NiQi - now and what's next

Clinic days arrive all too quickly in my mind, especially for us who go every month, and Wednesday was 'Clinic Day' again.  It's getting colder and the days are shorter which means that it isn't any fun to be up so early when we could be lying in bed an extra hour or so.  It seems that I have only just got into the rhythm of waking at 4.30 and that is only because I do all the prep work for the next morning the night before.  Last month I could still do it because Johan was giving his birds a rest from breeding so he had enough time to do 'my' chores before he went off to work.  Sadly, he has since put down more than 30 pairs of budgies to breed so that in itself is about an hours work that has to be done.  So it was back to waking and getting up at 3 that morning....Wouldn't you know it, even though I went to bed early we were awake for much of the night with a dog barking constantly, somewhere way off in the distance.  They say sound travels at night but that night I wish it hadn't traveled quite so far...

Before we left I managed to do all but feed the horses, chickens and peafowl - but I had their food ready so all Johan had to do was give it to them.  NiQi arrived in the house at about 4.30, all bleary eyed and cold - dressed for a snowfall with boots and all.  Whatever time she woke, I don't know but she did all her 'nebs' and physio beforehand - wise girl that she is because she knows that by doing all that it will help her stats for her lung function!!!!

We were on our way at 5, in the dark and were no sooner off our dirt roads and onto the R101 and there was someone on my tail with 'brights' shining in my rear view mirror....why people drive like that I don't know but the lights on some peoples cars are blinding whether you have them in front of you or behind you.  After a while I managed to pull over enough for him to pass by me which made it easier for me to see and the rest of the journey was fairly good.  At first we thought it might be as long as our first trip along the R101...remember that one...because there was a lot more traffic on the road than last month, however once we passed Centurion we left much of it behind.  There is still one really chaotic intersection near the Builders Warehouse and Dischem Warehouse and to be honest I was just immensely happy to once again make it through there without a ding, a scratch or shattered nerves.  It is a massive intersection, one that you go over half way, stop for the traffic proceeding the other way, before then making your way over the rest of the intersection.  There was a taxi that pushed its way beside me, so I thought okay if he goes I will go because then he will be hit first...lol...once past that though the rest of the trip was fine and can you believe it we arrived just after 7am!!!!  SOOOOOO early, we have never been that early before, but rather that than late.

NiQi was second in the queue although she landed up going in third - but that's another story.  Finally when she went in to see her doctor it was almost 11.  As you can imagine her lung function was down again as is her weight but we knew it probably would be.  She had 10 days of Ciprobay in this last month which alleviated some of the symptoms but hasn't really helped her. So she's going in for IV treatment in just over a weeks time, but not to Charlotte Maxeke this time.  Her exclusion period is over... praise the Lord she has seen this year through,can you believe it?  Her doctor is now sending a referral through to the specialist pulmonologist who she saw in 2012.  Whether NiQi sees him or his partner we will still find out, but we have entered a new phase of her life.  From 2011 to now, who would ever have thought she would still be around to tell the tale?  Who would have thought her lung function could improve from 17% to 30%?  Who would have thought her weight would now be 52 kg?  God certainly did and does know how much longer she has, whether with the lungs she has now or a pair of new lungs.  While she is in for treatment, she will have what is called 'a work-over' by the transplant team which includes amongst others a psychologist.  They will each of them present a report at the next transplant team meeting which will possibly be in the next two months.  Her doctor told us the team meet once a quarter and they have just recently met together, so we will have to wait a bit...but waiting for this is such a short time compared to the time it has taken us to get where we are now.   Her current doctor said that it will be her job to convince the rest of the team that NiQi needs a transplant.  Her improvement over the last 20 months has been good but the damage has been done and there has been a slow spiraling down in the last two months which could continue, or not, who knows.  Not only that though, her bubbly, happy, ever fun loving personality gives a false impression to those who don't know her or rarely see her as to how she really is. Her doctor has written to her medical aid requesting and motivating for an upgrade of her nebulizer as well as including on her script a drug called Pulmozyme (Dnase)...you can Google it...Mark had Pulmozyme, he was one of the patients given it to use when it was still in it's trial stages and it worked well for him.  Sadly it came at a stage of his life where any real good it may do, was not enough, his lungs were already so badly damaged...NiQi's doctor has warned her that it doesn't help everyone, but we're going to give it a bash.  Why hasn't she had it before now?  It is such an expensive product that State hospitals do not feel they can warrant putting it onto their list of medications because so few would benefit from using it.  Even medical aids want motivations from doctors before they will consider approving the use of it.  So this is where we are now, 'Onward and Upward' as she has stated herself....