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.