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 

Cf week 2018 wear yellow day

So this year Friday the 22nd will be “wear yellow day” for raising awareness for the CF Trust. Do a yelfie! I will actually be at ascot all day but I have my yellow top ready for my morning pre ascot getting ready and to wear for awareness, I mean if I had planned it better I could have worn a yellow dress to ascot but just wasn’t organised enough! 

I have been so interested In the Instagram for the trust they had a take over today which I found inspiring however without being negative I think it is a bit difficult for people who aren’t as healthy as her, I Remember pre transplant how much it got me down to see other cfs withour transplant have the luxury of working and being happy to be so fit and healthy when there is no matter what I did I could never be like that! I find sometimes with the trust they are so scared to show the parents the reality of cf and how bad it gets, awareness for cf is crucial and people need to see how hard it gets and can be for so many. 

Get someone with 20% lung function waiting for a transplant, someone who would love to exercise without oxygen and jump on the gym bandwagon but that’s just not the case! 

Cf can be so missunserstood anyway I think it needs to be real! 

Just my opinion maybe they will have someone who’s in a wheelchair on a bipap machine waiting for lungs unable to eat they feel so sick and going blue when they talk, or maybe they will continue to show cf as a popular lovely illness which is not as bad so it protects the parents of young kids! 

Fantasy land in my opinion x

CF Week 2018- Me and Cf

So CF week (Cystic Fibrosis) started today (Monday 18th June) and I feel the need to talk about it on my blog as this after all is part of my life and what my blog started off about! 

So cf in a nutshell... 

Cystic fibrosis (CF) is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.

Yeah I did copy and paste that ha ha 

So how had this been for me! Well I think it’s safe to say I have covered it in my blog over the past 6 years! 

However if you are new to my blog or new to this cf stuff then let me try make this brief! 

I was diagnosed at the age of 18 months, not because I only just started getting  stymptons then, nope! Unfortunately back in 1990/1991 cf wasn’t on the radar and drs never tested at birth like they do these days! 

Nope I spent  months and months in and out of a&e and children’s wards being admitted for asthma, chest infections and an over protective mother! 

So thanks to a lovely nurse in a&e one day she asked my mum if there was any cf in the family, Mum had never heard of it, so off she went to library (yes no internet or google then) and read a book, she came back to the hospital licked the back of my hand which was mega salty and that’s it she knew I had cf. 

So after they done all the tests it came back positive for it and my mum was releaved, I could now get the right treatment to treat me! 

I did and I started to improve slowly! 

But for me cf hasn’t been a walk in the park, I’ve spent my whole life in and out of hospital every few months with repeated Chest infections! I mean getting to my age is a massive achievement! 

I was treated as normal as possible and it didn’t stop me having sleep overs or going to parties I wanted to be like every other child my age just with extra treatment to do, and hospitals stays were hard when I was young as my best friend one minute would have a new best friend by the time I had a two week admission in Hospital and came back to school. But that’s life and it made me while I am today, positive strong and outgoing person! 

Skip to my 20s that’s when the shit hit the fan shall we say! 

My lung collapsed two weeks before my 21sr birthday so that was my 21st partying hard in Hospital in london! My friends were great and all came up to Chelsea to celebrate with me! 

Then that’s when I was told I needed to go on the transplant list as I was left with little lung function and on constant oxygen and wheelchair bound! 

So was listed in the Nov 2011 waited for 8 months then Kalydeco came along and changed my life! 

And within 3 weeks I took myself off the list. 

Got married had a few holidays still needing oxygen but using my wheelchair a lot less! 

Then September 2014 came and the lungs just couldn’t cope anymore, they were giving up and so back on the list I went. 

Then loads of crap happened with my veins and some clots and a stent falling into my heart after being inserted into my vena cava vein. So then I became an emergency for Transplant and was stuck in Harefield with weeks to live. 

4 calls later and 11 months listed and I got my magical lungs August 2015 

Now life is different! And there is no cf in my lungs as they are not mine! Which is amazing! 

But transplants aren’t a cure and you swap one set of problems for a whole new set! But I won’t bore you with that tonight! 

Let’s just say i am Incredibly grateful to my donor Gill and her amazing family for agreeing to donate her organs and her lungs to me! She saved 5 people and I was the youngest! Just when I thought there was no more fight left she became my angel! 

So I’m dedicated this to Gill, my absolute angel who choose to leave a selfless legacy to me and the other recipients! 

Herbalife starts

So I’m buzzing for this! 

Yes I have jumped on the bandwagon but it’s working so fuck all of you judgemental people! 

Yes I’ve started using Herbalife to loose weight and feel better! And I feel very positive after my first 5 days! I’ve lost almost 1kg and I’ve had take away curry’s with all the nann bread and rice included with extra sauce. So almost 1kg is good and I’m happy with that! 

I’m so on it now though I need that thin sexy body back but with a few curves now to go with it! I’m trying to go to the gym more but feeling quite weak but still going! Trying to run but leg on one side fills with pressure not sure what that’s about but not giving up! 

So this Herbalife  is not only helping my weight but also my tummy issues to which have been a mess really since my transplant! But since having this no bloating and no bad tummy’s (unless I have a cheat day then I pay for it) 

So for this in the first week I’m so happy about it all, I just feel so good! 

Going to keep a record of it all and progress! Things needed to change and now is the time to kick my arse into gear! 

So I have a shake in the morning which is 300mls of cold water, 4 ice cubes then two scoops of vanilla protein drink mix on first, then 2 scoops of tropical flavour formula 1 meal replacement. 

Blend all together in my ninja, and then pour into a glass then that’s breakfast done. 

I do the same for lunch. Depending if I’m in or out or I can take it with me. 

And then dinner il have chicken and broccoli sometimes with cous cous, rice or a few mini potatoes. 

Then I drink the aloe Vera drink throughout the day with lots of water to keep me hydrated as that’s my only fluids I have now as no fizzy drinks or juices. 

I also have a herbal tea But not a tea person but you can have it cold not tried it like that yet! 

And today I have brought oat apple fibre powder to mix either into my shakes or on its own with water to help cut out the fat I might eat. 

It’s all so exciting and love it! And I can’t wait to see how I look and feel in a few months time if I’m this happy after 5 days! 

Job hunting has been less successful! Got knocked down by not getting the last job at the gp but onwards and upwards and more applying tonight! 

That’s all update with more in a week or so! Wish me good luck oh and ascot next week whoop x

Job hunting and failing!

So I’ve been on the hunt for a “proper job” as in workin more than one day a week! 

It’s bloody hard! I’ve had a few interviews now and always been told I’m “liked” but don’t make the cut! It’s literally so hard to stay bloody positive when your not getting anywhere with it! 

I have another interview tomorrow so again fingers crossed, I’ve got not experience, no qualifications no wonder no1 wants me! 

I mean I have a personality- I think! But that only gets you so far aye! 

I’m not signing on for job seekers or anything like that I’m just rolling with it! And going with the flow! 

This is the problem with having cf well it has been for me. I’ve grown up not bothered about education because I just wanted to make the most of life and can honestly say I didn’t think I’d be here at this age. 

Then you fight to get a transplant so sick basically preparing to die and the worse, then you get a transplant and things are better but then your like fuck! I didn’t plan this far ahead what do I do with my life now!? 

I love social media, I love my blog (even though I neglect these days) But that whole online selling stuff is not for me! 

Just need to find myself and what I wanna do and what I was put on this planet to do! What is my purpose!? 

Ohhh deep talk! I won’t scare you too much! 

On another note... STILL no news from chador croaa or st Marys about my op date! And quite frankly I don’t want it now till after my birthday as I wanna be a fatty and eat lots on holiday and my birthday meal out! 

So yeah that’s all that’s going on in my life at the mo. 

Anyone reading this wanna give me a job I’d much appreciate it! 

Thanks love to ya all 

Sprog