I ever do.  Here are a few personal confessions from me.  I am not good with sick people.  I am not good with hospice. I would be a better emergency room worker, but not a long-term care person.  I hate to see people in pain. I avoid watching people suffer.  Nomsa is sick, she is in hospice under my care, she has been in long-term care (hospital for two years), she is in pain and she is suffering.

Janice Johnson with Nomsa in her new bed.
 I have gone to see her each day to count out and put in the correct containers her 36 pills, for her XDR-TB, her HIV/AIDS and her potassium and magnesium deficiency (which has lead to kidney failure).  I (and everyone visiting her) must wear a N95 mask and replace it every week to keep me/us safe when I/we see her.  

The women at the Kibbutz have gone every day to wash her, clean her room, bring her water and try to encourage her. They are simply amazing.

I believe that Nomsa is suffering from depression and some dementia, which is causing unusual conversations and demands (i.e. she only likes white bread, doesn’t like boiled chicken, pizza isn’t real food, and she wants a full time nurse to come and sit with her).  We are all working together to sort this out and help get each of us through this for the weeks or months to come.  Three days a week a government nurse is driven out to the farm to give Nomsa an injection in her hip.  They are committed to doing this every week, but have said that sometimes there is no gas for the vehicle and they don’t always travel when it’s raining. Sigh. We will make a back up plan, because we can, but what about all the other people who will miss out on their injections? 

I will admit, I am really struggling with this.  I feel a huge burden of responsibility and want her to get better, and I do believe in miracles.  But I have to remember that if she is not healed in this life, that we brought her here so that she can die with dignity, surrounded by people who love her.  I need to try to smile when I visit her (though the mask) and not feel sick when I count out her pills.  I need to remember to show her that I love her and not that I am terrified of her death.

Thank you for reading this blog and for your prayers for everyone here.  Please pray for protection for all and grace, joy and HIS peace that passes all understanding.


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