My Journey Of A Lifetime (jolt)

Hello!

Some months ago my CF team received a letter asking if any of their patients would be suitable for nomination to take part in an exciting expedition. I was thrilled when they told me I was the first person to spring to mind, because of my love for activity and outdoor sports.

So we followed the application process and waited to hear if I'd made it to interview stage. At around the time of my annual review in January, we received a letter to say that I had been shorted listed from hundreds to attend an interview in February.
On the day I was very nervous but excited. The JOLT team were very welcoming, and it was so interesting to meet some of the participants from the pervious expeditions. Hearing about their experiences and how they had overcome their disabilities or personal situations.

It was then a long nervous 5 week wait before I heard back from them. To make matters worse, I had found out that my treatment plan regarding my CF was to change, and potentially put my chances of taking part at risk.

However, last week I recieved a very large envelope in the post which contained a letter congratulating me that I had been chosen to take part in the 2016 Journey Of A Lifetime trip to..... Indonesia and Northern Australia!
I was totally thrilled and ecstatic to be chosen to have this opportunity to visit such incredible places in July this year.

One of my biggest challenges is going to be staying fit and well enough to get there at all. But, in the meantime I need to raise funds for this fantastic charity, which proves amazing opportunities for youngsters with a range of difficult and challenging life situations. For people like me to take part, it's only possible because we will be accompanied by medical staff who can continue to monitor and administer treatment and medication throughout the month we are away.

I need to raise a minimum of £650 to support this charity so that they can continue to offer these amazing trips and opportunities which would otherwise be impossible.

Please take a look at their website and the incredible work they do. And if you feel you can sponsor me, I would be truly grateful of any donations to my Virgin Money Giving Page which is linked below. This is just one of the many ways I plan to raise money leading up to the trip. I have lots of ideas and planning ahead.
http://uk.virginmoneygiving.com/Nicole-Allen

Thank you for your support, please keep your fingers crossed that nothing gets in the way to stop me taking part.

I'll continue to keep you up to date on my health situation and fundraising progress, but I am so happy to have something to positive and uplifting to set my sights on.

Nx

JOLT Website - jolttrust.org.uk
Twitter - twitter.com/11nicolee
Instagram - instagram.com/11nicolee_
YouTube - youtube.com/livingandbreathingcf

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

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 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_