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_

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_