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_

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

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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

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