In September I did an interview for cosmopolitan magazine about growing up and getting on with day to day life with my illness, I'd been in contact with the journalist on and off for a few months but had no date of when the article would be published and finally I got an email yesterday from cosmopolitan asking when I'd be free for a photo shoot and that they want to use my story in the May issue - am very excited about this, so I contacted the journalist and she is going to call me in a day or two to have a read through of the article and check that I am satisfied with the finished product then it is all systems go.

Today I was reading a post on the CF adults forum about an event called LIV being held by Thierry Henry at the Dorchester, London and it is set up to raise money to help find a cure for CF, Elton John, Matt Lucas and Jimmy Carr will be performing and due to Thierry's football he can not host the event so David Beckham is standing in for him, it is sponsored by emirates and nokia and is aiming to raise 1 million pound plus! this will be amazing if they could. I was approached my my CF nurse last September about doing a short film about my CF as they wanted someone with oxygen on but at that time I had just been put on oxygen 24 hours a day and was still getting use to the idea of needing it so I declined, but thinking about it now if I was approached tomorrow I think I'd say yes as I am a lot more confident with my oxygen now then I was back then and I think I have adjusted to it pretty well, that's not to say I don't throw a wobbly now and again because I do, I had one on Sunday when my parents took me out for a coffee but hey you can't be confident all the time can you?
click here for more information on this event - http://www.give2liv.com/

My Wonderful friend Sammy-Jo came to visit me today with her fiance Lyndon, It's always nice to see people and have a good chat about whats been happening outside in the real world, she came and wheeled me to the bathroom so I could have a lovely hot bath and we chatted whilst I was bathing, she's so sweet she washed the bath before we ran the water (as it's a communal bath) and she washed it afterwards for me, sometimes I feel so useless just sitting and watching people do things for me but I simply don't have the energy to do these tasks anymore. When we got back from the bathroom I connected my oxygen to the green lead which i thought was my oxygen (I have lots of green wires around my room you see, attached to various things such as the BREAS , oxygen, nebuliser, and one which I found out this evening is not actually attached to anything! half an hour later I was feeling rather peculiar my heart started to feel racy and i felt shaky, so I did my sugar levels - fine, then I checked my oxygen saturation's and to my shock they were 61% so I took my oxygen leads out from my nose and popped it in my mouth and nothing was coming out, so I went into panic mode, shouting 'No oxygen is coming out, connect me, connect me, I'm going to pass out' Sammy-Jo was panicking too as was Lyndon and we connected.. phew! saturation's then came up to 93% so I asked Sammy-Jo if I went blue and she said she thought I had, so.. I had actually connected myself to the nebuliser.. silly me.. It was rather scary.

It is Sammy-Jo's 21st birthday party on Saturday so am hoping to make it home in time, but I am not going to build my hopes up just yet though as this was the plan last week wasn't it?

It's Saturday and I am still in hospital so didn't manage to escape as planned.

On Thursday the doc's decided to take another blood gas and it came back extremely high so it has been decided that I need to use the BREAS from now on during sleep, so I need to stay in for a few more days until I get use to the settings and how it feels before I can be sent home on it. At the moment I am having some difficulty with it, on Thursday night i was sick because the amount of air going through it made my stomach full of air, Friday i just couldn't settle on it and last night it didn't feel like there was enough pressure going through it and I felt I took more of a deep breath without it so I had to take it off. It's another thing to add in with the countless things I already do but if it helps me to remain 'stable' then I am happy - just hope I get use to it fairly soon.

I've had a really good couple of days, on Friday the physio's took me on a little trip to south Kensington to a cupcake shop and I had a case of eye's bigger then my belly syndrome and brought three but when it came down to eating one cupcake I couldn't eat the whole thing let alone manage three!! but all I can say is they were goooood! It felt really strange going out, the streets were really busy with people rushing from place to place, road works going on just general day to day stuff really but because I haven't been out of the hospital in three weeks so it felt really rather odd it took me a while to get used to this but after about 15 minutes in the fresh air it felt a little bit more normal.

Saturday J's mum and husband came to visit me and so did J which was lovely as I thought he was busy all day - we went out to the Kings road to pizza express their treat which was lovely of them, we chatted around the table about various things but the 'opt out' topic was the main source of conversation (not suprising really is it?) and we shared our views on it and feelings towards it. Afterwards J stayed for a little bit longer before heading out to meet some of his uni friends.

On Monday my friend Jenny came to see me, we had made plans to go to the cinema to see no country for old men - the showing was for 3.15 and I had asked the porter for oxygen to be sorted at 11 but it got to 3.30 and after various calls through-out the day still no oxygen so I missed the showing and they said there was no oxygen available! why didn't they tell me this at 11 - I was so annoyed that they didn't inform me sooner, but I spoke to my physio and 15 minutes later she appeared with a small oxygen tank - yey! we'd already missed the film but that didn't mean we couldn't go out, so we took a stroll to south Kensington and then got a taxi to pizza express on Fulham road (I promise I am not a pizza express addict - well only for this weekend) we had lovely food and drinks and a really good chat - I had such a wonderful time.Today the Dr's have spoken about the possibility of going home on Friday so fingers crossed, were just looking at ways which may keep me there for abit longer.

I'm feeling a little bit better about things today, I saw my transplant co-ordinater this morning and she was lovely and answered all of the many questions I had to ask and which no one else had the answer to, my mind feels more settled which is great.

The last few days have been quite tough for me to say the least, Saturday was a awful day and felt as though it was never going to end - I woke up and found it extremely difficult to breath so i informed the nurse who then told the doctors who then came to see me, they switched my antibiotics around (again) and decided that because my oxygen saturation's were low they would need to do a blood gas on me to check my carbon dioxide levels - the test showed that my blood gases weren't looking to hot and they were higher then the doctors like, the problem is that due to low oxygen saturation's you can get high co2 retention which is obviously a problem. A common sign to this happening is bad headaches in the mornings and feeling quite lethargic.
I didn't have any headaches but did feel as though I wanted to sleep all day long so the doctor then suggested I try a non-invasive ventilation machine called the BREAS which is a machine which allows the clinician to adjust ventilation requirement digitally, whilst providing continuous positive airway pressure which will get rid of the co2 waste for me which at the moment my body in unable to do for itself. The machine comes with a mouth piece so I was told to use it for a few hours a day to get friendly with it and possibly sleep with it in a few days time as that was when the co2 problems are likely to take place as you take a shallower breath during sleep. It took a while to get used to the machine breathing for me but once you relax it is actually quite nice and takes alot of the strain off the lung muscles which are working overly hard at the moment. At first I was not too keen on this idea as I felt like it was another step towards my decline but after alot of thinking and crying I decided that these are tools which will allow me to feel more energetic and make life a little better whilst waiting for transplant and make things easier for me and less tiring.

I read a quote last night which I thought was great..
''Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, I will try again tomorrow'' - may tomorrow be more bright.

I am now officially on the transplant list!!

I've been feeling quite low the last week or so, I don't know why I am feeling like this - maybe I'm a little taken back by meeting the transplant consultant, maybe it's because Thursday is approaching and I don't know what is going to happen after then. I just feel as though my normal happy, bubbly personality has been taken away and I'm just left feeling tired, perhaps I am emotionally drained right now? The Dr's and physio's have suggested that I speak to someone who doesn't know me to get thoughts and feelings off my chest which seems like a good idea but I just hope it's not one of those 'and how do you feel about that?' talks. There is a certain thing that keeps running through my head and it is the call, what if i get it? what if I don't? am I scared of the call yes! am I scared of not getting the call? yes.. but what am I more scared of? and the truth is I am equally scared of both, I am scared of getting the call and saying goodbye to loved ones and not knowing if its the start of a new beginning or the end, I am scared of not getting the call and knowing that it is indeed the end - I have a fear of the un-known, I always have and always will, I hate not being in control of a situation and not knowing where I am at, which is a bad trate to have in a situation like this as you have to have faith in others and trust them with your life. Tomorrow or Friday I should hear whether I have been accepted onto the list or not and then I will know exactly where I stand - please keep everything crossed that I am accepted onto the list.

I've been in hospital for almost a week now and nothing has really changed, other then me feeling more productive chest wise. Last night I coughed up blood which wasn't very pleasant but is common in CF as it is a sign of infection - so today my lungs feel sore as though they have been hit a number of times, little things have become too much for me today - I walked to the bathroom and got severely out of breath so I asked the nurse to help me with somethings today such as a hair wash but she said the ward was very busy with the marsden patients being here she couldn't promise anything. So knowing I was in for a long wait I called up my mum and asked her to come and help me do somethings which she did. My mum is my life saver, she does a hell of alot for me and I know she does it because she wants to make things easier for me and she loves me but it must be such hard work for her having to care for me now and run a family home. We don't live close to the hospital either so it's not as if she could be here in 15 minutes its more of a 1 hr 2 hr job but she came and she got the basin from the nurse and set it up (felt like I was in her own salon) and she washed my hair, dried it and straightened it for me, she also filled up a bowl of warm water and soap so i could have a nice wash and feel nice and fresh. I am a very independent person and I find it really hard to ask people for help as I will always try but today I just couldn't seem to find the strength to do things.

I met with the transplant consultant today and we had a nice chat about things and I asked questions and he answered, he said he had looked at all of my results and he didn't see any reason why I could not be offered a place on the active transplant list and he needs to take all of my information off to harefield's meeting which will take place on Thursday and then I should expect a phone call telling me that I have a place then I need to decide if I want it or not. Obviously I do want the transplant if it should come up but there is more to it then getting a transplant, I think I will take about a week to reflect on things and just get a clear head rather then saying yes then jump every time my phone rings.

I haven't had the best couple of days. I've been feeling totally knackerd, am still having very high temperatures of 38.6 which is rather un-pleasant during the night and is not helped by the small over heated room I am in but I have seen the Dr's during the last few days and they keep saying the same thing that we are to continue with what we have been doing. I have been put on an oral antibiotic permanently now to try and cut down the amount of hospital admissions i have been having, this drug makes your water works go pink - so if i cry etc they will be pink tears which is rather radical ;) but pink is my favourite colour.

Today there has been a huge fire in the royal Marsden hospital (which is situated next door to my hospital) I went into my bathroom earlier and saw thick smoke and ash flying past and looked outside and the road was all taped off and there was around 20 police cars, fire engines, ambulances etc all parked down the road. Most of the patients from the Marsden have been evacuated and put in two of the wards here - luckily for them over Christmas time the Brompton shut down all of the wards apart from one so the Marsden have two empty wards to work on until needs be.