Tuesday, September 16, 2014

Chapter 16: Nomsa's impact on a 12-year old MDR-TB patient

I have been trying to figure out how to write an update on Nomsa and what happened in the TB hospital last week without the blog being totally overwhelming to me or to you the reader.  It has taken me a week to think it through and if you are reading this then I have had the courage to finish it.  If you don’t know who Nomsa is please go to wednesdayswithnomsa.blogspot.com to find out.

Two weeks ago we hired Nomsa to start making rag rugs because she could do them at her home in isolation (not infecting others), and then would have purpose in life and money to buy food etc.  It seemed like a great plan and Anthony kindly went to her house to teach her how to make the rugs.  One short week later there were no rugs because her hands were hurting and she was having trouble using them properly to tie the cloth on the rugs. Last Saturday she decided to go to church to have people pray for her hands.  (Note: she would be using public transport and be in a public place with XDR-TB – Extremely Drug Resistant TB!).  By the time she got to church she was shaking and having seizures so someone took her to the TB hospital where she still remains.

When she arrived at the hospital she called me and asked me to come visit her. I went the next day with Jimmy and a few men who were on a volunteer trip with Heart for Africa.  The nurse said that Nomsa was in Isolation Room #1 and we were not to go in because she is highly infectious. We all had excellent masks on so went in briefly to let her know we were there and to pray with her.  We did not stay long and did not remove our masks or get to close to Nomsa or the other patient.  She was shaking badly and obviously very sick.

We left her and went to visit a few others in the ward.  Much to my shock and dismay the 12-year old girl who was discharged from the hospital back in July was back in her bed.  This is a long complicated story, but here is the gist.  Her father is dead. Her mother got very sick (HIV/AIDS and MDR-TB – Multiple Drug Resistant TB) and the young girl nursed her mother in their tiny one room house until the mother died last November, at home with the young girl.  Then the girl herself contracted MDR-TB from looking after her mom (the girl is also HIV positive from birth we believe) and was put in the TB Hospital where she spent eight months on treatment.  When it was time for her to be discharged she called ME to come pick her up!  Why? Because her family was dead and mine was the only phone number she had.  UGH.  I could not take her as I have nowhere for her to live, but the nurses contacted her church and made arrangements for her to go live with a family in Mbabane.

Fast track a few weeks and she was back at the hospital. Apparently she was pushed by one of the girls at the home where she was staying and she pushed back (who knows what happened?), but the parents who were caring for her said they would not tolerate that behavior and drove her back to the hospital gate and dropped her off.  Two weeks later she was taken back to the family in Mbabane and then it happened again and they dropped her again at the front gate of the hospital.

The girl was in a catatonic state when I saw her on Sunday. She is not speaking, not recognizing people and clearly has had a psychotic breakdown.  I have spoken with senior people at the hospital to see how we can help and they told me that she is on anti-depressants and drugs for psychosis (which is often caused by the MDR-TB drugs).  I am sure the trauma of losing her mother as well as the trauma of living in the hospital and then the trauma of leaving and then getting dropped back was just too much.

We have contacted people in authority here in Swaziland who we believe can help.  There are meetings happening and we pray that it is not too late.  This young girl, not even yet a teenager, can become re-infected just by being in the women’s ward at the hospital. We pray that doesn’t happen.

The next person we saw was Baby Abigail’s mother who was back in the hospital after having been discharged.  She is totally deaf, but was happy to see us all when we stopped at her bed. She was not able to manage the injections and many drugs at her home and is now back at the hospital getting treatment. I was able to write on a paper and tell her that her baby is doing well.  It is all we could do.

Now, back to Nomsa. I am told that the shaking and seizures were from a bad internal infection.  She seems to be doing a bit better now, but her hearing is almost totally gone (impossible to have a phone conversation and I am not allowed to go visit her in the isolation room).  She is calling me many times a day and is confused.  From asking me if I have DSTV on my phone to telling me she wants to go home, but she can’t walk.    I don’t know if this is the beginning of the end or just another turn in the road.  I am trying to reach health care people at the hospital to get information, but have not yet succeeded.  At this point we just continue to pray for a miracle.  I do believe in those.


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