Major updates & last post of 2015!

Okay, so first of all I want to apologise (again) for not posting regularly.. The past few months have been quite busy with hospital trips.

So after my last post in October, I went for my 3rd Portacath operation, the operation was successful and I had a working port up until about 2 weeks later and my port decided to break again. It only lasted 1 week of IVs. The line kinked again In my chest, causing my port to block.

At the beginning of November I held a charity ball for Cystic Fibrosis, it was a fab night, and we raised a lot of money! 

After all of this I then had my glucose tolerance test for Diabetes, I have this every year as a precaution so I didn't think anything of it. However this time when I went back into clinic, my blood sugar levels in the test were 11.0 which is very high after 2 hours of waiting. To make sure this wasn't a false test they decided to do a CGMS test on me for a few days, a little device sat in my stomach to measure my blood sugars non stop, as well as doing regular finger pricks.

Obviously it all came back positive and I am now injecting myself daily with insulin. 

My lung function has dropped 13% from 93%-80% so I am currently on my IV antibiotics for two weeks, but I'm having to have it through a cannula as my port is still broken, I'm on my 3rd cannula in 1 week as my veins keep collapsing.

Anyway I hope everyone has had a lovely Christmas (and soon to be new year!) 

 

Despite being ill I had a lovely Christmas at ho,em with my family. Sorry that this blog has been a bit jumbled, just trying to update in everything that has happened in a brief way.

Thankyou for reading

Speak soon, 

Emily xo

Happy birthday to me!

Hi guys!

Today was my 17th Birthday! I've had a lovely day even though I'm not feeling 100%.

We went to Manchester as I wanted to go shopping, and then we met up with some friends to go for dinner.

My mum wasn't able to come out with us either as she isn't well :(, we will have to make up for it in a few weeks after my operation!

I've received some lovely gifts and cards, and just want to say a massive Thankyou to everyone who has wished my happy birthday, it means a lot:) 

Thankyou for reading,

Speak soon, 

Emily xo

Updates...

Hi everyone, it has been a while since I last updated.

Not much has changed to be honest, I'm not really feeling great at the moment, I am a little run down, and my chest is a bit rubbish. I've had one weeks worth of an antibiotic called augamentin duo, however that hasn't helped, and if anything i am feeling worse than I was a week ago. We went back up to the hospital today and I got another two weeks worth of Cipro (another antibiotic).

We're trying to put off having my IVs at the moment as I would have to have a long line in my arm again, since I haven't got my new port yet! 

I am getting my new portacath on October 21st, so that's the date I'll be starting my IVs. I'm excited to have my port again, and to get rid of 'Boris' (the bump that appeared on my chest) as it can be a little painful sometimes. But at the same time I am obviously a little nervous as it's still under a general anaesthetic and it can cause pain after the operation. I will update about this after my operation, but hopefully this port will last longer than 2 months! *Fingers crossed*

Anyway, it's my 17th birthday on the 15th, next Thursday to be exact.

I'm excited as I've sent off for my provisional drivers licence so I will be able to learn to drive, finally! I am also going to b going out shopping with my family, and then going to velocity trampoline park at the weekend with one of my friends so it should be good!

That's all for now, I will update soon.

As always Thankyou for reading,.

Speak soon,

Emily xo

- A photo a took when I was on my IVs last Time, I had to have a long line in my arm.

Port failure again!!

Hi everyone! 

It's been a while since I last updated, I've been quite busy with my cheerleading and some other things. Any way it's been about 2 months since I had my 2nd Portacath fitted, and it was healing nicely, and the first flush went really well. 

Then a couple of weeks ago I noticed a bump in the front of my chest, near a little scar. We didn't know what it was so we mentioned it to my outreach nurses and they thought it was a stitch just by looking at it so all was fine! I then had to go for my Second port flush (I have one every month to make sure my port doesn't get blocked) We tried multiple times to get it flushed and in 2 different days, But for some reason the fluid wouldn't go in, and it appears that my port has blocked up already, and it seems like the lump on the front of my chest is apart of the tubing from my port.. 

It's quite annoying as it has only lasted one lot of IVs, and not even 3 months!! 

So I have to get referred back to Manchester to get a new port placed in, My next lot of IVs will be on the 4th August, which means I will have to have a long line placed in my arm! (Which I HATE) 

Anyway on a brighter note, I had my last competition of the season for cheerleading last weekend, and we came first and Grand Champions (overall high score!) which was an amazing end to the season! I have also been selected to compete in America, with my new team Rising Stars Storm, we will be competing in Cheersport Nationals, which is a huge competition in Atlanta!

Thankyou all for reading, and as always the continued support!

Speak soon,

Emily xo 

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