Tuesday, September 16, 2014
Chapter 17: Nomsa got more news
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.