RECAP OF 2016 - ups, downs, exciting opportunities, and incredible support

Belated Happy New Year to all my lovely family, friends, fellow CFers & supports!!!

If I had to use one word to describe 2016 it would be 'roller-coaster'. I went through so many ups and downs, it was a crazy year!
Let's cast our minds all the way back to ...

January 2016 - Was the launch of BBC Body Positive Campaign, which was aiming to motivate, encourage and uplift the mood of those all over social media to be happy with their bodies whatever their shape, size, background, scars, or surgical implants.
I made a video of my life with Cystic Fibrosis which was broadcasted on the BBC website & all social media platforms. I got such a good response, and was so grateful to be a part of it! - bbc.co.uk/sport/get-inspired/bodypositive

February 2016 - Saw me having to go into hospital for my first course of IV's of the year. Although this time it was exciting as I was getting my first portacath fitted! After so many years of long lines not working, picc line trouble and silly cannulas I knew that it was time to get something a little more permanent. I made a Youtube video of my journey so go check that out - My Port - New Beginnings
Also in February I went for a secret interview with the JOLT Trust for a possible exciting adventure!

Moving onto April 2016 - Which sadly wasn't my month! Getting the news that doctors in the lab had found I was growing a horrible infection called Mycobacterium abscessus. 
Not only was it a horrible infection, but it needed vigorous and horrible treatment. This meant me going back into hospital to try and start depressing the infection in my lungs. I had an operation called a Broncoscopy, where they took six samples of mucus from the depth of my lungs to send for testing.
This then triggered a 3 week course of horrible IV antibiotics (so thankful I had my port now) which meant meaning having IVs every 8 hours 7am, 3pm & 11pm and an infusion drip at 4pm.
Through nausea, sickness, and overall exhaustion I thought I was finally finished at the beginning of May...
But No! Two days after being discharged I had an allergic drug reaction to one of the multitude of drugs I'd been having. Leaving me in fever the same evening at home & being rushed back into hospital by ambulance that morning.
Back on other IV medication, fluids, creams and antihistamine for another 3 days. The rash had completely covered my body, caused swelling, bruising and I was in so much pain!

After 2 weeks, the rash finally disappeared and I was free to go home.

12th May - I also took part in the craze over the internet called 'The Strawfie Challenge' which was to help spread awareness of Cystic Fibrosis by breathing through a straw for a minute. This is what it has shown to be like living with CF everyday. So many of my friends took part, so I thank you lots xxxx

- Strawfie Challenge post

June 2016 - came around SUPER quickly as I had been chosen to take part in a charity trip of a lifetime called JOLT (journey of a lifetime). Jolt are a charity which aim to achieve all impossibles! Every other year they take 18-21 students aged 16-20 around the world to experience new adventures, places and experiences that they quite possibly wouldn't have been able to on their own. This could have been due to a lose in the family, long term illness, physical or mental disability and everything in between. 

I was very fortunate enough to be nominated by my CF consultant and CF nurses at Brighton for the JOLT trip. After writing a letter as to why I think I should be chosen, getting shortlisted, and then an interview. I was picked to be one of the 18 people that got to go! 

July 2016 - JOLT took us to Indonesia and Northern Australia for 4 weeks of crazy fun! I faced new challenges along the way, but I feel the trip changed me for life and I am truly grateful to have had the opportunity to go. I've made friends for life  - jolttrust.org.uk 

When returning to England in the middle of August I had a brand new outlook on life. I knew my aims, and was happy in my own skin. I knew I could look after myself with all medication and have the confidence to spend a month away from home. 

I wrote a blog post about - Tips and tricks to travelling with CF

September 2016 - I knew that when returning back to England from my trip away that I was in need of a tune up. That meaning more IVs just to get my body back in tip top condition. I had just over 2 weeks of treatment but was allowed to finish the course at home. Knowing this was my last admission at Paediatric hospital in Brighton. 

End of September 2016 - Had a very exciting call from Mark Warner Holidays! After applying to work for them in 2017, i got an unexpected call asking me if I was able to finish the Summer Season at their resort in Sardinia, being their one and only Fitness Instructor. Well, since knowing I could happily look after myself for 4 weeks travelling I jumped to the idea and said yes! 

What an awesome experience. i could put all my skills, knowledge and qualifications to work and teach on a beautiful sandy beach for a job! It was hard work, teaching 5-6 classes a day but I LOVED IT! 

Fingers crossed I bag myself a place for 2017....

November 2016 - Came the month that I had to bid farewell and say my goodbyes to the paediatric CF team in Brighton. To myself and mum, they are our second family. The first consultant my mum met in Brighton when I was born, is still my doctor 18 years on. I am so lucky to have such a wonderful team in Brighton, and it was so hard to leave. - Saying Goodbye x

December 2016 - Bought exciting new start to CF life as I had finished my transition to Adult CF care, and was now under Kings College Hospital in London. Mum and I took a visit up there to see the medical ward, meet the rest of the staff, and have a check up before Christmas. I filmed it all and posted a video on my Youtube channel, so go and check it out! - Kings Visit 2016

End of December 2016 - And to top off the year, I was told that the entertainment business that I have previously done dance tours and panto with this year, had chosen Cystic Fibrosis as their chosen charity for 2017! It means so much to me that I have a fantastic support network and people/companies/businesses are going out of their way to help. You ROCK Full Beam Productions!!!! - Fullbeamproductions

So there we have it. That's 2016 wrapped up in a nutshell! What a year, through so many good and bad times, but it is always so important to look on the bright side and find the positives out of bad situations. Thank you to all those who have been with me every step of the way, liked my Facebook page (close to 500 likes!!), commented on my Youtube videos, and chatted with me on Twitter. So much love goes out to you all

What will 2017 bring? Well your just have to wait and see :) 

Nicole x 

Twitter - www.twitter.com/11nicolee

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CF Clinic - 9th October 2015

Hello!
On Friday I had a CF clinic appointment. I have these around every 3 months, and this time I thought I would write about how it went for you to have an insight of what happens.

The main reason for having regular updates at hospital is to make sure I am staying well, keeping a good weight, not becoming ill, or needing to change medication. It's a chance for my doctors and nurses to check up on me and see how I am getting on.

Each time I am there I get weighed and measured. This is to make sure I haven't lost weight since my last review and to make sure my weight and height is matching on my growth chart. As I am now 17, I stopped growing over a year ago and so haven't grown any higher than 164.6cm (5foot4). Now that I have stopped growing it is a case of keeping a steady weight and not dropping off suddenly. I have to maintain it, making sure I don't drop below the 50th centile in my growth chart.
My weight has been a little up and down recently, hovering around 55.1kg and 56.5kg. To someone who may not have CF, a few .0kg is not that substantial. However, each kg counts! As soon as I start dropping off it is very hard to put weight back on. Also, the more I weigh, the most fat there is on my body. Therefore I am able to keep me warm and have more energy to fight day to day infections, colds and illnesses and not become so ill. Happy to tell you my weight had improved to 56.9kg! Putting on nearly 1kg in only 3 weeks since last being weighed.

Next I go for a lung function. This is used to measure my Fev1 (Forced Expiratory Volume), how much air I can expel in the first second. If the percentage result is low it can sometimes mean you are tight chested, wheezy or have thick mucus in the airways. Because I do a lot of sport, my Fev1 has never fallen below 73%. I have been able to keep my chest relatively clear. CF patients Fev1 can vary according to how severe their particular condition is.
Since being in hospital back in June, my lung function has slowing increased. After putting on weight while on steroids and just finishing a course of antibiotics, it was slowly on the up! I hadn't hit above 92% for over a year and so my aim by the end of 2015 was to try and get it back to where it used to be. Well, hard work pays off... and after doing extra nebulisers, a long course of steroids and antibiotics, putting on weight and fitting in some AD, I blew a percentage of 95! I was very chuffed with myself as I knew it was possible with a bit of determination, and pushing myself when exercising. (Pictures at the bottom)

Next I sit down with my doctor, CF nurses, dietitian, and physio. We discuss many things including my current medication, how I'm feeling, eating habits, physio technique, AD practice, and what our next step is for the next few months. Also, my doctor listens to my chest and feels my stomach for any sore, uncomfortable or firm areas.

Lastly, I have my HbA1C blood sugar reading taken. This is to check the amount of glucose in my blood stream. If too high (over 6-7) can main I may need to take insulin due to having hyperglycaemia (hyper – when blood glucose rises too high) . Red blood cells live for 8-12 weeks before they are replaced, so by measuring my HbA1C it can tell me how high my blood sugars are on average for last 8-12 weeks. My result was 6.4 which meant that it is ok for now, however diabetes is on its way and so I may be needing to take insulin again in the near future.

Overall my doctor was very pleased with my progress in the last month and allowed me to stop the antibiotics. Also to take 10mg of steroids every other day instead of each day. My dietitian has always loved how much I love my food and was pleased I had put on weight. We mainly talk about my favourite foods at the moment and crazy food challenges we have seen on the internet! I always end up telling him my new fatty snacks that I make at home for him to try! My physio Lucy has always been so pleased with all the sport I do, however I don't always do my AD clearance. So we worked on that and she gave me some tips to maybe breath through a tube as it helps control my breathing.

We discussed Uni and what my plans are for the future. How I am going to adapt and where I am planning to go. We also briefly spoke about my port journey and what the next step is for that too. (Planning on writing a another blog post about that soon).

So, overall it was a very successful clinic! My weight is up, lung function has gone from 88% to 95% in a few weeks! Doctors are happy with my progress.
I'm going back again in a month for a check up and hopefully I am able to come home with same good news!

Thank you so much for reading this mammoth post. I hope you feel very informed and now know a little more of what happens when I go to hospital. If you have any questions please comment below or send me a tweet on Twitter.


Speak soon,

Nx

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