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?

Saturday spoils

So it is now day 3 in hospital, it is the weekend, so it is rather quite and lonely, not that I mind.

I knew that Kyle was coming through to visit me, so I was ecstatic, as I haven't seen him in a while.

We had a lovely day together, we had some coffee, good conversation and then relaxed whilst watching Black Adder.

           

To my surprise, just after I had physio, I heard voices outside my room, not expecting anybody I know, but who was it?

All the exciting news

Hello everybody,

I feel terrible for neglecting you all, and not keeping you up to date with the going ons in my life.

Things have been a little big hectic lately, between work, Club responsibilities, packing and keeping myself healthy.

As you all may know, our family is relocating to Hilton. We were supposed to be all packed and moved out at the end of the month. The 30th was to be our last day living in Pretoria.

However that has not materialised, until today.

The Results are out...

As you may recall, I posted on my fb Group https://www.facebook.com/groups/392256720827792/, that Kyle was being tested to see if he is a carrier of Cystis Fibrosis. 

We received the results today. We are both relieved and thankful to the Lord for this Blessing.

Here is the letter I received.

Dear NiQi

My apologies for e-mailing these results & not waiting for our consultation but as the results are good news & I know that you & Kyle are both anxious about the results, I thought that I’d give them to you before our next appointment.

Kyle DOES NOT have any of the 30 common South African CF causing mutations. This reduces his risk of being a carrier of a CF gene to 1 in 200 (compared to the general SA Caucasian population of 1 in 20). This then reduces your risk as a couple of having a baby with CF to 1 in 400. If you were ever to have you own biological child, that child would always be a carrier for CF (i.e. have one gene from you)

The only way that your baby could have CF is if Kyle carries one of the rarer CF mutations less common to the South African Caucasian population.

We’ll discuss this further at your next appointment. Please make a list of any questions that you have.

Regards

Fabulous and Fighting needs your help

The Fabulous and Fighting CF Trust Fund started off with a BANG in 2012...

Things were going very well, the fund grew, and grew some more. People were very generous opening their hearts (and Wallets- Hehe).. and I cannot say thank you enough to everybody who has donated since the funds inception.

A massive thank you must also go to everybody who has had fund raisers for me, no matter how big or small, they have helped more than you know.