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

IVs are finally over..

Hi guys!
I started my IV antibiotics on the 12th November for 2 weeks and i just finished them on Wednesday (26th)!
Sorry i haven't updated whilst i was on them, but i just didn't feel up to it really. I was just so tired and all i wanted to do is sleep. But i will update you all now :)
-
So i went into the hospital, and got my needle in. I usually have the smallest needle that they do but unfortunately they had stopped making them so the one i had in was the same length needle but the plastic part which holds the needle was way too big, i couldn't even put my arm down properly without catching it. And it took 4 attempts to get my needle in, in the first place so my Portacath itself was hurting for the first few days of my IVs.

But it's all over now, I'm feeling so much better and i can finally get back into Cheerleading, having fun, and most of all start getting excited for DISNEY LAND!
I'm going to Disney Land Paris on the 17th December with one of my best friends and her family.
We are really excited to go, and we have been waiting nearly all year, and it has finally come around so quick!

Thankyou for reading, i will update again in a few days..
.. Bye xo

Time for IVs again!

Hi guys!
So as you all know I've not been feeling 100% since i came off holiday to be honest.

But some how I've managed to stay away from the IVs this long, just being on a few oral antibiotics every now and then.

But now it's been 12 weeks and i can tell that i really do need my IVs, so I'm starting them on Wednesday..

I'll update more on my IVs, how the hospital goes and if i get the results for my PH study on Wednesday or Thursday!

~Halloween!~

I hope everyone had a good Halloween?
I went to the Pleasure beach with my best friend, and a friend from Essex, that i met in turkey!
We had a really good night, Then on the Saturday me and my family, and our friends from Essex went to our friends Halloween party, I was Alice (Alice in wonderland) , My mum was a Vampire and my dad was Beetle juice! It was such a laugh as i had never seen them dress up before!

Thankyou for reading guys, speak to you soon, xo