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_

Hello!

Why not start with a Hello!

Well this is my first blog post and I have no idea what I am doing!

My name is Nicole, and from my info you may know I suffer from Cystic Fibrosis (CF). The reason for starting up this blog is to not just to show my ups and downs of living with CF, but to be there for others who may suffer from the genetic condition or even others that are interested in finding out more about it.

My aims for this platform is to do a mixture of medical and lifestyle posts that link to day to day CF needs. For example, going for regular check ups at the hospital, having positive sporty days and not so motivational days, being an impatient and staying in hospital and finally transitioning over to adult care in London come next year.
A lot can go on and so I thought the best way to show others is by sitting down and just typing.

I don't know where this blog will go, hopefully on-wards and upwards but lets just see.

Speak soon,

Nx

https://twitter.com/11nicolee
instagram.com/nicskath_