New Years Resolutions - Bucket List of 2016

Hello!

Better late than never to write about your new years resolutions! This year involves some big changes for me, some of which include - moving into adult CF care, going to University, turning 18, and the exciting future I have with the BBC Body Positive Campaign, and where it may take me.

I am so excited for this year and I want to make the most of it. Therefore I thought I would make a blog post for motivation and determination to see how many of my resolutions I achieve. Also, to incorporate some of my bucket list goals!

So here are some of the amazing/out of the ordinary things I would love to achieve in 2016;

1. Increase readers through my blog
2. Show more awareness for Cystic Fibrosis
3. Do a sporting event for charity
4. Complete a Gym Instructor course ✅
5. Continue to be positive and not let others bring me down
6. Take a trip to my favourite place in the UK - Cornwall
7. Write in my Q&A diary everyday
8. Make the most of each day
9. When I'm unwell don't let it get me down
10. Worry less, love more
11. Understand that everything happens for a reason
12. To not let my lung function drop below 70%
13. Compete more on my horse
14. Make more time to rest and relax
15. Be spontaneous
16. Be in a magazine column
17. Go to another festival
18. Take more photos
19. Go to Ascot - Ladies Day
20. Come out of college knowing I have worked my hardest 
21. Read more books 
22. Start a YouTube Channel ✅

There's just a few, but I may add more if I think of any others. Throughout 2016 I will keep coming back to this blog post and ticking off all that I achieve.

Thanks for reading,

Nx

Instagram  - @nicskath_
Twitter - @11nicolee
YouTube - youtube.com/livingandbreathingcf
BBC Sport Body Positive - @bodypositiveMyStory

BBC Body Positive

Hello!

I have an announcement! Some very exciting news! Over the past month I have been involved in a campaign called Body Positive, run by BBC Get Inspired. I have had the great opportunity to be part of it, and encourage health, lifestyle and wellbeing through having Cystic Fibrosis, and the variety of sport I participate in.
It’s not just sport related, but includes all aspects of physical and mental wellbeing. People may feel let down by their bodies, not just in appearance but in how well it functions. The campaign will primarily run across social media: Facebook, Instagram, Twitter and Pinterest, along with the BBC website. In addition, there will be some collaborations with other areas of the BBC, including Radio 1’s Surgery programme for a Body Positive special.
The aim of the campaign is to help, boost, and give positive advice and tips to those who suffer from self confidence, are not satisfied with their body, or also have a health or medical condition.
Wanting to build an online community of young people who feel confident and proud of who they are.
The campaign is being run over six months to show how lots of people cope with different everyday needs, but more importantly what makes them feel happy, strong and confident day to day and proud to be them.

The campaign's mission "is to inspire, empower and motivate you to feel BodyPositive"

I had to take a trip up to London on Wednesday to meet the team, film the VT, have an interview and discuss the plans for the campaign.

So, over the next six months the BBC will be posting videos of myself doing day to day treatment, days out, hospital appointments, and most importantly showing what makes me happy - riding my horse, dancing, listening to music, spending time with friends and going to the gym. Illustrating that even the small things can brighten up your day! I want to spread my positive and enthusiastic personality to those who need a friend to talk to or even make them happy for a small while. To also show awareness for Cystic Fibrosis and demonstrate what it really is, and how it effects me daily. Moreover, my aspirations and plans for the future.

If you would like to keep updated with all the videos, radio events and photos, please follow the links below to the Get Inspired - Body Positive web pages, and also my social media links for other CF related information.

I am thoroughly looking forward to the next few months, and what it may bring for the future. I am honoured to be part of this campaign, and I hope this will help many people.

Get Inspired - Body Positive

Instagram - @bodypositivebbc
Twitter - @bbcbodypositive
Facebook - @bodypositivebbc
BBC Website - bbc.co.uk/sport/get-inspired/bodypositive
BBC Body Positive Post - MEET NICOLE

My Links

Instagram - nisckath_
Twitter - 11nicolee
BBC Body Positive Post - MEET NICOLE

Cystic Fibrosis Trust 

Home Page - cysticfibrosis.org.uk
What is CF? -  cysticfibrosis.org.uk/about-cf
Article on NICOLE BODY POSITIVE - Nicole talks about body positive
Donate - cysticfibrosis.org.uk/ways-to-donate

Growing Up With CF - Becoming An Adult

Hello!

After seeing a recent video that the CF Trust uploaded onto their Youtube channel, I thought I would use some of their questions to make a new blog post. To share my own opinions, views and experiences of what's it's like being a teenager with CF.

How does CF impact on my life?

It affects me everyday. Constant need of medication and physio to keep me well.
Being able to enjoy time with friends, going to the cinema, having nights out or going out for lunch. I have never let it hold me back.
The main impact it has had on my life is time management! Trying to fit everything I want to do, and everything I need to has been hard! I never want to miss out on all the fun, but to do that I have had to keep on top of all treatment otherwise I would become ill.
From a very young age I have participated in a range of sports. I have continued to enjoy sport now nearly 18 and I believe it has been one of the main reasons I have kept so well. Filling most of my life with sport has lead me to not miss out on as much as I could have done. Still participating in competitions, either in dance or horse riding.

How do I incorporate my treatment into day-to-day life?
I have to plan my time accordingly, especially when needing to take extra medication in the morning. While at college, my timetable varies, and therefore each day is different. Since starting a part time job in 2014, I had to make sure I made time before and after work to complete all treatment, and have enough time before bed. I have to be organised and think ahead of each day. It can be hard when it comes to half terms and school holidays when a routine can drift and it becomes harder to keep track of day-to-day medication.

When I was younger 
At a young age I remember forgetting I had CF and always accepted I needed to take medication and do regular physio. I remember evenings on the wedge with mum and her always making it a fun activity even when I didn't want to do it! One other memory I have as a young child is adults or older friends asking me "what do you suffer from?" I used to answer with "It's called CF but I don't know what it means" !
As I have become older I have learnt to deal with being an inpatient and understanding what treatment I need. I have still been able to take part in school sports days, discos, and trips away, but only if I stay on top of my treatment.









What are my plans for future?
2016 is going to be a scary year! After just applying to University for next year, I'm slowly having to take control of all my medication and treatment. I'm planning on using my long summer ahead to possibly travel, achieve my NPLQ beach lifeguard qualification and just enjoy the time off!  For the long term future I want to possibly take a gap year and work abroad! This will depend on my health and how well I am throughout the next 3 years go an Uni!




Does CF effect where I want to go?
I have applied to University not too far from home as I know I need to be in close proximity of my family and CF team. It is important to make sure it's not hard to get home if I become unwell or need to be admitted to hospital. Also, with regular hospital updates, and 'home' visits to consider.

How am I feeling about transitioning to adult care?
It worries me. I don't like change, and it will be a big step for the future. I have had the same nurses and doctors since birth, so it will be hard to say goodbye after making strong friendships.

Has cross infection made it tricky?
Many years ago CF research hadn't shown that cross infection was a problem between CF patients. It used to be possible to meet up with other people with CF and discuss our problems and fears with each other. However, it was then shown that infections can be passed when in close proximity with another CF patient. Fotunately, since the internet has grown, we have found different ways to communicate.

Has the use of social media helped me?
YES! The power of social media has helped so many people around the world to share their lives, experiences and worries with each other. Making friends, having questions answered, and a platform to talk to one another. The majority of my Twitter feed are other people with a CF background. Either mums, brothers, uncles, friends or even themselves who have CF. I believe there's a great community where we chat and support each other every day. Also through useful websites, where lots of interesting information can be shared, and new research from gene therapy can be documented.


Nx

Twitter - twitter.com/11nicolee
Instagram - instagram.com/nicskath_

www.cysticfibrosis.org.uk/
https://www.youtube.com/user/CFTrust

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

Instagram - Instagram.com/nicskath_
Twitter - twitter.com/11nicolee

I do more recent updates on Twitter and Instagram so please come and follow me if you are interested in more CF news

 

Having a course of IV antibiotics - My Story Part 3

Where to start?

My second week of IVs seemed to be very positive. I was able to have a few days at college and get outside. Nurse mummy was in full swing, coming over to my college to administrate my treatment for the 3pm dose. We were both very tired but it all seemed to be running smoothly.

Then Bank holiday weekend approached. As usual we go to connected the evening drip to my line, although out of nowhere blood starts pouring out. Not from the line itself but from the entry point of my arm.

Next morning, bank holiday Monday I made the trip back in hospital to see the nurses. Non of the CF team were obviously in so I got seen by a ward consultant. By this point, the sticky window covering my line has all dry blood. So I get my window changed and they flush my longline again. Thankfully it works. Not understanding why it is working then and not the night before but I was very revealed.

Monday night approaches, yet again we go to connect the drip to my line and blood starting to come out my arm. To our annoyance  we suspected this was going to happen! So there we were, Tuesday morning back in hospital to get my longline looked at. My CF nurse was this time able to pull the line out slightly as he suspected a valve in my vein might have possibly got stuck at the end of the line, or that I had some inflammation. This sometimes happens when the vein starts to reject the plastic tubing and swell up. Leaving less room for the medication to be pushed up into the vein.
I was only just finishing my 2nd week of IVs and was concerned I may have needed another line fitted to keep my going till the 11th May.

This idea had seemed to of worked because Tuesday night and Wednesday morning the medication went through perfectly. However, then came the 3pm meds. This medication did not go through and by this point mum and I had had enough! I contacted the hospital and the next best option was to come in and get a cannula fitted to last me till 11th May. I wasn't happy but didn't want the course of IVs to stop so I went with the idea. That night I had my cannula fitted, did my 11pm medication at the hospital and came home. The nurses on the ward seeing me that night were reluctant to take out my longline because it was the CF teams line, therefore they didn't want to touch it. And also it was so intermittent that if my cannula packed up my longline could be a back up.

Over that weekend the cannula was very sore and blood kept clotting in the small tube. I was reluctant to let medication go through it as it was very painful. On Friday night my longline starting bleeding for the 4th time and by this point I had no faith in it.
Saturday 9th May I made the last trip over to the hospital to ask to get both the cannula and longline taken out. I had managed 2 and a half weeks of IVs, and couldn't bare to have any more complications.
I was feeling much better but wasn't where I wanted to be.

Has anyone else had these types of complications with longlines and cannulas? Please comment below

More information on longlines -  http://www.rbht.nhs.uk/healthprofessionals/clinical-departments/paediatrics/childrencf/admission/venous-access/

More information on cannulas  - http://www.gosh.nhs.uk/teenagers/your-condition/tests-and-treatments/intravenous-iv-cannula

Twitter - twitter.com/11nicolee
Instagram  - instagram.com/nicskath_

Having a course of IV antibiotics - My Story Part 2

I always like to start off my treatment with a BANG! Hit it on the head and tackle the problem.

The first 2 days were very positive, having morning physio and using the hospital gym. Doing about 10-20 minutes on the treadmill and 5-10 minutes on the cross trainer. At this point I felt motivated and had lots of energy.

However as the IV treatment started to kick in I was feeling worse every day. My medication times were 7am, 3pm, and 11pm so I was having late nights and early starts. Not to mention being woken up in the night for SATS readings.

One week into IV antibiotics and by this point I was feeling rather tired. Only being able to achieve 5 minutes on the treadmill at best or just a walk up and down 4 flights of stairs was enough before I felt lightheaded.
The main reason for staying in hospital for longer was to try and shift the mucus in my lungs with some more guidance and help from my physio. Before exercise I would do a hypotonic saline nebuliser to shack up the airways and target sticky areas, therefore hopefully bringing up secretions would be easier. After exercise I would sit on a gym ball and start some AD (Autogenic Drainage). This is a breathing technique that uses controlled breathing and the least amount of coughing to clear secretions from the chest. As my mum would call it 'Yoga for the Lungs'. For me I could hear and tell I was shifting the mucus but not being able to bring any up.

I had a midweek review with my CF team. I had a lung function which had actually dropped from 85% to 83%. My doctor explained that this is a common issue because you targeting the lungs with treatment, you tend to blow a lower percentage. It wasn't what I was hoping but I could tell the treatment was doing something.
I started a course of steroids to try and reduce inflammation and help clear airways, and planned to carry on the hypotonic saline at home. I had a chest x-ray which looked ok and did not show any significant difference from my last one dated January 2015.
My doctors came to the conclusion that a 2 week course of IVs wouldn't be enough, therefore extending the treatment to 11th May to make it a 3 week course.

I was able to finally go home Saturday 25th April with  IVs on order for another 2 weeks. There was nothing better than hopping into my own bed that night and knowing I was going to get a full nights sleep.

January X-Ray LEFT
April X-Ray RIGHT

Part 3 - week ending 17th May

More information on Autogenic Drainage - www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=26347&type=full&servicetype=Attachment autogenic drainage

More information on Hypotonic Saline - http://www.rbht.nhs.uk/healthprofessionals/clinical-departments/paediatrics/childrencf/respiratory-care/hypertonic-saline/ 

Twitter - twitter.com/11nicolee
Instagram - instagram.com/nicskath_

Having a course of IV antibiotics - My Story Part 1

With having Cystic Fibrosis there comes complications.

Especially throughout the winter months we struggle to stay away from chest infections due to the cold damp weather.

If you have the issue of having a chesty cough or if your lung function has dropped, usually a 2 week course of oral antibiotics will do the trick. However sometimes it cannot fight the infection. 

In my case, I was able to get past the winter months with no cough but I couldn't keep it away for long.
in April I started coughing. It wasn't the usual cold cough but something was lingering in my lungs. I was becoming very wheezy and my chest felt tight. With already doing a 2 week dose of oral antibiotics, nothing had shifted. 

The next best treatment was to go on a course of Intravenous Antibiotics (IVs). This is a more direct type of medication that goes straight into the blood system, therefore fighting the infection harder and quicker.

Other CFers will understand the annoying pain of then having to go into hospital to have the treatment. Usually doctors prescribe a 2 week course which should subside or get rid of the chest infection. When needing the treatment you have to be fitted with a line so that the medication can be given through a vein straight to the targeted problem. 

There are a range of lines that can be fitted:

For younger children to teen years, normally a longline  is fitted (A 30cm plastic tube that is inserted into a large vein).

For older CFers they usually like to fit a PICC line. (A 30-40cm plastic tube that is also inserted into a vein, however this tube is much larger and so ultrasound is used to find the right vein)

Finally, some children or adults with CF might have a port fitted. This is a small plastic device that is inserted under the skin as a permanent entry point for medication to go into and blood to be taken out of. It has to be fitted under general anesthetic and lasts for around 5-10 years.

So, on 21st April I became an impatient. (I was fitted with a longline and not a PICC line due to complications from my last IV course when a PICC line was fitted)
Luckily for me I have been very well over the past year and a half and so I have not needed extra treatment, however this meant now that I was an impatient that I needed a full M.O.T.

Part 2 - Week beginning 11th May 

Twitter - twitter.com/11nicolee
Instagram - instagram.com/nicskath_