Thursday, 21 June 2018

Cf week 2018 21st June

So after my last blog although short and sweet (ish) I have had a lot of feedback from people agreeing with me on the subject of “keeping it real” as such. 

Following on from the inspiring Natalie who took over Instagram the other day to show the incredible healthy way she is living and doing along side all her day to day treatment and struggles. We had a dear friend Kayleigh story today. 

As I said In My blog the other day I wanted them  to show the rough side to cf and they certainly did today! And quite frankly it’s the harsh reality that I find or shall I say thought the cf trust we’re Hiding from, yet today I was proven wrong! 

So Kayleigh was a friend, not close I didn’t know her well however she had received her transplant just two months before me at Harefield and we spoke online a few times and became friends on Facebook. 

Sadly her first transplant didn’t work out best, it’s not my place to say the reasons but it just didn’t go smoothly and she was relisted for a second transplant! She waited a long long time and unfortunately it was too late and a couple of months ago she sadly passed away because the call just didn’t come in time to save her. 

In the video it shows her struggling to breathe, on oxygen, wheelchair/bed bound, still smiling but looking frail, and swollen from the high dose of meds to keep her alive. 

This is the harsh brutal truth of CF and transplant and this and many others know all to well, the struggle, the suffering, and the not knowing! 

This is what the public need to see, as much as the future is bright for young babies with cf now, we cannot forget all the people we have lost under the age of 20-30 to this and how we never hear it, we just hear how cfs are living longer bla bla bla. 

I’m almost 28! An age I never thought I would be lucky enough to see and I almost didn’t see 26! But that’s only because I was lucky enough to get a transplant! 

But then transplants aren’t a cure, it’s like a ticking time bomb, rejection, viruses, colds low immune system anything can hit us and our immune system not be strong enough to cope and that’s it all over ! 

Don’t get me wrong I’m living for each day and count my blessings for each one, but for every blood test I have, or X-ray or scan I’m worried that word will come up and my time will be up! 

I was estimated to have an extra 18 months with these lungs I was told when signing all the transplant paperwork, and hear I am almost 3 years on! 

So I think it’s time to raise more awareness of the ones we have lost and left behind, the ones who didn’t get a future and the ones who are still in there early 20s facing death and waiting for a transplant now! Or the ones who have a family and kids and now going through it wondering if they are going to be around to see their kids grow up!?  It’s these people who are the real faces of cf, not the pretty side but what the killer disease  does to us! 

Anyway enough of my jibber jabber off to bed early start for royal ascot tomorrow with my girlies! 
Cheeky drink before bed! Night all x 

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