20%

Yesterday Johan drove NiQi up to Jo'burg for a clinic visit at Charlotte Maxeke and then on to Milpark for admission.

We have been planning this trip with great care for some time, as NiQi has not been well for many months now. When she arrived home after her last admission near the end of March, she said she felt like it was all a waste of time. My thought is that her resistance to antibiotics seems to be taking it's toll on her system and de-sensitizing her body before treatment each time only helps in so far as allowing her body to accept the combination of antibiotics given to her.

This last three months we have held on to the bitter end although I kept saying to her that if she wanted or needed to go earlier we would take her in a flash. In the middle of it all she caught a cold and had complete bedrest for more than a week. Thank goodness she had no fevers otherwise we would have definitely called her doctor and driven her up.

The beginning of May she organized 3 days away with her cousin and their respective fiancées which she loved to bits. It was definitely good for her to get away but the journey was taxing on her body and it took her another week to recover.

The oxygen machine has been running day and night and we have fitted it with the long tube so she can walk from her room to the lounge and the bathroom.

Most days she has lay in bed watching series or movies on her laptop, inbetween posting on Facebook for our baking and catching up on our admin.

The days that her fiancée had time off work she insisted on spending the time with him but at the end of it she would collapse into bed and try to sleep till late the next day, which she did unless woken by a call.

It has been very taxing on her health though and I have watched her appetite decrease as she kept insisting she couldn't eat any more otherwise she would vomit. I had to nag her to do her night feeds, though so often she couldn't do them as we have battled with power failures in our area.

Ever the superhero, she has never let on to those around us how much she is battling. I watched as she stood in the supermarket chatting to a neighbour as if everything is fine but then walk ever so slowly to the car afterwards because she used so much of her energy talking. She would sit at the market with me and chat to customers, always happy, always with a smile on her face, but as soon as they have moved on, she collapsed back on the chair sucking on her asthma pump and breathing controlled breaths to gain her strength back. She is a wonderful actress, she deserves an oscar every day for her performances.

So yesterday when she had her lung function test, it was no surprize to me that it was down. What was a shock though, was that it was down so much..... far more than I imagined.... far more than I expected. Sitting at 20%, a drop of 10% from her previous test, she is now not far off the 17% she was in 2012. We have a lot of work ahead of us if she wants to stay on the transplant list but we've done it before and we can do it again.