Did you happen to see the PBS Special this past week on
Frontline TV called “TB The Silent Killer”? It is a documentary film about Drug Resistant
Tuberculosis and it was filmed here in Swaziland (with Nomsa - real name
Gcebile – being one of the patients featured).
The day after the program aired I received an email from our
friends Jere and Janet Scott, which read, “Tonight as we watched TV, we watched a
program called Frontline on "TB the silent killer". To our
surprise it was about Swaziland. As we watched we saw many familiar
places in Swaziland and were introduced to a number of individuals suffering
form TB, DRTV and finally XDRTV patients. What jumped out was one person,
who they called Gcebile in the film, it was however NOMSA, in the film were
scenes of her in the hospital, and on the wall behind her were photos of her
twins, and guess who else, you and Ian. I had already recognized her from
the pictures of her without a mask. What a heart rending scene to see
when the doctor and nurse came in to tell her that she, Nomsa, had XDRTV and to
see her face and the suffering this dear woman is going through.”
That
email made me smile and I was excited to know that people were watching!!
Throughout 2013 my goal was to visit Nomsa each week at the
TB hospital. I would bring her
healthy food for her to eat, treats for her to enjoy, books for her to read and
letters of encouragement from people around the world. She started to get up more, go outside,
plump up (maybe a high of 120 lbs) and she was active around the hospital. She had hope. Because of her heart and actions, we have baby Rahab (mother
has since passed away) and baby Abigail (mother had emergency C-Section at
private hospital) and of course we have Nomsa’s daughters, Leah and
Rachel.
In the middle of last year she decided to go home and
continue on her treatment from her local clinic. We discouraged this, but she
felt great and wanted her freedom.
A few short weeks later she got very sick and ended up back at the TB
Hospital. Her treatment continued, but she went down hill. Coincidently, Chloe and I were at the
hospital the day that the Doctor told Nomsa that she no longer was being
treated for MDR-TB (Multi-drug Resistant Tuberculosis) because she had become
Extremely Drug Resistant (XDR-TB)
and that she would be moved in to Isolation Room #1 (highest level of
isolation). The amazing film team
was there that same day and captured the devastating news on their camera while
Chloe and I stood out of line of camera site and wept. Later that same day we rushed Abigail’s
mother to the hospital and witnessed the C-Section that brought Abigail in to
the world (and the tube-tying that assured there would not be a seventh child
born to this woman). That was a
tough day!
One of the challenges with Drug Resistant TB here is that
there is no laboratory in Swaziland that can test WHICH drugs the patient is
resistant to. So they continue
taking ALL of the drugs, some/many of which have terrible side effects such as
deafness, psychosis etc. Our
friend from the film production connected us with another organization that was
able to send Nomsa’s sputum sample to the Netherlands for testing. It took 4+
long, agonizing months, but I received a call this week that the tests were
back. I headed to the
hospital with Lori Marschall on Thursday and met with the Doctor to get the
final results. The Doctor met with
Nomsa first and then met with us.
Nomsa weighs only 88lbs (I weighed her myself on Monday of
this week). She is very weak, has
trouble speaking without becoming breathless, has no appetite and doesn’t get
up anymore. Walking 30 steps is
too much for her, and worse is that she is giving up the fight. There are days that she tells me she
doesn’t want to live.
Well, God is not finished with her yet. When we met with the Doctor he told us
that her diagnosis is still MDR-TB, with signs of XDR-TB. That might not seem like a big deal to
you, but it is a big deal to her (and me) because it gives us hope. She is NOT
resistant to either of the injections available to her. She had been taken off her daily
injection recently because of renal failure. Assuming she was resistant to it anyway and with her illness
they took the risk and removed it. Now they can work on the renal issue and get her back on
those injections. They may be the very thing that saves her young life. She is also not resistant to another
drug that is important, but it does make her vomit violently so we are not sure
about that one.
I met Nomsa in early December 2012. She was rail thin, was sitting in
the back of an ambulance holding her twin newborn babies before handing them
off to me and taken to the TB hospital.
I will never forget that day.
I am still hopeful that she will be healed, leave the TB hospital on her
own two feet and come and live in the house that we have built for her. It is ready and so are we.
Live from Swaziland … we are hopeful.
Janine
PS - we are expecting another newborn
today.
He/she will be born in the
next hour or two.
We give thanks.