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

Relocation update

hi everyone

I am sorry for being so quiet, but as you know, our family was relocating back to KZN.

As of last night, 9:30 pm, I was officially back in my home town, safe and sound.

My mom and dad arrived this morning, along with the moving truck. I am yet to go to my house as I am staying with my aunt at the moment, but we are going to Willow Lane later today. nI am very excited.

It is strange to be back,I can't quite tell if I am excited or not, I just don't think that the reality of it all has hit me yet. I feel like I have a little gift wrapped inside of me, that is just bursting at the seams. I think that is my excitement.

 

 

As for my heatlh, I woke up with no coughing Fit or any headache, of which I have had continually for the past months in Pretoria.

Colimycine

With all this hype about the Orkambi that is apparently a "Cure"for delta F508 mutations, it got me thinking about Colistin.

This is a section 21 medication that I am on, it is my "LAST RESORT".

This medication was made in France and is yet to be approved in South Africa, 10 years after the clinical trials started.

What A Patient has to go through to get this drug is nightmarish. It is more of a headache than someone hitting you over the head with a frying Pan. And yet, what do we "last resort"patients do without it? What options do we have when we are resistant to every other drug available?