Third time lucky

This post was started a couple of weeks ago now but I've been so busy with uni it hasn't been finished until now!

What a week its been....

On Tuesday, I spoke to a lovely journalist who is writing my piece for the Guardian newspaper (won't be in for a few weeks but will let you know when it is). We talked for ages and discussed all aspects of my life with CF and life on the list, she was so easy to talk to and after reading a copy of the article I am really pleased it. I also did a interview with local radio last week about transplant etc which went down really well and seems to have caused a lot of people to sign up which again is fantastic and gives me hope that the message is getting out to the public.

On Wednesday night I had started my NG feeding as usual and was laying in bed watching tv, while my mum was sorting out some medication in the other room. Suddenly my mobile started to ring with a number I didnt recognise....it was Harefield my transplant hospital. It was completely surreal, after talking for the last two weeks about waiting so desperately for a call I was getting one! The co-ordinator asked how I was and then said they had a potential offer of lungs for me. I was to get up to the hospital as quickly and safely as possible. My mum came in while I was talking and saw me grinning like a cheshire cat and nodding to confirm who it was.

I got dressed quickly but kept having to sit down as I was very breathless from exersion and nerves- the only sign that I was slightly nervous, otherwise I was just so excited and calm.

After my first call, I knew to dress in layers and take a cardigan for the chillyness of the car, i took my ipod to listen to on the way there while my mum grabbed some clothes and my medications that cant be packed in advance. At 12am we were off, the journey there was very quiet and we were in our own little worlds. It is lovely to drive so late at night, the dark blue sky, stars and twinkly lights are very calming. All the way there I kept reminding myself that this was probably a false alarm, even though deep down I felt it wouldnt be. I said a little thank you to the amazing family who had made such a brave decision when they were having the worst night of their lives.
When we arrived at Harefield my coordinator told me that they retrival team had gone to the donors hospital to check the lungs and that we should hear in a couple of hours. The next hour or so was filled with tests. I had bit of a nightmare having my blood taken which as regular readers know is a big stress for me. I have been severely needle phobic after a bad experience as a child and while I am 100 times better than I used to be I still get quite stressed if things are not going well.

First of all they were trying to get a canula in (so they have access when you are under anesthetic) but after a lot of trying it was a no go. So then the dr focused on trying to take some blood which needs to be tested to check for infection etc. Between the canula and blood tests it must have been 20 odd attempts and i was getting pretty upset. In the end they got the blood they needed and agreed they would try a canula later if we got the go ahead.
After that I had weight, height, loads of questions to answer, was examined, xrayed and even signed the consent forms for if the op went ahead. I kept trying to stop myself getting to hopeful that this may be my time but it is very difficult. You start to plan ahead, thinking "if it goes ahead I could be home for xmas, I'll be able to do this and that..." a whole world opens up in front of you, and all the dreams you have harboured seem possible. At 3am my coordinator told me that the donor lungs had been damaged and my transplant wouldnt be going ahead. I expected it but it was gutting, just like that everything that seemed possible 2 minutes ago was snatched away from me, and goes back to being just a dream.

We got home and I went to bed but couldnt sleep very well. I felt, numb, exhausted and angry. I never thought I would feel angry but I certainly did this time, not at anyone or anything just from pure frustration and disappointment. I kept reminding myself of the donor family to get some perspectiveand praying that they felt some peace in their grief, their pain was much more than mine. I am so grateful they decided to donate even though it couldnt happen.

I spent the next week or so absolutely exhausted, I had trouble sleeping and kept thinkng I heard the phone ringing. In all though, I think the aftermath has been less than my first call. I was probably physically harder hit this time but mentally I picked myself up pretty well and although it still hurts that it didnt go ahead I'm hoping that one day it will.
I also had an appointment at my CF hospital the next day which obviously meant I was more exhausted but am pleased to say that all the tests etc were good or stable so I am very very thankful for that.
It was 18 months in between calls for me, and I really hope it wont be that long again. As everyone keeps telling me fingers crossed for third time lucky!
x

BBC Breakfast

Second post in a week, how good am I?

Well as blogged last week I was asked to go onto BBC Breakfast last Thursday to talk about life waiting for transplant. Nervous was not the word, I get so scared about doing things like this (blog readers will know I get quite shy)and I really had to push myself to agree to do it. I am SO glad I did.

I got as much as I could done the evening before to save time in the morning. There wasn't much time to get too nervous and I had lots of support from friends and twitter followers which made a huge difference! After a little sleep I had to get up at 4am to do all my treatment before the car came for me at six. At 6am I was picked up (by a silver mercades no less!) and taken to BBC Television Center. Everyone at Breakfast were really friendly, kind and welcoming. They put me at my ease as soon as I arrived and talked me through what would be happening. The floor manager was very considerate and had it all arranged to get me into the studio and onto the sofa very early so that I wouldn't have to rush and get out of breath, which again made me feel less nervous. It was very surreal to go and sit in the actual studio you're so used to seeing on the TV! Then it was interview time and amazingly I managed to calm down enough to a fairly good interview. It really helps that I am passionate about this subject and in trying to get my message over to others. In my opinion if I made one person think about organ donation or sign up to the register then I am very happy :)
I've had lots of positive feedback on the interview and despite my nerves had a fantastic time! After the interview I was talking to Chris Hollins, BBC Breakfast's sports presenter and Strictly Come Dancing contestant. We were chatting about Strictly amongst other things, and I was telling him how I loved the show and had voted for him the week before (he didnt believe me but it is true!). Out of the blue he invited me and mum to go and watch his training session and I jumped at the chance! I had to go and film another short piece for the BBC news at one and then met Chris back in the green room.
He was such a sweetheart and really went out of his way to make it a nice day for us. He took us on a tour of the BBC (we saw Harry hill in the corridor) and round the Strictly set!
After that we hung around the canteen while Chris was in a meeting and then off we went to Battersea to watch training. It was amazing to see it all come together and Chris, his dance partner Ola, and other dance experts from the show made us feel so welcome and included the whole time.
We stayed for over 2 hours and chris worked so hard! I couldnt believe the dedication there. Im on a campaign to get everyone to VOTE CHRIS!
When I got home I was very tired and actually lost my voice the next day, but it was so completely worth it. Although it is very hard to deal with CF/transplant sometimes, the people I have met because of my condition are a real positive in a bad situation. When I think of all the people I have met as a result of my health I feel very honoured as so many of them are genuinly lovely, caring, wonderful people.
It may seem silly to some people but I felt so happy and revitalised from being out of the house having a bit of a treat for a few hours. It was nice to just be me, not a sick person but just me, to be able to have a laugh and relax. When you feel so ill most of the time and are so restricted, it is very easy to turn down opportunities and fall into a routine of treatment and illness. Having this experience has given some lightness to the gloom of humdrum that I have been experiencing lately without even realising it. It makes me realise that time out is very important to mental wellbeing and in turn physical health. I intend to take all the future opportunites I can possibly manage ;)
I also had a powerful feeling just after my interview. I thought that while I am well enough and able to speak out about my life and get the message of organ donation out to people, I will bloody do it! Talking frankly and honestly about life on the list gives people an insight into a world they do not know. I dont know if any of the awareness raising I do will help but while the message is being spread it could be helping someone, any one of the 8000 people waiting for a transplant. I am determined to do all I can to get people signing that list.

Anyway I have rambled long enough! I'm hoping to get a video of the interview up on here at some point soon. A technically mined person is working on getting the clip for me :)
Also have an interview with The Guardian on monday, its all go here!
xxx

Welcome new followers!

I have been getting loads of tweets on twitter at the moment and many new followers on my blog so thought I would seize the opportunity to say hello and let you learn a bit about me!
First port of call would be here my very first blog post that tells you all about me.
Of course that was 2 years ago now so things have changed a bit so I'll give you an update! Sadly the main thing in my life, needing a transplant hasn't changed and I (and so many others) are very much in need. I have been waiting for 2 years and 2 months for my double lung transplant now and things are a real struggle for me. I cant begin to explain how much it effects my life but it does in every aspect. I get desperately out of breath, use oxygen 24/7 and a wheelchair when i go out. I need assistance washing my hair, walking about, getting dressed and thats just the tip of the iceburg. Almost every normal task for any other 22year old is extremely difficult for me and my life is virtually on hold, I have no independance and all the dreams and energy pent up inside me have to remain there, for now. My life could be changed unrecognisably by a transplant I would be a fit heathly 22 year old again, able to plan a future that at the moment is not very certain. At my transplant assessment (April 06) I was given 2 years life expectancy without a transplant....im now living on borrowed time.
I miss everything that my situation has taken away from me, mainly my trips to the theatre (my passion) and being able to just be who I want to be! But I am also incredibly lucky to still be here fighting on! I am determined to do all I can to raise awareness of organ donation for myself and others.
Please consider signing the donor register to help others live.
Here!
Expect more updates soon, and thank you so much for reading! Hope you'll enjoy future posts. x
Please feel free to ask any questions and leave me comments, lovely to have you on board.

PS I will be on BBC 1 talking about organ doation tommorow! Eek! nervous!