Always Have Hope

So after months of waiting the weekend I was seeing Lily Allen live finally arrived! Me and one of my best friends Robyn bought tickets way back in August to  see her perform at Brixton o2 Academy, London, the last night of her tour and planned to spend the weekend in London with my sister who lives there. Although I was very excited for the weekend, I did have some anxiety about leaving home for 3 days and being apart from my mum in case I got my call when I was there! Robyn and my sister Katy are incredible at looking after me though and I needn't have worried! We decided to travel to and from London by train and as I was taking my wheelchair I used my disability railcard and got a disabled seat in which to sit. The staff at the railway station were superb, as soon as we got onto the platform we were approached by the conductor who asked us which train we were getting so they were prepared to put the ramp out for us to get onto the train! We got on the train hassle free and then ...

Life at home has changed substantially with the departure of my younger brother for his Austrian adventure working as a chalet boy in the alps for the winter season. He left on November 28th and won't return until April next year! 5 whole months! In anticipation of his departure we decided to celebrate christmas early as a family the weekend of the 22th November. My sister and her boyfriend came up from London to stay for the weekend so there was the 6 of us celebrating christmas on the Saturday and boxing day on the Sunday! It was agreed we would exchange presents with my brother but leave the rest until 'real' christmas! Christmas of course would not be complete without a christmas tree so me and dad, slightly earlier than usual, went on our annual trip to B&Q to pick the perfect tree! This year was we were rather quick at picking, we only got 5 trees out their net and spent an hour deliberating before we agreed on a 7 foot Norwegian Fir specimen! The lady on the til...

2 months and 11 days after being placed on the active waiting list for a double lung transplant, yesterday, Thursday 20th November 2014 at 10.15am I received my first call for transplant. I was in bed fast asleep when my phone rang, I woke up to see it was an unknown number but I wasn't phased due to the fact bupa who deliver my IV antibiotics had rang me at 9am also on an unknown number to tell me my delivery was going to be later than predicted so when I received this second call from an unknown number I just presumed it was bupa again to tell me they were almost at my house with my IVs. How wrong I was! As soon as I answered and heard the Geordie accent of the transplant coordinator I knew it was Newcastle hospital. As I realised it was Newcastle I still didn't think it was my call as the questions she was asking me seemed like it was just a check up phone call to see how I was doing. After I'd answered all her questions she then said 'right well, I think we have a p...

The months March to November are better known to me as caravanning season, my favourite season! We have our small caravan on a seasonal pitch at my favourite place in the world, a campsite on the north west coast of Anglesey, Wales. Our caravan overlooks the sea and the campsite has its own private beach, it's paradise. Through out the season me and my mum go to the caravan as often as we can with my dad and brother joining us at weekends and in the school holidays. Occasionally my sister and her boyfriend get time off from their jobs in London and also join us and the 6 of us squeeze into the caravan and a tent in the awning, it's a good job we all get on well as it's pretty cosy to say the least! I love it though, the minimalistic side of caravanning, me and my mum often joke about how self contained it is and why do we bother to have a big house when we can happily live in a caravan half the size of the lounge! This season has been the best one yet I think, we have ...

So I've been lucky enough to tick 2 things off my bucket list in the last few weeks... Firstly I was invited to the Melton Mowbray Cheeseboard shop for a morning of cheese tasting after I made a plea on my local radio station during one of my interviews about CF awareness, that I was desperate to find somewhere that I could do cheese tasting! After the show, Ben the presenter was contacted by Tim at the Cheeseboard offering me to a morning of cheese heaven! Ben had the idea to record the whole experience and air it on the radio the following week, it turned out to be a fantastic idea, everyone who listened thought it was not only very informative but very funny too! Here is a link to the interview if you want to listen!  http://www.bbc.co.uk/programmes/p0276jyx I got to try a huge range of different cheeses, Stilton, Cheddar, Red leicester, Old Amsterdam, Gouda with cumin, White Stilton with mango and ginger and lots lots more that I can't remember the names of! After try...

I've been on the list for almost a month now and am finally getting to grips with the implications of that and the reality! Everything has to be well planned out now and making plans into the future is more risky because I just don't know when my phone is going to ring. People it seems aren't very well educated on how organ donation and transplantation works. There is absolutely no way of knowing when I will get my call to say they have a matching pair of lungs so therefore no, I do not know how long I will be waiting for. People seem to forget that the organs come from a donor who has died and as we all know, predicting death is impossible non the more so predicting the death of someone who is a suitable donor for me. Unfortunately, there is not a factory that makes lungs as they are required, everyone seems used to living in a world where everything is accessible and available instantly, alas, lungs are not. There is no point either in asking me for an 'average' w...

As many of you will know I was referred for assessment for a double lung transplant in July 2013. As part of the referral I had to have numerous tests to check my suitability, these tests were carried out at my CF centre, Glenfield Hospital in Leicester. The tests carried out were as follows: Chest x-ray Echocardiagram (an ultrasound of the heart) Ultrasound of my liver (to check my liver is functioning with minimum damage from CF) 24 hour urine collection (to check Kidney function) Bone density scan (to check for osteoporosis that can be worsened by post transplant drugs) Blood tests (to know as much as possible about every level possible to be tested!) Lung function (to check my lungs are bad enough to require transplant) Blood gases (blood taken from the artery to test oxygen levels) 6 minute walk test (How far I can walk in 6 minutes and my oxygen levels while I do so) The results from these tests were then sent to my transplant centre of choice alon...