Physio for Zac is either 15 minutes of patting his back, front and sides or, if lucky, he'll breathe through his PEP device (Positive expiratory pressure )- Ellie and Luke hope he'll soon always use the latter as it's easier and better for him to take control. Tess uses her Nebuliser first, before breakfast. The next part of Physio is approx half hour after breakfast and involves doing 5 reps of ten 3 second breaths (on her PEP) with a cough and hock at the end of each rep to try and clear the lungs. For a 6 year old, this is a trail and Tess certainly doesn't play ball all the time.
On top of this they take medicine, which can vary at times and dosage amounts depending on their well being. Ellie and Luke have a kitchen cupboard filled exclusively with CF medicines. The value of these items is over £50 a day, which gives you an idea of the costs involved in treating such things as CF. Ellie spends a lot of time having to clean the syringes every week to reuse for the next week.
Aside from all this, Erin, who's 4, is fortunate to have no CF problems, however, she also takes medicine on a less frequent basis to help maintain her immune system so she doesn't brings bugs into the house. Because of the CF, Tess and Zack both struggle to shift bugs if they pick them up. However, whilst I was there they were all running round plenty and kept me well exercised in the park playing the monster/ pushing them on swings and following the secret path! Tess then showed me an example of what she coughs up from time to time - which was a less than delightful looking mucus deposit on top of the Sylvania family's house in her bedroom! (Tess fondly called it frog!)
The lovely "Hocking"
After a vote in Autumn 2010, Cystic Fibrosis Trust won over 52% and therefore were nominated as my my charity for 2011’s anniversary year. As I didn’t hit my £10,000 target I have committed to CFT for 2012. To get a better understanding of what living with Cystic Fibrosis (CF)is like, I spent a weekend (Friday evening through to after the school run Monday morning) with a family who have two children with CF. Ellie and Luke are good friends and were
Below is a full account of the weekend, to give you some idea of what life's like for CF sufferers. It's by no means comprehensive in terms of educational as there is so much more to know about CF, but it gave me a better understanding of what I'm fundraising for. I also saw the family again in late 2011 when we filmed my visit to add to footage of some of the tests they go through. For more details about CF go to the Cystic Fibrosis website. You can see the video about being a CF sufferer with the k the family at YouTube. You can also support my fundraising efforts by going to my Virgin Money page
Cystic Fibrosis Trust is about conducting research to help support or potentially cure CF as well as offering support to those with CF and their families. Around 8,500 people in the UK have CF, which is caused when two people carrying the same faulty gene have children - the likelihood of a child having CF is 1 in 4 in this instance.
My friends, Ellie and Luke, have had three children, Tess (Teresa as she told me she now wants to be known!), Erin and Zac. Tess and Zac both have CF. It was therefore a great way of finding out more by spending a weekend with the five of them and doing whatever the kids did. Anyone who knows me well will know that the idea of getting up early is not my idea of fun plus I'm not renowned for my skills in dealing with children, so the weekend would be a good challenge!
I arrived Friday night and Zac appeared from his bed, followed, in turn, by Tess and Erin - seemed they were excited about my visit and wanted to say hello! Zac was then into his parents at 5am asking if he could wake me! Thankfully he was told to return to bed - but by 7.25 I was duly woken as the kids were up! In the morning Tess and Zac have physio, which is to help them cough up excess mucus from their lungs, where there's, basically, debris sat under them which reduces their intake of breath and makes them sound weasy at times. Most notably they sound raspy in their voices, which becomes more apparent as the day goes on.
Monday morning's school run was a bit more intense as the Physio has to be done before leaving for school on time. Luke took advantage of my presence and left me doing the breathing exercises with Zac and Tess on the sofa - how hard is it for me to count five rounds of ten? Hard it seemed - whilst trying to get two children to breathe for three second spells in between threatening to turn the TV off if they didn't do the exercises and politely telling Erin I couldn't read a story at the same time!
In between this all I was told about the 2 weeks Tess and Zac spent in the hospital in Leicester during October when the approach into winter had brought down their health and meant time being spent finding their veins to put in a long line for Intravenous Antibiotics so they could undergo different treatment to build up their health. One of Ellie and Luke have to stay with hem throughout this period, leaving Erin pining for her siblings at home.
It was a fantastic weekend - which was also tiring but a great experience. I gained an insight into the impact suffering with CF has on more than just the sufferers life and what the treatments do. (I also learnt I am not cut out for parenting, so just as well it wasn't something I've ever wanted!) But I have a greater understanding of the important work CFT are doing and how it can impact on the lives on CF sufferers. That said we had a weekend with no problems - and the kids were well behaved apparently! Ellie and Luke can be up several times through the night if Tess and Zac are unwell and can't breath comfortably and cough a lot. It's a sad thought that currently Tess and Zac have a life expectancy to 38 - not much older than I am already. Whilst lung transplants are possible, it's reliant on the right match from a donor, and that's easier than it sounds.
Huge thanks to Luke, Ellie, Tess, Erin and Zac for allowing me to spend the weekend with them living through what is their daily routine - it certainly will help as i aim to raise £10,000 to support Cystic Fibrosis Trust's work in supporting them.
Exhausted - Zac and Erin snooze on me Sunday afternoon while Tess sits on my feet to read!
With Ellie, Luke, Tess, Erin & Zac
Erin shows me her Journey of Life from school (and yes I have a child on my lap!)
Ellie pats Zac as part of his morning Physio
Ellie works full time as a Deacon with the Methodist Church whilst Luke is a house husband. That said, Luke also runs an U16 football club called Loughborough Emmanuel, which takes some time during the week and is his chance for some time away from the house. Between them they cover the early morning Physio and evening sessions, with meals in between and the usual household chores.
After a lot of charging round Saturday afternoon, and being almost beaten up by three children, it's tea time. Then follows more medicine and Physio - Tess being removed to the hallway for not doing her's properly because the TV is a distraction. Despite the importance to her health, Tess often loses interest in the exercise. Zac screams during his patting - trying to escape but Ellie persists. Erin just asks to be read a story by me in between it all!
Tess also does some reading and her voice has become much more raspy by this time - it sounds painful but Tess doesn't seem bothered - and she's an advance reader for a 6 year old soaking it all in.
Sunday morning and at 7.10am I am invaded with a demand from the three of them to get up. Whereas usually I'd debate this and get up in due course there wasn't that option - it was a case of get up now! In a state of shock we had breakfast before the morning physio - Nebuliser first for Tess then we had a game of blow football instead of the routine of 10 reps etc. I joined in this, as did Erin and Ellie (Luke was still snoring!) - and I realised how hard the blowing can be for a 15 minute intense period - and I'm not unfit either. The challenge for CF sufferers therefore sank in a bit more. As well as blow football we blew bubbles in jugs - which Zac enjoyed and seemed less frustrating than being patted for 15 minutes
Trying to play blow football whilst giving a piggy back! Tess is the opposition
The result of blowing bubbles - Zac is mightily impressed!
Church next - and we had 40 minutes child free time as they went to Sunday school and Ellie and I stayed in for the service (which was with the then President of the Methodist Conference, Alison Tomlin). I also had the chance to share with some of those there what I was doing to fund raise for CFT and gain more support - albeit I was briefly deemed Uncle Lucas!
Sunday afternoon showed how the time can take over and Ellie forgot that Tess was supposed to have been at a party - but by the time it was remembered it was too late. Instead, I ended up with Zac and Erin laid on me fast sleep on the sofa with Tess reading sat on my feet! I took the chance to doze off myself briefly! I could also hear how Zack's breathing sounds much more raspy as he slept - something I'd only experience it suffering a chest infection or flu virus. This was normal for Zac and is unlikely to ever really improve - unless CFT's research finds further medicines to aid this.
Having dinner at the Church with Ellie, Tess, Erin & Zac