Busy week, and recovering!

Hi guys!

It's been over 3 weeks since I had my new Portacath fitted now, and it's doing great! The first week and a bit were hard, I couldn't move my arm so I couldn't dress my self, I couldn't lie down flat but I couldn't sit up straight, and my left arm had to be on a pillow so it wasn't 'squashing' my gripper needle. It was very annoying as I couldn't do any normal things, because I was in a lot of pain.

Anyway few weeks gone and it's feeling SO much better, my surgeon said I probably shouldn't start training properly for around 6 weeks, but I've pushed myself and made sure I'm back in 2-3 weeks! It feels great to be training again, and I'm even putting in the work and going for runs, and doing extra conditioning to build up my fitness levels again. I hate sitting still, so I knew I had to get back into things asap, however I do have to wear quite a bit of padding and tape under my arm whilst training and most probably competing for a little while just to make sure things are okay with it and cheerleading is a very strenuous and contact sport.

This week I have another E.N.T appointment and my yearly Ultrasound on my Liver and my spleen etc. 

My E.N.T is for my sinuses as I'm still getting a lot of headaches and some nose bleeds again, even though I've had 3 operations to try and fix it, but it obviously hasn't done the trick yet. However my last operation I had my surgeon had found a lot of polyps all in my sinuses but they didn't have time and the my parents consent for that operation so they couldn't do it as it would have been more invasive. I'm hoping that that is still the case, and nothing to major so they can just try and get the polyps removed if need be!

I will update on how my appointments  have gone later in the week. 

Thankyou all for reading, 

Speak soon!

Emily xo

Fighting for 8 years💜

Wow, so I can't believe that yesterday marked 8 years since I was diagnosed with Cystic Fibrosis.

It has been a long and very bumpy road, but I'm here and I'm still fighting strong! 

 'Forever Blessed With Every Breath' this is so so true, ever since my diagnosis I have NEVER took one breath for granted. I am eternally grateful for each and every single breath I take, and I will be forever.

I have beaten CF so far, and I will continue to do so no matter how many obstacles get in my way. I will do it all with a huge smile on my face.

I just want to say a huge Thankyou to everyone who has supported me through the past 8 years, it hasn't been easy, but with everyone's support it makes it a lot easier to deal with. I love you all!

Thankyou for reading my blog, 

Speak soon.

Emily xo

New portacath!!

Hi everyone!

It's been 1 week (and one day) since I had my second portacath placed, and I'm feeling good. I'm still in quite a bit of pain, and still taking pain relief, but I'm hoping when I get my needle removed tomorrow I will be able to move my arm slightly better. The operation itself went really well, I was in theatre for a little longer expected though, they originally said about One and a half hours but it ended up being 3 hours In Theatre and then a little more time in recovery. I was in a lot of pain when I woke up but the nurses were great and I had every single pain relief I could have had! (Morphine, general and local anaesthetic, paracetamol, ibuprofen and another one that I can't remember!) 

We just have to keep everything crossed that my second port will last just s long as my first one, which was around 7 years! I'm so grateful for my port, and I know for a fact I would struggle having my treatments without one due to me being really scared of needles. It is quite literally a life saver in my eyes!

This is the position of my new port! It's pretty much in the same place as last time which I'm happy about!

I'm never too old for a bravery certificate! Haha..

So as I said before I am getting my gripper needle removed tomorrow as it's the end of my 2 week course of IV antibiotics. I just can't wait to be able to get back to training properly.. (I hate sitting still and watching my team carry on without me!) 

Anyway, Thankyou for reading, and all of your continued support. :)

Speak soon, 

Emily xo

IVs, New port!

Hey guys! This will be a short update.

May is Cystic Fibrosis awareness month, so I've been trying to upload photos etc in social media to help raise a bit more awareness, CF definitely needs to be more well known, not only in the UK but world wide! Many people think it's 'Rare' well it's not, around 9,000 people in the UK alone have Cystic fibrosis, that's 1 in every 2,500 babies born!

Anyway, I'm doing okay at the moment, I started my IVs on May 1st for two weeks. I'm just a little tired but I'll be fine in a few days! My consultant ordered a ECG (echocardiogram) for me to make sure my heart is okay for some new tablets for my reflux, so I had that done today, and everything is great!

Tomorrow (6th May) I will be going into Manchester Children's Hospital to have a new port fitted. This will be done under general anaesthetic. I actually can't wait to have my new port, no more sore IVs, and the IVs themselves will be much easier to push through and we won't have to force them! Yay!

That's all for now, but I will update how my op went in a few days, Thankyou for supporting me!

Speak soon, Emily xo

Happy Easter everyone, and exciting news!!

First of all I want to start off by saying Happy Easter to all of you, I hope you have a wonderful weekend!

I am in Scotland at the moment visiting my family, me and my cousins went to airspace which is a indoor trampoline park! (It's also VERY good for physio! Haha) and then today we just went shopping for a little while. 

I feel okay at the moment my chest isn't brilliant but I am due my IVs soon so I'm not worried, however i keep getting really bad headaches and some nose bleeds, as my sinuses are playing up AGAIN! Which is really annoying as I've had 3 operations on my sinuses already.. We think I will be needing some polyps removed as that's what the surgeon said last time. 

Anyway, time for the exciting news!! 

As I am homeschooled I won't be having a school prom so I won't get to go dress shopping which I have been excited for since I was a little girl. So I had an idea, I want to have a Charity ball for Cystic Fibrosis. This way I can still buy a prom style dress have a good night with the people that mean most to me and raise lots of money for the CF trust! It's on the 7th November in a lovely hotel in Cheadle and I can't wait! It would mean a lot if some if you could come.

Thank you for reading, speak to you all soon.

Emily xox

First update of 2015..

I want to start by saying Happy new year! I haven't posted since December, as I've been ill, and busy so I've not really had the time!

But since last time I've had another course of IV antibiotics which I started on the 5th February (I think) for two weeks. But I've been having a lot of trouble with my portacath. For those of you that don't know what a portacath (Port) is, it's a little device under my skin which is connected to the main veins so when I have my IVs they get pumped through and can go straight into my system. I've had my port for around 7 years now, so the hospital think I've 'out grown' it, and after a lineagram, flushes and stuff pushed through to unblock it I've finally been referred to go to Manchester Children's Hospital to see about having a new one placed. We don't have a date through yet but hopefully we will soon.

I also had an appointment with my Liver specialist at Manchester Children's. It was okay, but some of the news could've been better to be honest! My liver is okay, it's still enlarged and scarred but that can't really get any better. However my spleen as grown around 3cm in less than a year (8 months ish) which is quite a lot, and as its growing it's 'eating up' my platelets, causing my platelet levels to drop. My Platelet levels should be 150, mine are 102. There isn't much they can do about it right now, we just have to keep an eye on me for easy bruising, or bleeding when I'm sick etc. If any of that happens then my DR said I'd probably need a blood transfusion and if my spleen keeps growing then it could be a possibility to have it removed in the future.

 

Other than all of this I'm feeling okay at the moment, apart from a little cold and sore throat but that's nothing I can't handle! I've also been training a lot lately, as in less than 2 weeks I have ICC nationals. One of the biggest Cheerleading competitions in the UK! I'm really excited to compete and to meet up with all my friends from other teams, I will update after the competition.

Thanks for reading guys, speak soon.

Emily xo

Paris and Christmas 2014..

Disney Land Paris 2014.

Hi Guys!
On the 17th December i want to Disney Land Paris with one of my best friends and her Family. We stayed in a lovely Disney Hotel in the Disney Village, and we had a great time going on all of the rides and meeting the characters!


Then on the 19th we got on a train and i had no idea where we were going, and it turns out that Jayne, Trevor and Paige were surprising me and taking me to the center of Paris to see the Eiffel Tower, Notre Dame, the Louvre and other things around Paris!  

It was an amazing day, and i was so glad to be able to tick it off my bucket list at last. 

Christmas 2014!

I hope you all had an amazing Christmas this year, and i hope that 2015 will be a good year, hopefully it will bring lots of fun, and of course good health!

I am so happy and grateful with all the amazing gifts i was given off my family and my friends, Some of the things i got are One Direction tickets for the 30th September, An Ipad Air,  Go Pro camera, and a lot more! I couldn't have asked for a better day, i spent it with my Mum and Dad, and half a day with my big sister Danielle.

This year was the first year in 3 years where i didn't have to have my IV antibiotics over Christmas and New year, so it was a good change being able to do what i want and not have to arrange things over my IV's schedule. So health wise i'm feeling pretty good at the moment. I have a bit af a chesty cough but the weather and things doesn't help, but i have CF Clinic on the 7th January.  

Thankyou for Reading, and if i don't update before Happy New Year!
Bye..xo