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

Annual Review 2015 - Part 1

Hello!

It's the time when we review the last year. Look at the good months and not so good months, changes and overall health through 2015.

An annual review is designed to look over all results of lung functions, blood tests, height and weight and admissions into hospital, and see how the last year has differed from others. We make plans for the future, possibly try new medication and make short and long term goals.

Just before Christmas I took a trip into hospital to do all the testing ready for my review in January. I saw my CF nurse and physiotherapist. I had to do many tests in the lung function box, such as blow out continuously before needing a breath, relaxed breathing and blow through a pressure valve to test resistance. When looking at the results at my review, we can tell how clear and open the bronchi are, and that the airways are not tightening or collapsing when coughing. Also, any troughs in the diagram can indicate wheeziness or possible infection.

After this I had a blood test, which was to check blood glucose levels, liver function and vitamin absorption.

Next I had an X-Ray. I sadly don't have the photo (hopefully getting it at annual review) but it looked clear, with a few grey areas on the top right of my lung. This means the airways in that specific area may have some inflammation. I have always had trouble at the top of my lungs, which is why its important to work my lungs hard and become out of breath often to use the full capacity.

I then saw my physio, we went over my current physio regime and what medication I am on. I then did the bleep test, which measures my all round fitness and stamina. I like to mix up my physio routine regularly because I get bored easily of the same equipment and exercises. When we discuss the results in January we will also talk about the various sport I part take in and how that works well with my physio, and overall health.

I will be writing a continuing blog post about the review later on in January with results. I am also meeting the Kings Team from London's CF unit to help with the transition into adult care.

Overall I think it went well, fingers crossed for positive review and a good start to the New Year.

Thanks for reading,

Nx

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

Cystic Fibrosis Trust Website

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

 

12 Things You May Not Know About People With CF - My Version

Hey everyone,

I recently saw a post on the Cystic Fibrosis Trust Facebook page which really caught my eye! The title was '12 things you might not know about people with CF'.
Surprisingly, every single point described me. I could really relate to the post so I thought I'd take the points they had made and interpret them in my own way.

1. We're stronger than we look
Now I'm not on about noticeably looking strong, but mentally. There can be many things going on in my life, and occasionally not all are positive. The way I stay strong is to filter the good and bad. Finding something that makes me happy and using that as a stepping stone to overcome the bad times. For example, when I am feeling down I will most likely go and see my horse. Give him a groom and enjoy the fresh air, or even put on some loud music and dance around in my room!! (It really helps).
To keep smiling and not let the sad times pull you down is my biggest trait. There's no point feeling sorry for yourself because you could be using that time to enjoy yourself.

2. We hate wasting time
Many people may not know but CF holds a lot medical needs. There are other important things we have to do before doing the things we really want to do! For example, taking my morning meds which include, 9 tablets, 1set of physio 2 nebulisers which have to be at least an hour aprat. Its a pain, and I'd rather be outside with friends or enjoying my sport. My aim is to try and get the medication finished as soon as possible so I don't miss out on the fun stuff but still stay well. That's why I hate time wasters. Why wait around in your pyjamas when the sun is shining outside and your wasting precious minutes each day. It baffles me. I am most likely not going to reach my old age and so I want to make most of everyday.

3. We think A LOT
I'm a worrier!! Anyone who knows me well will understand that I think way too much! I personally have a busy lifestyle which I love, however when I do get downtime I just tend to think about the short-term future, when my next CF appointment is, am I feeling well, and what do I need to catch up on. etc. I have a mental list in my mind constantly. I worry and wonder way too often and then wonder why I am worrying so much, and so on!

4. We don't want you to be our hero, but to just be there
I don't really like relying on people because I then don't feel in control. All I ever need is for close family and friends to be by my side. Not to always to be there when I am sad but to know I have close people around me who I can speak to. For example, when recently needing a course of IV antibiotics, it was so nice to have friends come and visit and just pop outside of the hospital for some fresh air. We even grabbed a Subway! Also when at a friends house for a sleepover and they have to wait an extra 10 minutes while a finish a nebuliser. Sounds silly but I appreciate it.

5. We grow up a lot faster than our peers
From a very young age I started become more and more responsible for taking my medication. Especially when starting primary school, and always remembering to go to the Medical Room when lunch time started so I could take my creon before eating. Yeah, sometimes I forgot but nobody is perfect! Also when making friends and knowing enough about my CF to tell them about it, so they could also understand why I took tablets whenever I ate. As I got older I had to start listening to my body and knowing when I didn't feel well or was starting to loose my appetite.
With soon transitioning over to adult care in the next 2 years, I am needing to take the next big step into being more independent over my health and fitness. It takes a lot of understanding but soon it will all fit into place.

6. We feel sick a lot more than we look sick
Sometimes I forgot what feeling "normal" feels like when I have been suffering from a chesty cough for over 2 months. My chest can become wheezy and it feels tight. I usually am waking up in the night coughing and trying to catch my breath. I can look pretty healthy from the outside but sometimes suffering from within. Its hard for people to understand when I am fully capable with keeping up with my sports class at college, but then have a coughing fit or need 4 puffs on my ventolin afterwards. Its all fun and games!

7. Our family and friends are the most important thing
I can't honestly imagine living without my amazing family and friends. Even though I am the one dealing with CF, I feel they are taking each step with me. It's hard to ask for help because I am so independent, but somehow when I really need them they're there, and I don't even have to ask.

The most important person I rely on is my mum. Big shout out to Mummy Lorna because she is my rock, my personal nurse and soul mate. She is with me at every appointment, has taken me to all my activities from the age of 3, been up each night when I'm coughing my lungs up, stayed in hospital with me when I have been very unwell, constantly nags me when I need to do my medication and given me the most enjoyable life possible!

8. We hate it when we cough in public
Having to travel on public transport each day to and from college in annoying as it is. When on antibiotics and suffering from a chesty (non contagious) cough, it is hard to keep sipping your water and swallowing because you don't really want to be coughing the whole journey and annoying everyone. Only a handful of times I've had people turn around and look at me, or make a face of  'oo that sounds nasty' when having to clear my chest after getting off the bus. I try not to make eye contact and if I do it's that awkward 'im fine' smile to reassure them I wont be giving them the plague!!

9. I'd rather be doing other things
The hardest thing about having CF isn't taking tablets, having stomach aches, colds and coughs or going into hospital, its not being able to have lots of time with friends and having to take time away to sit down and actually do the treatment. CF comes first but I would much rather be doing much more enjoyable things with my time. However, if I didn't spend the time on my treatment then I would have no time with friends as I would be in hospital for all of it. This is one of the many reasons to why I have a busy lifestyle. I want to be able to do as many things as possible which I love and enjoy but still keep up to date on my medication.

10. We love a good schedule/routine/plans set
Most of my life depends on finding and maintaining a routine that works. Without, I very easily get distracted and will forget or not keep track of extra medication. It is very hard to keep track of everything I need to take in order to stay healthy. For example, recently the amount of nebulisers I do have been increased. I am now doing 4 a day which is hard to fit in. It isn't the time in which the neb takes, but fitting them all in around my day to day schedule, including college. Its not like I am able to do the nebs all in one go either as there has to be at least a 1 hour gap between each dose. Therefore, at the moment my planned times are neb 1 at 7am, neb 2 and 8.10am just before I leave for college. Then depending when I get home, neb 3 is before dinner and neb 4 is just before I go to bed a 10pm. Doesn't sound too hard but that's one type of treatment out of many throughout a single day. With having CF, your treatment changes constantly. Most of the time, as soon as I am getting into one type of schedule, it will change and I have to adapt quite quickly. I love filling up my reminders and calendar on my phone to stay in the loop and keep up to date on everything. If I wasn't organised enough, I would find everything much harder.
Lastly, also knowing correct doses, doctors appointments, having prescriptions ready and all the rest that comes with living a normal life all needs to be in order!

11. Sometimes we just feel mergh
I rarely ever feel down or angry, but when I do its never towards anyone but myself. I usually end up feeling like this when I have had bed news from doctors or nurses, feeling like life isn't going my way sometimes. It can get me down. Others times I can find situations too overwhelming and need to take a step back and slow down. These times never last longer than a few days, but with the care of people around me, I always get back on top. I will never express my feelings of sadness or upset to many people as I don't like to be seen as wanting attention or sympathy from others.

12. We NEVER give up
I'm a fighter. I'll push for anything that I know will be beneficial to my health. Even when it seems like nothing could get any worse, things sometimes do and you just have to power through it. Because on the other side IS success!

I really hope you have enjoyed this post and possibly know a little bit more about me and what CF brings to my life. Here is the link to the original post I saw on Facebook if you want to check it out.
www.cflf.org

Nx

Cystic Fibrosis Trust Website

Instagram - instagram.com/nicskath_

Twitter - twitter.com/11nicolee

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_