News Letter 1 / 2016

     

                

The Fabulous & Fighting CF                  Trust        

Registration No IT 1010/2012/PMB

Supporter of SACFA

         DUM SPIRO SPERO – While I Breathe, I Hope

                                                                                      

           Newsletter No. 1/2016                    

Dear Family and Friends,

I hope you all had a lovely peaceful and restful Christmas period and managed to safely see in the New Year.  I am not a philosophical person by nature and do not make New Year resolutions, which I know I would not keep, but I am believing in a year that will bring me strength to see me through the difficult times and faith to know that God is in control of my life.  That being said, I will embrace to the best of my ability all that comes my way with as much positiveness as I am able. 

Since I last wrote I have managed to keep the summer bugs away and hopefully the worst time of year for me is now over and done with. The cortisone seems to have helped with my asthma and kept it under control with limited whistling and wheezing.  I confess I haven’t been very active of late as the energy levels have sapped a bit with the hot summer days and the best exercise I get is walking down and up our steps.  The rainy, cooler days in between are a wonderful boost to me and the reason I think that I have managed so well so far.  I will not lie, my happy bubbly spirit is tired at times and I have taken to resting more often.  As ever I push myself to go for as long as I can without resorting to using my oxygen during the day but I continue to use it while I am sleeping.

The never ending story of medical aid and gap cover continues which does little to alleviate the stress I feel at trying to sort it all out.  Just when I think all is well I receive another email with yet another tail with a twist.  I guess it is one of the things that I have to deal with and together with my mom we are slowly working away at it all.

I went to clinic almost two weeks ago and my doctor was happy with my progress.  She said that it looks like the move has been good for me as my lung function increased to 30% again, wheezing and all.  My weight is still a bit low for transplant but my appetite is still good and I am eating well balanced regular meals.

I am being admitted for treatment again on 2^nd March and will probably stay the full two weeks as between medical aid and gap cover neither seem keen to pay for my TTO’s (medicines I am sent home with to continue my treatment until 14 days is completed.)  It will be a lonely time for me as my mom and dad will not be able to stay away from home for so long…dad must go to work otherwise it piles up and takes him a while to catch up. 

My mom and I have started baking and have a table with cupcakes at the Farmers market early on Saturday mornings.  We are only allowed to make and sell them as there are already two other ladies baking cakes and tarts etc.  My task is the admin and PRO work and mom bakes and ices.  Any other orders are welcome and we are not limited in doing anything else.  

We are trusting that we will soon be making enough to cover my expenses of medical aid and clinic etc which will take the burden away from fund raising in our weakened economy and we will hopefully be able to build the trust fund up again ready for transplant.

Well I think this is all my news for now and as I leave you I remind you of my motto – ‘Dum Spiro Spero’ While I breathe I hope. 

This is after all what my life is all about….one breath at a time.  Thank you for reading this.  Thank you for supporting me. 

Thank you for understanding how much I need you.

God bless you always

<3 <3 NiQi <3 <3

The Fabulous and Fighting CF Trust banking details are as follows:
   Bank :                                  First National Bank             
  Account Name :                  The Fabulous and Fighting CF Trust
  Account Number :              (ZA) 62371509062
  Branch :                               Midlands Mall
  Branch code :                     250655
  Account Type :                   Current
  Swift Code                           Firnzajj

Low weight = Low BMI = NO TRANSPLANT!

On the 11 November 2015 I will have been on the transplant list for a year. A whole year has gone by, and to think that when the transplant panel first discussed my case, they thought that it was too early for me to be listed, because I still have a good quality of life. It just goes to show you how things can change.

It is now that time of year, where the panel have a sit down , and reassess me, and decide to transplant or not. 

When I was first listed, my Lung function was sitting at about 34% and my weight was sitting at around about 59 kgs. 

My 25th

As you may all know, I have recently turned 25 years old, a quarter of a century.

Now, I would like to think that is a milestone, especially having CF, and being told that at birth your prognosis was 21 years.

I have the most amazing family ad friends anyone could ever ask for. Let me tell you why.

I went up to Pretoria on the 16th Of this Month for Clinic.

Clinic went well, my lung function is still sitting at 27, my weight is at 55.7kgs. Dr Baird is happy where I am, but next month, we think that admission will be in order.

Both my mom and my dad came with and they stayed with my cousin Bernadette and Her fiance Brett, whilst I stayed with Kyle and his family.

That time of Year

Good day everybody

It is that time of year, where I ask you all for your inputs on Fund-raising ideas.

Medical costs this past year have been high, and my fund isn't looking so great...

So, I am asking,

does anyone have, or would like to run with any fantastic fund raisers?

Lots of Love always