First post of 2017!

Hello everyone!

I want to start off by saying Happy new year to you all! (even though we are a month into 2017 all ready..)
I hope you all have had a lovely start to the year.

Anyway an update on my health.. To be honest I've been keeping quite well, I had a slight down side a few weeks ago, but the hospital gave me some antibiotics and I'm now currently on IVs for 2 weeks (one week left to go). So I'm feeling a lot better already. Starting my IVs was pretty strange this time as we are pretty sure that it will be my last course whilst under paediatrics! My out reach nurse who i have seen all the time from being just 8 years old put my gripper needle in and we were just chatting about the transition to the adult side of CF!

What else would a cheerleader do in the hospital?

Luckily for me, my current CF Consultant is following me to adults, as it is a new centre opening at my hospital in Blackpool so it won't be too much of a change all in one go. It's quite nerve racking changing CF teams, because I'm so used to certain nurses looking after me and It has been the same team since being diagnosed. So far i have met my adult  Liver specialist / gastroenterologist and he seems lovely, I've had 2 appointments there since transitioning only a couple of months ago. The first appointment was pretty much just to meet him, and talk about my health and get the result of recent blood tests. The second appointment was for a Fibroscan.
( Fibroscan uses elastography, which is a technique similar to ultrasound, that measures the stiffness of your liver. It is a non-invasive, painless alternative to a liver biopsy) 
The results for this scan come back pretty much straight away and it just confirmed that I do have Cirrhosis due to my Cystic Fibrosis related Liver Disease.

Anyway, Last weekend i had my first cheerleading competition this season, it was such a good weekend with my team. I competed in two routines, a Senior level 2 group stunt and Senior coed level 4 - We came 1st in both divisions! 

That's all for now, Thankyou so much for reading.
Lots of love,
Emily xo

long overdue update & my 18th!

Hello everyone!

wow, I'm sorry for not posting, again..

but lets get started on this update. In the past 5 months or so, I've generally been quite well I guess. I've had a few courses of antibiotics due to my chest feeling quite rubbish, but I'm now on IVs for 2 weeks so that will definitely get better! I started my IVs last Friday (28th October) and also did my lung function, which surprisingly was pretty good at 89% especially considering how low i felt.

It's almost been one year since I got diagnosed with CF related diabetes too, which has gone unbelievably fast, and I'm so proud of myself for coping with the injections, since I'm so afraid of them! They haven't been too bad if I'm honest though, and I'm 'lucky' that I only have to inject once a day as its a slow releasing insulin.

My Eighteenth birthday!

Last Month on October 15th I celebrated my 18th birthday! I spent it in Liverpool with my best friends and my sister. 

This is such a big milestone to reach, for any CF fighter, and I'm so blessed to have my family and friends behind me and supporting me in everything I do.

For my Birthday, my sister Danni also treated me to Afternoon tea, in manchester, followed by going to see Justin Bieber in concert.

Anyway, that's the end of this blog post, and I will make sure to update soon as I have a few appointments coming up, and will more than likely be transferring to the adult CF unit soon!

speak soon,

lots of love,

Emily xo

Port no.4...

Hi guys!

So it's pretty much been 2 months since I last posted an update.. sorry about that (again).

Not much has changed health wise, really. I have felt quite well the past few weeks, and the weather has been lovely too so I've been out enjoying the sun with my family and friends!

At the end of April, me and my parents took a last minute trip to Orlando, florida! We went to watch the cheerleading world championships in disney world, It is my dream to compete in the competition one day.
So we spent 2 weeks in Orlando, a few days were spent at the competition, and the rest of the days were spent by the pool and of course exploring the parks! Last time I visited florida I was around 10 years old so I wasn't tall enough for all of the rollercoasters. I sure made up for it this time!
We all had an amazing time meeting up with friends from around the world, we didn't want to leave!

One of my best friends Paige came up from London a few weeks back. She was here for a week so we had quite a few days of fun! We visited the Sea-Life centre, the Sandcastle waterpark, Blackpool Pleasure beach and more! We also had to travel up to newcastle as I had a cheerleading competition. Unfortunately I couldn't compete again due to injuring my ankle. It was a really lovely week, and I can't wait to see my 'twin' again in a couple of months!

Anyway, getting to the health side of things. So as I said earlier I've been pretty well. I've had a few chest infections as usual, but thats been fixed with a few courses of oral antibiotics.

At the moment i am just recovering from having surgery. I have finally had Portacath number FOUR fitted, So far so good. I have to get it flushed next Tuesday just to make sure things are working and to put some more heparin in the tube to stop it from blocking up. I'd prefer not to have it flushed yet as it is still quite sore, but obviously these things need to be done.

Getting put to 'sleep'

Before surgery.

Recovering, feeling a lot better.

Thankyou so much for reading,
Hopefully the next update won't be 2 months away!

Speak soon,
 Emily xo

IVs, Clinics and USA!

Hey everyone!
So the last 2 weeks has been full of hospital visits.. On the 5th April I started my IV antibiotics for 2 weeks. Since i still have have my Portacath I'm having to have cannulas. This can be really stressful for me as I'm so needle phobic, but i just get on with it as i know i need the IVs to make me better. That night when i got home to do my IVs we noticed that my line was leaking, so we couldn't carry on and had to go back up to the ward the next morning. it turned out i didn't need a new one and they could just re-position it, i was very thankful for that as i don't have very many veins left!

Wednesday 7th April

Wednesday i had my CF clinic at my local hospital, seeing my consultant, physiotherapists, dietician and outreach nurse. My clinic overall was quite positive but we are a little concerned on my Lung function. Back late last year my Lung function was in the high 90's to 100, however we have seen it slowly decrease over the months. It is currently sitting at 79%. My Drs want it to go back up to mid 80s after my IVs or it will mean i will have to start a course of steroids, have a CT scan, and a bronoscopy to see if there is anything going on in my lungs that they can't see. But I'm feeling quite positive to try and get it back up, just a few extra physio therapy and nebuliser sessions.

Friday 9th April

Friday i had to go to Royal Manchester Childrens Hospital (RMCH) for my annual CF liver clinic. In this appointment we discuss my liver function, my spleen, and all about my platelet levels. So my Last ultra sound scan was in July 2015 and the results show that my liver is still enlarged and scarred but is still functioning well enough, and not needed any treatment yet, which is great! 
The next subject was my spleen. So since i last saw her my spleen has grown 2cm which isn't too great (but it isn't too major either) it just means we have to keep a close eye. As this is growing, it is also 'swallowing' up my blood cells, causing my platelets to drop. Platelets should be around 150 is, mine are around 94. At this moment in time again isn't too major, but if they continue to drop i may bruise/bleed a lot easier, meaning i will need blood transfusions if necessary. 

My liver specialist also said that she is going to book an endoscopy for me. This is to see down my throat into my oesophagus to see if i have any varicose veins. Due to my spleen being large, it can cause veins in my throat to burst, if this is the case then they will need to band round them to stop this from happening!

So thats the serious stuff out the way. I am so excited because on Tuesday (19th April) Me, my mum and my dad are all flying to Orlando Florida!  We are going on holiday for 2 weeks and visiting all the theme parks, were also going to watch the cheerleading world championships! I finish my IVs the night before we fly, so that makes it even more exciting!

Thankyou for reading,
speak soon!
Lots of love, emily xo

Trip to the USA & another sinus surgery..

Long time no speak!
I hope you are all well, and enjoying the first few months of 2016. I have recently been to Atlanta (Georgia USA) to compete in one of the biggest National competitions in the world. I flew out with my team from Manchester, and we stayed in Atlanta for a week. We had training days in the week as well as two very long competition days.

The division we competed in was very tough and we were the only British team to compete in the whole of the competition! We competed in Senior Large Level 3, and there was 10 different teams in our division. Overall we came 4th! We were ecstatic with this result as we didn't expect to place in top 5, especially as we were just against the american teams.

Anyway, on to my health now.. To be honest I've been reasonably well the past few months considering I was quite bad over christmas time. Don't get me wrong I've still had a ridiculous amount of oral antibiotics to try and fight away the on going chest infections and just the general feeling of 'crappy-ness' but other than that I feel great! I haven't had any other lung function tests since last time as that will be due in my next CF clinic which i think is next month.

I am just recovering from another sinus surgery which I had on the 26th February. My surgeon basically cut out some bone from my sinuses and removed lots of polyps. This should eventually cut down my headaches and nose bleeds, however,  I can't really tell if it's worked yet as my nose still get quite blocked up at the moment due to it bleeding.

This week I also had a visit to The Royal Manchester Children's Hospital (RMCH) to have a CF & Diabetes clinic. It was my first proper clinic here other than my Liver clinic, but overall it went well. It was more of a Diabetes clinic though as I couldn't do my Lung function (PFTS) due to it not being my normal hospital. The nurse I met was so lovely, and she just made sure that all of my blood sugars were in the right 'range' of where they needed to be and that my Insulin is the right amount of units for me and doing the right job, which it is!

Thats all for now, but I'll be sure to update again soon,

Thanks for reading
Speak soon,
Emily xo

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