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

Facebook - www.facebook.com/livingandbreathingcf

Youtube - www.youtube.com/livingandbreathingcf

Instagram - instagram.com/salty_sea_

Tips & Tricks When Travelling With Cystic Fibrosis - It's still possible!

I've had some amazing opportunities over this summer, visited some incredible places & met so many lovely people.

Travelling with CF was always a worry for me. But now I've done it, I want to inspire and help others with CF have the confidence to pack your bags and head off exploring!

I've been all over Indonesia, Northern Australia and Sardinia through the months of July, August and September. Preparing before hand, writing numerous lists and getting all my medication (and big quantities of it) was the hardest part, I needed to start this well in advance.
I would advise having a chat with your local pharmacy, and telling them about the trip you're going on. I believe this is super important as they can also advise you on suitable vaccinations, and better ways in which to travel with large amounts of prescribed medication.

Here are my tips and tricks in making it easier to travel with CF;

Preparation

1. Vaccinations - make sure you have been given the correct information regarding vaccinations for the trip. With having CF, I had to look at the "less common" vaccination options as us CFers are more prone to catch infectionsand need to consider ....... issues.
2. GP/CF Consultant advice - speak with your CF team before hand about when and where you may wish to travel to. I was advised to have 2 separate courses of IV antibiotics before leaving the UK so I was in tip top condition. 
3. Malaria tablets - Super important if you are travelling to any high risk areas 
4. Safety week - Always pack an extra weeks worth of essential medication with you. Just in case of delay, flight changes, or illness. Also, spread your medication between bags if possible to avoid issues with lost luggage.
5. Paperwork - Ensure you have an up to date list of your medication and summary of your current treatment regime from your CF team. Take a copy of your repeat prescription form too.  This may assist when passing through customs!

While travelling

1. Creon - You're going to be taking a lot of it! So ask your dietitian to prescribe 25,000 creon capsules not 10,000. You will need more pots of 10,000 and will go through them quicker so 25s is the way to go. 
2. Carry your insulin pen! - You never know where you'll be at the time when you'll need to take your units. I was either in a hostel, on a plane, train or coach at 8am so I knew that my best bet was to keep it close by me each day. 
3. Keep organised - whenever you have a spare minute in the evenings with your luggage, just sort all excess cardboard boxes, plastic bags and pre mix your nebuliser if needed. 
4. Week by Week containers - following on from being organised, take containers for your tablets! This was a life saver and one of the best ideas I had! Not for creon, but for antibiotics, vitamins, intraconazole, omeprozole etc . Each Sunday evening I would sit down on my bed and pop out all my pills for the week ahead. Then I would take the small container for each day and put it in my rucksack. So wherever I was for breakfast, lunch and dinner I didn't need to go back to my room or find my big luggage bag, the medication would be sorted and with me. 
5. Washing equipment - take a small ice cream container to use as your mini washing up bowl! It's great size to fit all the parts of your nebuliser, basket etc, and isn't too big to squeeze into your luggage. 
6. Consider that some medication may need to go in the fridge - you may need to be resourceful in locating a fridge to store medication. or freezer for ice blocks in some remote locations. (I used the ice cream parlor or fishmongers next door to my hostels) Don't forget to take ice blocks and cold bag. 
7. Take a mask - This depends on where you're travelling to, but I would advise taking an air pollution mask. I wore this when travelling through smokey or highly polluted areas, the jungle and small aircraft. 
8. Sharps!- keep all needles (mine were from blood glucose monitor, insulin and prepping nebuliser) in one place. Take lots of spit sample pots and use them as a mini sharps bin.

So there we are, it's possible to travel with any condition, no matter how much medication you need. It can be done!

I was travelling for just over a month, but if I was going for longer I would probably have had to take another small rucksack to fit more medication in! 

Any questions please leave in the comments below. 

I'll be posting photos of my travels soon! 

Nicole x 

Instagram - www.instagram.com/11nicolee_

Twitter - www.twitter.com/11nicolee

Facebook - www.facebook.com/livingandbreathingcf

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

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

 

Getting A Port - My Journey Part 2

Hello!

Quick update on my port journey. Since I last wrote a blog post I have had a range of thoughts and feelings as to whether a port is the right thing for me.

After having a recent clinic review, we booked an appointment to have an ultrasound scan on my neck. Yesterday was the appointment, in where they scanned the large veins which would be used to thread the tube from my port to my heart. Its important these veins are clear and strong to sustain the tubing. I will be getting the results back in the next few weeks.
The next step is to have another appointment with my doctor to discuss the scan results and any possible points of concern. Fingers crossed!

The main worries I have been having recently are the changes I would have to make if/when a port would be fitted. I thought if I wrote them in my blog, others might be feeling the same and we can help each other out with feedback and support.

1. Its permanent - If all goes to plan, I could have this port for around 10 years, before getting it changed. I don't think I am ready for a change just as big as having a piece of plastic on the side of my body for many years. What's the best way to get used to it? Do the first few weeks feel very sore?

2. If I wish to travel, or leave home for a long periods of time, there come issues of cleanliness, looking after it, and protection. Also, if I came across any problems I would most likely have to travel back home. Can I get help abroad?

3. Will it effect my career? - Wanting to work in Outdoor Adventure Sport, I don't want my port to stop me in joining in, assisting and teaching adventure sport. What can I not do?

I am very lucky in the fact that I have never had to have a port fitted before when I was younger, and that I am having the opportunity now to chose whether I wish to have a port.
However as I become older there is a greater chance in me needing more treatment, operations and blood being taken. So, a port would be prefect in having a constant point in which to enter and treat my body.

There are so many pros and cons along this journey, I still have a while to go.

Speak soon,

Nx

Follow me on social media for more frequent updates!

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

Getting A Port - My Journey Part 1

Hello everyone!

It has been over a month since I did my last blog post, cant believe where the time has gone!

I have been thinking about doing this blog post for a while but it never seemed to be the right time. However, over the last view months I have been discussing with my doctor about getting a portacath (port) fitted. It's has been something I have been thinking about for 1-2 years now, but before it wasn't a necessity. However, at this point in my life it seems to be the right time.
I had my first appointment yesterday with my portacath surgeon and I found out a lot of information, so I thought I would write a blog post on my views and experiences along the way. Like a short story.

Soon I will be moving to adult CF care and with having a port, it will make transitioning over easier and much more straight forward. When needing medication, the team will know how to use a port and taking the meds will be less stressful, hopefully making the whole experience better.

The main reason for getting a port is for confidence and anxiety reasons. From a baby I have suffered from 'dodgy veins' where they are not easy to access. I usually have lots of complications when trying to take blood, fit long-lines, cannulas and PICC lines, and nothing ever goes in the first time.
With needing these procedures often, my veins have gradually got worse and I usually suffer from inflammation, tracking and bruising each time.
With having a port fitted, I am able to take blood and give all medication through it, which enables me to suffer less pain and gives the veins in my arms and hands time to rest and recover.

A port can be fitted in various places around the chest area. A - it can be fitted on the top the chest near your collar bone (most boys have it here), B - in your cleavage area between your boobs, however this is an awkward place to give medication, or C - on the right or left side of your lower chest under your arm. (close to wear your bra strap comes round).
I chose option C because I felt this was the most discreet and easy area to access. Also I am able to cover it up with tops, and bikini straps wouldn't be a problem. Lastly, when using the port, it will be easy to find because I don't have a lot of fatty tissue in that area. This is better because you need to be able to grip the port when the needle goes in.
The port cannot be seen easily, however there will be a lump or bumpy edge over my skin. Depending on how much body fat you have, there will be a variation in how prominent your port sticks out.

The port itself is a small circular base, the size of a 50 pence piece which is stitched into your chest wall in a pocket between two ribs. The port base is connected to a tube which will be threaded into a large vein in my neck, over my collar bone and sits in the right atrium of my heart. This is so that the medication goes straight into the blood stream like any other line, however it is more direct. Also, the tubing from the port is thicker so it is less likely for clots to form and block it up.

The diagram below shows the needle being inserted into the port and where the tubing sits inside. The placement of this port in the diagram is option A.

(photolink)

My doctor told me that the average port lasts 10 years. Although, every patient is different and some may suffer from more complications than others, and possibly have to get it removed sooner. However, these ports are very well made, and it will be very unlikely that I would suffer from any of the complications.

With every operation comes complications, and with having a foreign objective being permanently fitted into my body, some problems may occur. For example:

• As soon as I have the port fitted I could catch an infection in the port. Sometimes antibiotics can help that, although sometimes the port has to be removed. 
• Rarely the port can flip over in the pocket. This can be resolved sometimes by hand but other times you may need additional surgery to sort it out. 
• Lastly, if the tubing become disconnected from the port or moves out of place, with ultra sound they will be able to detect the troublesome area, and with additional surgery again, hopefully to reconnect it or fit another port. 

For me, the pros out-way the cons. With suffering for many years I have come to having no faith and hope in any procedure running smoothly. When I really knew a port was the right decision for me was my last hospital admission back in June 2015. While still under general anesthetic from an operation, it took my doctor 7 attempts to put a long-line into my arm. When coming out of surgery with bruises and pain all over my arms I knew something had to be done!
From a young age my CF doctors and nurses have always jokingly said to me "you should give your body to science because your veins are weird!"

My plan is to be having the port fitted around the time of when I next need a course of IV antibiotics. This is because as soon as I have the port fitted it will be in use straight away and that is the best option than having it fitted and not using it for a few months.

My next appointment is to go and have an x-ray and ultra sound on the large veins in my neck. This is to make sure they are healthy and strong enough to with hold the tubing which runs to my heart.

I really hope you enjoyed this little blog post. My aim is to take you along with me through the journey of having my portacth fitted and how i'm coping after also.

There are some links below for more information about ports if you are interested

Nx

CF Trust Information Booklet On Ports

If you would like to give a donation to the Cystic Fibrosis Trust the link is here > DONATIONS

My links:

Twitter - twitter.com/11nicolee
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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
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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 

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