Sunday, 19 October 2014

Ticking things off my bucket list!

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!

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 trying them all Tim asked me what my favourites were and gave me a piece of each one to take home for free! I was so happy!

 Here is Tim telling us all about the cheese we are trying! 

 Me and my brother looking very happy with tummies full of cheese! 
The very generous huge amount of free cheese I was given to take home! 

I was in for another cheesy surprise when on holiday the following week; a super cute knitted cheeseboard of my own appeared out of nowhere on the table at the caravan! As many of you may know, since my 21st birthday '3 crazy daisy knitting ladies' have been on a knitting mission to keep me smiling by hiding little knitted things everywhere and anywhere over the last year! I have absolutely no clue who they are! My brother and sister know as they have helped out with hiding the knitted things and my brother was responsible for bringing the cheeseboard on holiday but no matter how many times I ask or guess they won't tell me who the knitters are!! It's so funny and mysterious! 
Anyway here is the knitted cheeseboard, complete with crackers, grapes and a knife, it's amazing! 
It came with 3 daises to show it was from the '3 crazy daisy knitting ladies' and even a little mouse! 

The second thing I have ticked off my bucket list is seeing Lady Gaga live in concert! I booked the tickets back in february and at the time I wondered if I would actually be well enough to make the concert but I took the chance as seeing her was a dream of mine. When I got put on the transplant list in september although I obviously wanted my transplant as soon as possible I also didn't want it to be before I saw gaga! My wish came true and on 15th october I was well enough and still pre-transplant so seeing Lady Gaga was a go ahead! I'm not usually a massive fan of dressing up but for Gaga there was no doubt I was going to dress up as crazy as I wanted because there isn't really going to be any other night in my life that it would be acceptable to do so! I decided to go for a mermaid theme like she wears for Venus, shells and big hair! I bought a kiddy tiara for £1 and glued shells and pearls all over it, I then searched pinterest for mermaid make-up ideas and spent over an hour doing my make-up and curling my hair! I bought a turquoise sequin dress a few weeks back to wear over the festive period but it turned out to be a perfect mermaidesque dress to complete my look! 
The whole show was fantastic! The set, her costumes and of course the music, I loved every minute of it! 

The next thing I have lined up on my bucket list is seeing Lily Allen in December, again though I have no idea if I'll get to see her or not because of when my call comes! 


Friday, 3 October 2014

Life on the transplant list

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' waiting time because it means nothing, some people wait a week other people wait 3years and for some the call never comes in time so when I tell you 'I don't know' I really don't know how long I will be on the waiting list for.

As the call can come at anytime I have to be prepared for it as after I receive the call and ambulance will be with me within 10-20 minutes to transport me all the way to Newcastle with its blue lights flashing! Once the lungs have been removed from the donor their is a very strict time limit in which they can be transplanted so I have to get to the hospital as quickly as possible! I am only allowed one person in the ambulance with me due to space and I have decided this will be my mum, therefore me and mum can never be further than 20 minutes apart so that we can be together in time for the ambulance arriving to take us! My dad is then going to have to drive up by himself which is going to be really hard but its just the way it has to be. My nurse has assured me that he should arrive in plenty of time to see me before I go to theatre for the transplant!

I will be in newcastle for 6-12 weeks when I get my transplant, up to the first 6 weeks will be spent in hospital and the 6 weeks after we are provided with a flat to stay in as I will have to go to clinic twice a week initially and have bronchoscopys ( a camera into my lungs to check they are okay) and biopsy (a small sample taken from the lungs to check for rejection) once a week. Obviously it would be far too difficult to travel that distance from leicester 3 times a week which is why they provide the flat!

Anyway, the hardest part so far has been packing a bag with everything I need for up to 12 weeks! I've basically bought new of everything (mainly pyjamas!) and a whole new set of toiletries because in the 10minutes between my call and transport their is no way I will have time to faff around packing all of that!

Here is a photo of all the stuff I've bought and packed in my transplant bag! 

Now my bag is packed, aside from constantly having my phone on loud and with plenty of charge there is nothing more I can do but wait and stay as healthy as possible.

In order to stay as healthy as possible I am on constant IV antibiotics to stop the bateria in my lungs reaching a level that is too high and dangerous to transplant, I am doing my NG feeding every night to maintain my weight at 46kg and hopefully even increase it and I am also going to the gym at the hospital with my physic twice a week to build muscle and stamina as the fitter and stronger you are pre-transplant the quicker recovery with less complications. It's a full time job looking after myself but one that is so important if I want those shiny new lungs!

Despite many peoples assumptions because of my situation at such a young age, I am not feeling down or sorry for myself, I am in fact in very high spirits and feeling more positive than ever. You see I have reached the worst I can health wise and so now the only way is up! People ask how I spend my days now I am not well enough to work, aside from all the above to look after myself, I am very lucky to have lots of fantastic friends to socialise with and a passion for art and textiles that I fuel into making various presents for friends and family and I am looking to set up an etsy shop to maybe sell some bits and bobs. Many may look at my life with pity but I look at it the opposite, I feel lucky to be in my situation and I wouldn't change it, I love my life and the people in it and now I am going to get a transplant I get to spend many more years than I thought of loving life with my loved ones.