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

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