Waiting for a fairytale.

Back in.

2008-04-08T04:39:00.000-07:00

Over the last week I haven't really done much except watch TV, surf the net for birthday presents for my Brother's 16th and sleep due to not feeling too great.

On Thursday Tracey my home care nurse came to my house to take my bloods, get a sputum sample and just to check how I am getting on at home. I said to her I was feeling more productive and getting more out of breath then usual so I thought I had an infection coming on and she agreed it sounded that way, so she booked me a bed on Foulis ward for Monday.

Friday night my friends Connie, Sammy-Jo and Jenny came over for a girlie night, we just chatted about random things and what was happening in their lives, it was a really fun evening.

Saturday I was feeling really fed up with my situation and didn't really feel too well and when Sunday came I felt awful. It took me quite a long time to get dressed - I needed to rest after the simple things and I was really struggling. So I decided to call up the Brompton and they admitted me on Sunday early evening, I've started IV antibiotics and will hopefully be on the mend soon. At the moment I am so tired, all i want to do is nap.

It's ward round tomorrow so we'll see what they say!

One of the best shopping spree's ever!.

2008-03-30T06:52:00.000-07:00

Yesterday was by far the best shopping spree I've had in a long time. All week it had been planned that if I felt well enough to do so my friend Natalie, her boyfriend Scott, My brother Nathan and I would all go toBluewater for a day of shopping and get some dinner at Ed's diner. Ed's diner is the best place to eat fast food - well we seem to think so. They have mini jukebox on your table so you can pay 20p and flick through some old tunes, chose one and the entire diner will hear you chosen song, it's fab.

I woke up at 9 o'clock and Nat was picking me up at half one, which gave me plenty of time to do what I needed to do and give me sometime to spare, or so I thought. It got to 12.30 and I received a text message from Nat saying she was 5 minutes away.. shock horror, I was still sitting on my bed in my pj's and Nathan hadn't even had a shower. Turns out I am actually losing my mind and I wanted to meet at 12.30.. and so the rush began.

Once all ready with my o2 and wheelchair in the car we were ready to leave. It took us just over an hour to get to Bluewater and when we arrived we did loads and loads of shopping.

I was looking for the perfect fitting pair of jeans which is a mission in itself and I really wasn't looking forward to trying them on as I do get quite tired getting dressed these days but Nat was the best and helped me put on the jeans and take them off.

I must say Bluewater really have covered everything for disabled access, the changing room for disabled customers is huge! I found some navy jeans in Topshop and some tops and then it was time to pay, the Que was huge so we asked the shop assistant if we could jump the line due to oxygen not lasting very long and I had a long day of shopping planned. The assistant was very helpful and was happy to let us in but the people in the Que were not so happy. After my Topshop spree we decided it was time to eat and headed up stairs for our long waited Ed's, we were shown to a booth and handed out menus but we didn't need to look as we all knew what we wanted.

I had a hot dog with mustard and so did Nathan, Nat and Scott had a burger. We all shared cheesy fries and we all had to have a milkshake - they are the best milkshakes in the world. I had a mint chocolate one, Nat had a chocolate and coffee and Scott had a peanut butter and banana one. Needless to say we were all stuffed and so the shopping continued.

In the end I brought four tops, two pairs of jeans, some sparkly pumps, a scarf, and some make-up. Lets just say my bank balance is not thanking me today, but hey a girl has got to do what a girl has to do, eh?!

We got home around 9 and we were all so tired. Nat and Scott stayed for a cup of tea then they went home. I did my medication then it was off to bed.

I had a wonderful day with Nat, Nathan and Scott.

It's tough being a model.

2008-03-27T11:33:00.000-07:00

Tuesday I had a hospital appointment at the Brompton as my IV antibiotics finished on the Monday so I needed to have some blood done and see the Dr and then see what our next plan of action was going to be. My weight has gone up in two weeks - I have gone from 41.9kg to 43.6kg which is brilliant, so am very pleased about that. The Dr spoke to Professor about what she wanted to do for me chest wise and it was suggested I stay on one antibiotic to keep everything stable to which I agreed. So I am now on one antibiotic rather then the two that I was on before and I will return in two weeks to review my situation again. I also had an appointment with the ear, nose and throat specialist to check there's nothing unusual happening in those areas but luckily those were all fine and the Dr said he did not need to see me again which was good to hear.

Today was my photo shoot for Cosmopolitan magazine. When I woke this morning I felt really nervous, mainly about the clothes (no I am not that vein) but I have problems with jeans fitting so I was really worried about looking too skinny. I had been emailing Joan the picture editor for many months now so when she emailed me yesterday we arranged for her to come to my house for one. She arrived and shortly afterwards a photographer, photography assistant, stylist and hair/make-up artist arrived. My mum rallied around offering tea whilst everyone started setting up. My mum had to be back at work for two so J came around to help out and stay with me, they asked him if they could use him for test shots whilst I was having my hair and make-up done ,J hates having his photograph taken but he could hardly say no.
When I was finally ready the shoot began, there was a lot of 'can you tilt your head, move your arm, hold your hands.. beautiful, beautiful..' If I am honest I didn't feel too comfortable doing it, don't get me wrong I love being in front of the camera - if someones taking a photo I want to be in it, but I think it was more that when its a photo shoot all eyes are on you and it was that, that didn't suit me, I would prefer to be on the other end of the camera I think.

I did have a really good day and it was something so different to what I have ever done before. The article will be in the June issue which gets released in May, I get to read the article through tomorrow morning, I hope its good.

P.S - I've been at home for a month on Friday - YEY!!

2008-03-21T07:12:00.000-07:00

The last few days have been spent watching TV, catching up with other peoples blogs (check out my 'inspiring blogs' link on the right), and researching the big bang theory - it all started last week when J came over and we got chatting about the Earth and the Universe and he said about the big bang and the string theory and I realised I know little if not nothing about these as when taught physics in school I think I was more interested in chatting with my friends then actually listening to what Mr Dew was actually trying to teach me and I do in fact regret that because for one I can't remember what conversations me and my friends were having so they can't have been that interesting and two what he was teaching I would have remembered for my whole entire life, but I guess when your aged between 11 and 16 you don't really think about it too much so I am not going to dwell on that too much as I have enough time on my hands at the moment to do my own research so that has been what I've been doing. Firstly I looked up the string theory on Wikipedia but that seemed to be a lot of gobbledygook.. so I swapped my search to the big bang theory and that seemed to make a little more sense, so I know have a little more knowledge on the universe and how it all began. It's so interesting, phenomenal and overwhelming. I am still looking it up so I won't post any facts or anything as I'm no Einstein.

2008-03-19T11:11:00.000-07:00

I've been feeling a lot better the last few days, I've woken up with more 'get up and go' which is great, so yesterday I got dressed and my Mum, J and I went to Ikea to pick up some storage stuff for my bedroom - the annoying thing about my room at the moment is that I have so much medical equipment that it takes up so much of my room it's getting on my nerves, I want my room to look like a bedroom again not a hospital room (although my room is pink so that separates it from a hospital room). So J whizzed me around Ikea in my chair with little swerves here and there it was fun, although we kept having to wait for my Mum because she walks a lot slower then J. I brought a huge chest and a new TV table with a shelf for my DVD player, freeview box and Wii, and then another shelf which I will store my DVDs on. My Mum has already set up the storage box and it's filled with medication and were going to do the TV table a little later on.. (I say we, but really my mum will do it and I will point at where things need to go). Later on last night me and J watched some TV and I read his script on a film he's doing at uni that he wrote and will be directing and gave him my opinion on it (it is very good, he is very creative) then we went to sleep, it was lovely him to stay again as it's been a long time, we snuggled and fell asleep together.

Good times.

2008-03-16T02:56:00.000-07:00

I haven't been outside since Monday due to the weather being horrible and due to me not having much energy so I have spent most of the Week in my pyjamas at my house.

My Friend Sammy-Jo came to see me on Thursday evening which was great, we watched Hollyoaks and analysed all the crazy story lines they have going on at the moment and just chatted about anything and everything, Sam left and then J came over which was fantastic. J is at uni doing a BA Honours in film and video production so he brought over his Mac and showed me one of his films he'd been working on - it was brilliant! I'd love to put one on my blog but I'm not too sure if he would allow me to but I will work on that one, he'd also uploaded some footage he took from our holiday to Egypt in 2006 and showed me some of that. Seeing the footage of the Red sea made me want to go back, it really is gorgeous. Then we sat down to watch the TV series Terminator: The Sarah Connor Chronicles, the plot line is set after the events in 'Terminator 2' Sarah Connor and her son John, trying to stay under-the-radar from the government as they plot to destroy the computer network Skynet in hopes of preventing Armageddon (not really my thing) but J had been following this for a few weeks now and at first I was quite reluctant to watch it, but once it started I did quite enjoy it.

On Friday I just watched TV and snuggled in my bed, nothing exciting and on Saturday Sammy-Jo popped over for a bit and my other friend Connie came over to watch a DVD, we watched Planet terror, so all in all I've had a really good couple of evenings with my friends, may they continue.

I talk about my friends quite alot through out my blog so it's only fair I put a face to their name, so I have uploaded a photo of them, it's quite an old photo but I think it's a really nice one of us.

Jenny, Connie, Me, and Sammy-Jo.

2008-03-12T10:04:00.000-07:00

I've had a bit of a poo time on Sunday, I've been having high temperatures and am more productive in my chest and just feel like I don't have any energy, So I called up the Brompton and spoke to the Dr on call and arranged to go onto Lind ward (the day unit) on Monday to have bloods and x-ray done and then to see the doctor and begin IV antibiotics again, So on Monday off we went to the good old Brompton, arrived on Lind at 12 o'clock, went straight to bloods and x-ray and then waited to see the doctor who arrived at 4.30. There are currently no beds available on Foulis ward so I was sent home on IV antibiotics for 14 days and then we will see where I am at, I was told that if I deteriorate I will have to be admitted to my local hospital (which has actually been voted the worse in the country) then be transferred to Foulis when a bed becomes available.

Yesterday was quite bad as I was so tired, I coughed up pots of mucus, still spiking temperatures and was just drained but today I do feel a little better, I'm not as tired which is good. Hopefully the drugs are working and will get rid of this infection.

TGI Fridays.

2008-03-09T08:29:00.000-07:00

Last night I went for dinner and cocktails at TGI Fridays with my two friends Sammy-Jo and Jenny.

During the day time I had a raging temperature of 38.2 and my Sat's were dipping between 86-91% so I wasn't feeling too great but I had been really looking forward to the TGI cocktails for quite sometime now so decided I wasn't going to let that stop me having an evening out with the girls!. Sammy-Jo picked me up at 6.15 so we had plenty of time to load all the o2 in the car as well as the wheelchair. When we arrived at TGI's we were shown to our table and given our menu's - I decided on choosing the starters to have as my main as I know there is no way I'd eat a whole main meal these days so I chose corn on the cob, onion rings, and breaded Mozzarella dippers with a gorgeous cocktail which was named Strawberry Daiquiri, it is a frozen combination of smooth Cuban rum, sharp citrus juice, strawberry liqueur and strawberries and my gosh it was soooo nice! I had two, it was recommended by Sammy-Jo.

It was great to be out with Jenny and Sam as it's been so long since I last went out, we chatted loads and had a really good time. When it was time to leave that's when the drama started, we went to the car and I was going to switch to my emergency cylinder as the one I was currently using was on the red so was going to run out shortly, but when I turned it on the oxygen was leaking out of somewhere that it shouldn't have been.. oh dear, so it was a faulty cylinder (so much for emergency tank eh!?) at first I did become quite panicked as I knew if I were to run out of oxygen I'd be in trouble and who knows what would happen! in fact I don't even want to think about it as it terrifies me, but Sammy-Jo calmed me down and assured me we would get home in time and to call my Dad to let him know what was happening, which I did so when we got home he was waiting outside with a new cylinder and we didn't actually run out entirely so Sammy-Jo was right - and no she was not speeding ;) anyways drama aside I had a brilliant time out with my friends and I hope I can do it more often.

My Strawberry Daiquiri

2008-03-08T06:14:00.001-08:00

Being at home is great, but oh my gosh it is hard work! in hospital everything is to reach, but at home your constantly pottering around to get things as they have a specific place in your room, in hospital you get your bed made for you, at home you have to do it youself so it is tough but I think I'm doing ok, because I have the best mummy in the whole wide world who helps me with everything - I do feel quite bad on her sometimes though because she does an awful lot for me and I just sit and watch her do it and I want to help so much, I know she understands but I know that having me home is hard work and is a full time job really, she's constantly up and down the stairs fetching me things, she'll be muscle woman soon.. but at the moment she is super mum.

Since I got discharged from hospital Ive been taking it easy, I've been out a few times but no where exciting just to Ikea, Curry's, comet, topshop etc, a friend of mine came over on Wed night and we had a catch up. Yesterday I got my hair cut which was long over due - I last had it cut when it was the rugby final.. I think that was around October time but don't quote me on it, so when I went back yesterday my stylist John said he'd give me a cut which wasn't too much hard work as these days doing my hair takes up quite a lot of energy and I get all hot and bothered and annoyed, I've got a short bob type thing and it's chocolate.. My appointment was at 4 and three oxygen tanks later I had my new do.. will post pictures soon and in the evening time J came over and we snuggled was lovely, I miss doing things with him.

I'm home

2008-03-05T01:36:00.000-08:00

Yesterday morning the Dr's said I could finally go home. Wooohooo... *dances around the room in a jiggly fashion* this is great news but as I've been in hospital for such a long time it's also quite scary.

My Mum and my brother came to pick me up in the evening and off we went on our journey home. The journey home was full of conversation between us all - my brother said vodka was made from potato? this made me laugh, he swore it were true so i shall Google that in a moment or two. We were all hungry so we decided we would eat out as it was getting late, we decided on going to our local harvester as they serve different dishes so everyone would be happy. I had a prawn cocktail to start and an harvester combo for 2 for main (yes it was for two but i didn't eat enough for two.. I'm only small) and it was good!! I also had a little glass of wine which was nice.

It was really good to be out with my family, talk about normal things and just be me again. When back at the house my mum helped me unpack all of my things and then I settled into my warm, snugly bed and had the best nights sleep - although I did have a bizarre dream about J but I won't go into that.

I'm not sure how long I will be out of hospital for but everyday I spend at home I will be thankful for. I'm going to take it easy and take everyday as it comes. Tonight I have my friends coming over which shall be fun.

I'd also like to say thank you to everyone who sent me get well wishes, cards and gifts - your kindness was overwhelming and i am very lucky to have you all behind me whilst I go on this journey.

Me with a balloon i recieved from live life then give life.

Home for the weekend.

2008-03-03T06:54:00.000-08:00

I saw the Dr's on Wednesday and they were so pleased with my turn around they let me escape home for the weekend - yey!! so on Friday my mum came and picked me up and off we were on our way home, we did a little de-tour and nipped into asda to pick up some duck eggs which I have been craving for weeks now.

I've had such a wonderful time at home, spending it with all my family and being in my own room, surrounded by my own things & sleeping in my own bed - heaven!

Yesterday was great, My nan and aunt came over in the morning as they have not seen me in a few weeks so we all had a catch up, later on my mum, my brother and I played bowling on my Nintendo Wii (remember I got it for Christmas but have not had the chance to play?) it was great fun and not as tiring as I expected, although I have a wrestling game which does look somewhat energetic so I shall be giving that a miss. We had a lovely roast for dinner and then me and my brother watched stardust together, it is a brilliant film, I love romance and I do love a good fairytale so the combination is my perfect film.

I was actually suppose to go back to the hospital last night but I am now off IV antibiotics and I felt well enough to stay another night, so I called up the hospital and they said I could return this afternoon.

2008-02-27T08:25:00.000-08:00

Yesterday a friend of mine took the afternoon off work to take me out to do some much needed retail therapy, to begin with I felt slightly anxious about being out as the last time I actually went out was the 2ND February to go to a 21st party and that didn't go well.

We took 2 portable oxygen tanks with us to be on the safe side, i got in my chair and off we headed towards the kings road. Once out I felt more relaxed about things which made me feel so much better. We went into scribbler as they do the best cards and I picked up a mothers day one and we had a little giggle at the naughty ones, then onto accessorize (which has a huge step and the shop assistants aren't at all helpful) and looked at all the gorgeous sequined bags they have, then onto boots where I picked up some mascara, then it was on to the big shop... one of the reason's we went out, to go into Mac and spend lots of money on lots of new make-up, I got some new foundation and blusher which was quite expensive but hey a girls allowed to treat herself. I got my mum a box hat full of pink bath bombs and soaps from lush as a mother's day present as she loves everything in that shop, then we headed to Starbucks for a drink. I had a cappuccino and a blue berry swirl cheese cake which was rather yummy and Natalie had a lemon drizzle cupcake, we had a good chat about things and when we looked at the time it was 5 o'clock so we decided to head back to the hospital as Natalie's boyfriend Scott was meeting us and we were all going to get dinner together. I had fish and chips, we did a search on the net and in the whole of Chelsea there is only ONE chip shop!! I had a really lovely time out with Nat, I was shattered at the end of it - went to bed at 9.20.

My blueberry swirl cheese cake.

2008-02-23T05:24:00.001-08:00

I'd say I was the type of person who can pick themselves up when they feel down and make the best of a bad situation. If I'm feeling sad about anything I usually put my i-pod on and listen to something that will make me smile - Mcfly does the trick, but today is just one of those days where things feel a bit too much. Everyday in here is the same, the same faces, the same routine, everything is done by the clock it's all just very much the same every single day, it's like ground hog day in here. I miss my life, I miss being able to just nip to the shop to buy some make-up, I miss driving to my boyfriends for a cup of tea, I miss going to the cinema, going out for dinner, going out for drinks with the girls.. I miss being independent.

I look forward to the day when I can just walk out of the door, wind in my hair, smile on my face.. freedom.

2008-02-22T11:32:00.000-08:00

Since Friday things have definitely improved thanks to the new antibiotics I've been on and the amount of physio and exercise I have been doing, hard work has really paid off. My inflammation markers are now down to the 30's which is amazing and I have finally come off the breas in the day. The Dr's seem very pleased with me and I am pleased with myself. There is talk walking outside next week and possibly a night at home that weekend too!.

Friday 16th

2008-02-19T09:04:00.001-08:00

From the moment I woke up on Friday morning I was having trouble breathing, I had an awful pain going through my right lung, my whole chest felt tight, I couldn't speak whole sentences as I was too breathless and my secretions were too thick to bring up which meant clearing my chest was impossible. I had an x-ray done and it showed that my entire right lung was blocked with thick mucus, my inflammation markers had risen from 70's to 170, I was having high temperatures of 38.2, I felt awful. Every movement I made, every position I tried to get myself into felt so uncomfortable it was really frustrating.

Later in the afternoon the dr came around and said she was very worried about me and that I have been growing another bug aswell as the one I already grow and that she was putting me on some very powerful drugs to try and combat this infection as well as she could. She wrote me up for more antibiotics - both oral and IV, some more nebulisers to help to thin and losen the mucus, some fluids to rehydrate me and she told me that I may come to the point where I am needing to use my breas 24 hours a day from now on as I am very poorly. I asked if I was going to die and she said she didn't think so but she couldn't say for sure as she really didn't know. I know I shouldn't have asked because it really didn't make me feel better but I just thought I'd like to know.

Things didn't improve much through-out the day but the physios wrote me up for a strict schedule to help clear all the thick stuff plugging my chest - my day goes like this..

9.00 am - dnase nebuliser
9.45 am - salbutamol nebuliser
10.00 am - physio
11.00 am - antibiotic nebuliser
11.30 am - 1.00 pm rest on breas (not forgetting all the other medication i am on)
1.15 pm - salbutamol nebuliser
1.30 pm - physio
2.30 pm - 3.00 - rest on breas
3.15 pm - dnase nebuliser
4.00 pm - physio
4.30 - evening - rest on breas.

Valentines

2008-02-18T09:05:00.000-08:00

Valentines day - it's like marmite, you either love it or you hate it... and I LOVE IT!!

I'd been looking forward to Valentines day for days as I got to see my lovely man and spend sometime time with him. The plan was to get a pizza and a DVD, however in the day my lungs as usual decided to become rather uncooperative and be naughty as they do from time to time so I was not feeling too great, so I said to J that I probably won't be much conversation this night and would probably be spending most of the evening on the breas. I knew J didn't finish work until half seven so I thought I'd get in a quick session of physio and listen to my i-pod, so as I lay on my bed who should walk in with a beautiful rose in his hand? J! He'd left work early and was with me earlier than I had expected, he's so cute - he brought me a candle with hearts on it, a rose (see photo at top), a heart and crossbones keyring *quite punky*, Atonement on DVD, and he got me a really nice card - it's simple but gorgeous. We ate pizza and watched the film together and it was really nice to be in his company. When we usually settle down to watch a film together we don't usually watch the whole thing as we tend to talk but due to me not feeling so chatty we got to see the whole thing and I'm glad I did because Atonement is rather good.

2008-02-16T10:13:00.000-08:00

I'm not feeling very well at the moment so am not going to post a huge post tonight, but i wanted to post something that happened today which has made me very smiley.

My mum and dad came to see me today which really lifted my mood, it sounds silly but you don't know my family, we all live together in the same house yet we hardly ever encounter each other except at evening meals, this is because my parents work different hours to each other, my brothers a teenage boy so his world at the moment is eating, sleeping, girls, laptop, girls and sleeping, so as you can imagine not much conversation comes those lips and I.. well I am in here most of the time so I can't spend as much time with my family as I'd like to. So when they called me early this morning to say they were on there way I replied with a rather shocked 'what now?' So when they arrived it was very nice to see them. My mum brought me clean pyjama's up and helped me with everything I needed help with, then we all sat down - we chatted and laughed about things, had some lunch together (well i had some toast - but they brought up their own packed lunches). Whilst having physio mum and dad went out to the kings road (holding hands might I add - which is rather strange to hear as my dad is not the affectionate type) and when they came back my mum came back with some goodies from lush.. my mum looked really happy and we were all really happy and even more happier that I am doing OK today. It's funny how situations bring you all closer isn't it!? I love my family with every piece of my heart and seeing my mum and dad happy together today really cheered me up - they cheered me up.

Reminiscing

2008-02-09T03:07:00.000-08:00

I tend to think back to past events quite alot, I love photo's, I love talking about past memories and I love thinking about all the things I have done and experienced in my life so far, but recently I've been thinking about them alot more then usual - on down days memories can upset me up so much as when I think about all my friends going out without me it upsets me, i should be doing all the things they are doing, creating new memories with them like I use to be able to but after about 10 minutes the upset just turns into determination and I get hit with an adrenaline rush and it just makes me even more determine to be able to do that again and create new memories with them and all the other people in my life.

It's Valentine's day on Thursday and this is going to be somewhat different to last years, last year me and J went out for cocktails, then on to a restaurant for dinner and then to my house where I had candles and champagne waiting for us - this year I am in hospital and the plan is to watch a film and get a take-away so completely different but at least were spending it together.

2008-02-05T10:08:00.000-08:00

On Friday I got allowed to go home but the doctors said they were going to hold onto my bed until Monday just as a back up. So my mum came to pick me up Friday afternoon and off we went on our journey home, we decided that as a treat we'd stop off at our local Harvester restaurant for some dinner as we had a full oxygen tank and I was feeling pretty well. My mum dropped me off by the entrance and went to park the car, I managed to walk up the 4 stairs and into the restaurant without getting overly out of breath and we sat down and had a really nice meal together, then went home and i got settled into my room and snuggled into my lovely soft bed which i had missed very much.

On Saturday I had a rather eventful day - In the morning I wasn't feeling too well so when my mum did my physio my oxygen saturation's decided to drop to low 60's which was very bad and I turn't blue, which was rather worrying and through out the day they never really went any higher then 85% I spoke to the doctor's through-out the day and they asked whether I felt like my saturation's were that low and I said no as I didn't feel anymore out of breath then normal.. I was so wrong, It was also my best friend Sammy-Jo's 21st birthday that night and I was determined to go as all my friends would be there and she is a special friend to me so I wanted to be there for her. I had a bath and that seemed to be more of a struggle then imagined, when it came to getting dressed I couldn't do it as my chest just felt really tight, as if it had just closed in on me not allowing any air to pass in or out it was very scary, my mum helped me get dressed, pulling up my tights, helping me in my top, skirt etc whilst i used the BREAS most of the time as this was the only thing that was keeping my saturation's above 90% and opening my airways. when we arrived at the party J carried me to the door and I attempted to walk in, it was such a struggle and it took up a lot of energy and i felt awful. The party was good and the birthday girl looked gorgeous but i would have enjoyed it more if i could breathe, i felt really bad on the people who were engaging in conversation with me as I couldn't concentrate on anything they were saying as all i was thinking about was every breathe i took and how much I could not breathe. I then said to my mum i can't stay anymore i need to go to hospital and off we went, James carried me to the car and i still couldn't breathe - even with oxygen whacked up to 4 litres. We arrived at the hospital at 10.30 - the Dr saw us straight away, i had a Ventolin nebuliser to open my airways, put back on the BREAS, chest x-ray, blood gases and blood tests - the doctor said I had another infection as my infection markers where higher then when I left and that it was a good decision to come straight back. My saturation's still haven't really picked up and this is causing the doctors concern but I have faith in my CF team and I'm sure they will get me sorted and on the mend soon.

2008-01-29T09:23:00.000-08:00

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?

2008-01-26T08:25:00.000-08:00

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.

2008-01-23T08:42:00.000-08:00

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.

2008-01-15T08:08:00.000-08:00

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.

2008-01-11T11:26:00.000-08:00

I am now officially on the transplant list!!

2008-01-08T10:48:00.000-08:00

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.

2008-01-04T11:27:00.000-08:00

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.

2008-01-02T10:20:00.000-08:00

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.

Christmas time part-two

2007-12-31T08:14:00.001-08:00

I had made plans a few months ago to spend the weekend of the 28Th December with J's mum and her husband so we were all very happy that it was still going ahead, so oxygen had been delivered to their house on the Thursday and there was enough leading to get me around the whole house and we had emergency cylinders and portable cylinders so everything was in place. My mum helped me pack my suitcase - well i say helped me she packed the whole thing whilst i watched and pointed at various items i wanted to take with me. I took so much stuff I looked like I was going away for a very long time but everything I took I needed, I was picked up by Colin J's step dad- he loaded everything into the boot for me and off we went.
I had a little tickly cough when I woke that morning and it didn't feel like a CF cough so I brought some cough medicine and thought that would help. When we got to their house it was all very lovely, their house is always very tidy, nothing out of place and they had a nice new carpet fitted so it looked even more so. We had lots of tea, chatted loads, they played the Wii (i still have not much energy so haven't had the courage to play - I think I'm a little bit scared of not knowing how out of breath i will get but I need to give it ago sometime otherwise it'd be a big waste of money) and had dinner, by this time I felt a little poorly so I went upstairs for abit but I didn't come back downstairs as I was sick and feeling quite rotten by this time, so I just watched some TV and went to bed, the next morning was pretty much the same I woke up with absolutely no energy, felt awful, felt a little dizzy, drowsy and had this rather annoying cough, i had a high temperature of 38.3 and thought I'd feel abit better later on, but I didn't, so I made the decision to go home. Everyone was so lovely, they packed up my bags for me and helping me so much I couldn't have asked for anything more, I was quite scared as I'd never actually felt like this before and I asked J to carry me to the car and Annie to call my mum and ask her to call the hospital as I defiantly needed to come back in. Whilst in the car J held my hand and it was lovely to have his support but I realised how scary this all must be for him - yes he's seen me poorly before and in hospital but he's never seen me sick and needing constant help from someone else and this must have been quite a shock to him. We arrived back at my house and just swapped my things from one car to another and I kissed everyone and off we went to the hospital. Once I arrived it was half 7, I had an x-ray, bloods done and various other samples done and the decision was made (finally) to change my drugs and the Dr said it had a viral infection and a low sodium level and was dehydrated so I was connected to a sodium chloride drip for 48 hours to help me feel better. So two days on I am slowly feeling better but I feel so tired and just like I've been completely wiped out, but hopefully things will pick up in the new year.

I think this new years eve I will be asleep before midnight.

Have a a fabulous 2008.

Christmas time

2007-12-30T13:15:00.000-08:00

This is quite a long post so will do two installments.

On Friday 21st December I was discharged from hospital (with antibiotics), which I was delighted about as it meant I got to be home for Christmas and would be able to spend it with family and friends. When I got home I was going through my post (which is usually bills - mainly from topshop) and I had a wonderful totally unexpected surprise, a friend of mine had nominated me for a 'gift' from a charity the Chloe Janet Ball Trust, this was set up by a family who lost their daughter Chloe to Cf and wanted to help other CF sufferers have a lovely day out, the letter was beautifully written and they spoke of Chloe with such love and warmth, they gave a list of suggestions for what to spend the money on such as a weekend away, theatre tickets, a meal or if I like on bad days just spend it on lots of take-aways, on-line shopping - just spend it on myself. It was a wonderful surprise and I thank Emily for nominating me for this, I don't know what I will spend the money on yet but whatever I do I will do it in memory of Chloe and have a drink for her and her family.

Christmas did not run smoothly for me - Christmas eve was spent at the hospital as I felt quite ill and just plain rubbish so me and my mum decided to come up the hospital and see whether the Dr could swap my antibiotics around but unfortunately as Christmas in hospital's is rather manic (as I have found out) none of my samples were back so they could not see which drugs I was resistant and sensitive to so we came to the plan that i would take both an IV and an oral antibiotic and return on Thursday to see where we were at. I finally left the hospital at 8pm and one of my friends had organised a Christmas eve get together so I got my mum to drop me off there and pick me up afterwards. I only stayed for 2 hours as I was completely knackered. It was nice to see my friends but it also made me quite upset as they were all laughing, dancing and drinking and I couldn't do any of those things this year and probably won't next year either.

Christmas day I woke up and my brother jumped into my bed (mine is all snugly and soft so when in hospital he likes to sleep in it much to my disapproval). In the mornings it takes me quite a while to have a morning cough and wake up - I don't have any get up and go anymore, we went downstairs all opened up our presents, had breakfast and then played with everything we got.. I say played as if we are children but were not I am 22 years and my brother is 15 years but I got a Nintendo Wii this year (big smiley face) so when I am feeling well enough to play it for hours I shall be keeping fit and having fun all at the same time - perfect!. Towards the end of the day my chest was feeling very bad and even having a bath proved too much to bear so I just went to bed hopeing that boxing day would be better.

Boxing day arrived and every year all my dad's side of the family get together around my nan's house and we have a big Christmas dinner together which is absolutely delicious - in my opinion Nannies always make the best food. I was having a much better day the Christmas day with regards to my naughty chest so when I went back to the hospital on Thursday the Dr said to keep on with what I am doing and come back on the 2ND Jan to stop antibiotics.

Busy days

2007-12-22T05:29:00.001-08:00

Sorry for lack of postage, the last few days have been rather busy.

On Tuesday I did some more of my assessment and went out with Jean again and some of the other patients. We went around London to look at the various Christmas lights they had to offer, we went to Parliament square, Covent garden, Regent st, Oxford st, Carnaby st and some others - in Covent garden at 7 dials they had huge chandeliers hanging down they were gorgeous, the best lights I think - it was really lovely to get out and enjoy seeing the lights with other CF patients - something that rarely happens these days due to cross infection.

On Wednesday I went over to the Sydney street wing (the royal Brompton hospital is situated on two roads, Fulham road is more of a lung hospital where as Sydney street is more cardiac) to have an operation, I had my operation and was put to sleep for four hours, they gave my lungs a good clear out and when I woke I was talking about my exercise test and facebook which was funny. I was put out by anesthetic which is always a bit risky when you have problems with your lungs as this shuts down your entire body and causing the cilia to stop working, mine doesn't work too well anyways as my sectretions are rather thick so this can cause a chest infection and set you two steps back, so now I have a cold and another chest infection which is rather unfortunate as the plan on Friday was to come home off antibiotics but the good news is I have come home even if it is on antibiotics, I am due to go back to the hospital on Thursday to review my infection and see where we go from there.

Today I am just going to chill at home as I am rather tired, washing my hair took up a lot of energy this morning but I am going to have days like this and I don't want to complain too much as there is nothing I can do about this.

p.s - Assessment is all done!!

Much love over the Christmas period. xx

Highs and lows

2007-12-17T13:09:00.000-08:00

My life feels like it is all about CF and transplant at the moment and today it has really got me down, I am told to expect days when I am on a high and days when I am feeling really low but it's quite worrying as I am not even on the transplant list yet. Today is indeed a low day, I feel as though anything will set me off into a crying state, I was just speaking to my nan on the phone and I said I so desperately want my old life back but I know I can't have that and I need to learn to accept that but I'm finding it really hard.

Today I have done two assessment tests, a full lung function which involved me sitting in a big glass box and blowing into the machines and another blowing and inhaling a mixture of oxygen, helium, carbon monoxide and nitrogen, I also did an excerise test - this was a bleep test so I had to walk from cone to cone and keep in time with the bleep, I managed 130 metres on 2 litres of oxygen and was told to stop due to high heart rate and low saturation's - both of these tests I had been dreading but they weren't as bad as i had thought.

Weekend

2007-12-16T12:01:00.000-08:00

I have become some what addicted to sudoku! J lent me his Nintendo DS for brain training as my memory could be a little better ;) but I seem more interested in sudoku. I remember when all the hype was about and I really didn't understand it but now that I do I find myself browsing when shopping and saying such things as 'ooh look a sudoku puzzle book' something I never thought I would be saying! it has become part of my daily routine - wake up, have tea, physio, meds, 'must play sudoku and brain training' then I begin to get ready for the day ahead, can someone cure my addiction?

Friday afternoon I had an appointment with a dentist at the Royal Marsden hospital in Chelsea, this was part of my assessment and I am pleased to say that my mouth is medically fit - so that is another one ticked. When I arrived back from the Marsden my mum was in my room waiting to take me home for the weekend, but before we went home we took a minor detour and went shopping down the Kings road, we got some more Christmas presents and that is it, finally all of my Christmas shopping is done and I must say it has been rather expensive but I did most of it on the Internet (another addiction I have, topshop, me, card = bad!) my mum calls me everyday saying 'you have another parcel' and tomorrow will be no different. So when I got home from shopping it was late but I had enough time for a hot bath which was gorgeous and then I was snuggled up in my own bed, looking forward to a well deserved lie in. Saturday came and I did not get my lie in, my mum woke me at half 9 with a cup of tea and said Sunday's are for lie In's and so the day began, I went to superdrug to get odd beauty bits I needed, I walked around the whole shop and was very pleased with myself and decided that I deserved to treat myself to all those expensive things i brought which were not on the list ;) then we went to the cemetery to visit my sisters grave (it was her birthday on the 10Th and due to being in hospital I didn't get the opportunity to go) and again I walked to the grave and back to the car, then we went to a local shopping outlet to look for some things my brother needed. Whilst parking a man parked into the disabled bay next to us and clearly was not disabled and did not have a badge so my mum politely said to him 'these bays are for disabled people' well I shall not repeat his response to this but lets just say he did not move his car he just walked (quite well) to the sports shop - some people are so ignorant, don't they stop to think someone less abled then myself needs to park closer to the shops? it makes me so angry.

Sunday I woke up early as me, J, his mum and his step dad were going out for Sunday lunch. I was picked up at 1ish and we went to the harvester, it was very busy as people were having their Christmas meals and I was worried we might be seated up stairs but luckily we got a booth near by, I had a little glass of wine with my meal. It was really nice to be out with J's family as I don't get to see them often and when we do meet it's really good to have a catch up and hear about the things they have been up to. I am planning on staying at theirs on the 28Th Dec, but those with CF know never to plan things as your health changes from day to day so it makes planning things quite difficult but I have arranged oxygen to be delivered to theirs and if i do fall ill (which I am preying I won't) all i have to do is cancel it, but I am really looking forward to a nice break away and spending some time with J. After the meal I went back to J's and we watched Chelsea vs Arsenal and then we took some funny photo's of ourselves on his laptop (when he emails the pictures to me I'l be sure to put one up on here) anyways I think I have written too much and I think I might begin to ramble.. I've had a lovely weekend at home and I feel really good - it feels strange being back in the hospital now when I don't feel UN-well (well there's a first for everything isn't there?)

More assessment

2007-12-13T09:40:00.000-08:00

I had more of an early start then usual this morning, I was sitting in my bed drinking tea when the nurse came in and kindly informed me the porter was on his way up to take me to the other side of the hospital (which happens to be on a completely different street) for a ultra sound on my stomach, So i had to quickly brush my hair, pop on a jumper and my slippers then off I went - according to the ultra sound man all is looking very normal which is good! and I came back here where there was a lady waiting to connect me to a 24 hour heart monitor, so that's another two things I can cross off my assessment list - yey!!!

This afternoon the hospital had carol singers come up to the ward, it brought everyone out of their rooms and all together chatting and laughing, there was malt wine and mince pies. It was really lovely to see. Tonight my friend and her boyfriend are coming to visit me should be good fun.

I would like to thank everyone for their kind comments, it's nice to know people are reading. xx

Dinner out

2007-12-12T10:48:00.001-08:00

I've had such a good evening! My lovely boyfriend came to see me (big smiley face) it's always great to see him and he always makes me smile, laugh and just happy. First of all we had a nice catch up and he showed me his nice new coat - he looked very handsome, then we went for a walk to the lift and back, then we went out to a local restaurant called cactus blue for some dinner. I chose from the tapas menu so i had mini nachos, tiger prawns with chili sauce and mini tomato bruchetta's and a coke and J had a messy burger (proper name for it, and yes it did look like a mess with the amount of stuff they put in it!) with skinny chips and a coke, it was so lovely to be out for dinner with him as I have been in hospital for quite some time and I felt like I was back to myself again (I feel really good today) and it was great, we held hands over the table and I loved being out with him, then it was back to the hospital, J made my wheelchair ride back to the hospital somewhat interesting with little swerves here and there, felt like an obstacle course!! when we got back to the hospital we went to the kitchen and made some tea, popped in to see my friend Kate who had been admitted today then back to my room. I had a wonderful evening and I can not wait to do it again!!!! I am a very happy Lady tonight.

situations

2007-12-10T08:59:00.000-08:00

You learn to adapt to the situations you are in and it's the same with poor health, my decline has not been a rapid decline it is progressive and slow, so slow you don't see it happening and you slowly adapt to the things you can and can't do, like walking for instance - when I would go shopping I'd walk to a certain amount until i needed to sit down but I'd make up excuses to sit down such as 'my feet are hurting' 'I've got a text/I need to send a text' little things that enabled me to sit down and get my breath back and make others totally oblivious to the fact that I was indeed struggling. But there comes a point when you need to accept that you are indeed having a tough time and you do need some help even though you don't want to believe it. In May this year I was told I'd need to use some oxygen whilst walking as my saturation's would drop dangerously low and make my heart need to work harder and cause strain on my heart (an added problem I could do without) but at the time I refused to accept that I would need oxygen and I went home with it but never with the intension of using it. I carried on doing the things I did before, using the same excuses and getting away with it, it was only in August when I came in for 10 days intra-veinous antibiotics which turnout out to be a 3 month stay in hospital on oxygen 24/7 and still with the hope that my saturation's would indeed go up and I'd carry on as before, but this never came and I have had to learn to accept that I do indeed need oxygen to help me live my life and carry on doing the things I enjoy doing without the struggle. October came and I had planned a big evening out with my mum for her Birthday, we were going to go out for an expensive dinner in London and then out to watch a show and I had every intension of walking in and out of the restaurant and into the theatre but as time grew closer to the event itself the physios gently suggested to me that it would indeed be an idea to look into getting a wheelchair and use this to take to the theatre - again i found it very hard to accept this as I would be relying on someone else to take me out and lose what independence I had, it took a while to get my head around the idea of using these things to make my life easier but I now have chose to accept it and I do get upset about it and I hate the fact that I can not just nip to the shops randomly as I did before but my wheelchair and my oxygen are my tools to help me get around and continue to live my life as best as I can.

I never think of myself as 'ill' this is because I know no different, it's only when someone from the outside asks me questions about my health and I begin to tell them such things as my daily regime that I realise this is quite bad. I was telling a woman today about CF and she asked if i took medication and I said yes, I take 12 with meals, antibiotics, nebulised antibiotics, physiotherapy, inhalers, various other nebulisers and so on and she said 'oh my god' and I just thought to myself gosh to someone who has never done anything like that in their whole life it must sound like an awful lot to take on but when you have done it your entire life you don't think twice.

Weekend leave

2007-12-08T12:10:00.001-08:00

Whilst in hospital I get weekend leave which is fab as the ward is so quiet on a weekend the days just drag - it's OK to be here in the week as your so busy seeing Dr's, nurses, having various observations done that the time just fly's but weekends are quite boring, so this week I managed to get out early and leave on Thursday.. Yey! Thursday evening was a nice relaxing one at home, spent time with my family, had a nice bath and snuggled up in my bed watching Eastenders, yesterday I did pretty much the same - except my boyfriend came over and stayed the nightwhich was very lovely as after the transplant talk I have been quite down but my friends and family are so amazing that they make me smile and take my mind off things, which is another great thing about weekend leave - I get to see all the people I care about who I otherwise don't get to see in the week as my hospital is quite a way and when you've been at work all day, had dinner, waited for the congestion charge to end it can be quite tiring driving here and then back so that makes weekend leave great!

Unfortunately my weekend was cut short as today (Saturday) I feel quite tired and just plain rubbish really so I have decided to come back just in case I got worse during the night, so here I am I'm going to have a shower and an early night. Was suppose to go to the cinema tonight with my boyfriend too :'( but he's on Christmas holidays from uni so hopefully we'll get to do it very soon!

Transplant talk

2007-12-07T01:36:00.000-08:00

Yesterday I had a big transplant talk with my CF specialist nurse, my parents were going to come to this to help support me but unfortunately my mum couldn't get anyone to cover her work so I said I'd be fine to have it alone and they will book their own appointment with her and have the talk another time.

It started at 3 and we went through all the various topics such as death before transplant as unfortunately not all people on the transplant list get their call in time and sadly die waiting, she said that they will not offer me intensive care ventilation if I got to that point as they don't think it's the nicest way to die, I need to talk with my family about my wishes - if not talk write it down so they have some help when I have gone, they usually offer a transplant to a patient when they have about 18 months to 2 years left to live and that the waiting time for transplant is minimum 18 months (which doesn't sound too good when you only have 18 months to 2 years left to live.) Transplant is not a cure, you are swapping one set of problems for another set, side effects of drugs, then she said now for the good stuff - transplants when they work are great, you can go on holiday (ideally to places with good medical care and transplant care) which is a shame as I have always liked the idea of going to Thailand and seeing the beautiful beaches they have to offer but I would much rather be able to be alive and breathe so Thailand can take a back seat, we spoke about the procedure, the lines I'd wake up with - a neckline, 6 chest drains, a line in my wrist, a cafater - and she said whilst in recovery you do not have any dignity but they've seen it all before - the talk was really tough and I've only written some of the things that were said as to be honest there was lots to take in and slowly bits of what she did say are coming back to me as when she said about the whole dying before transplant thing my mind kept thinking about that which I guess is why it's best to do these things with family or partners as people can talk about things you may have missed.
This talk has really made the situation I am in hit home and transplant is tough it is not an easy decision and it is not as black and white as people on the outside may think, I am going to take my time to think about what I'd like to happen if I do pass away before transplant which is a very upsetting thought and is something no one should have to do but it needs to be done and I'd like to make it easier for my family if that does happen - I never thought I'd have to plan my own funeral.

Before I go to sleep

2007-12-05T13:32:00.001-08:00

I usually find that before I go to sleep my mind spirals out of control with thoughts and feelings about there here and now and the future, last night I was thinking about if I get to go on the transplant list and what it would feel like to get the call and my toes curled at the thought of this as it is so very scary. I often think that I'd pass out with excitement, anxiety and every other possible emotion, I also think about what it'd feel like saying goodbye to all my loved ones before the procedure and not knowing what the future holds for me. I get really scared by the thought of not getting the call but I also get scared about the call and I don't know why all I know is I don't want to die, I'm not ready.
My mind also drifts in and out of day dreams of my possible future, what I'd like to do, where I'd like to go, how it'd feel to do things everyone else can easily do - yesterday and today I have been for small walks with the physios to help strengthen my muscles and stop me relying on the wheelchair so much and I felt like I'd accomplished something, I felt so proud of myself and I thought to myself it's stupid really because it's something others find so simple and my news for the day to family and friends is 'I went for a walk today' where as other peoples days are somewhat more interesting and I want mine to be like others so much -a friend of mine just text me and said she was sorry she hadn't called me tonight she'd been at work, done stuff after work, had dinner and has just sat down but she'll call me tomorrow & for some reason this upset me, I think it is because I have waited all day for people I love to finish work etc so I can speak to them about their day and all the interesting things they have been doing and today I didn't get a chance to do that and I do understand how busy people are but it is just disheartening when something doesn't happen. I just want my life to be full of things other then this hospital, I want my life to be different to this and it really gets me upset but i guess patience is the answer.

A little trip out.

2007-12-04T09:55:00.000-08:00

I had a really nice afternoon, I managed to get out for a little trip out- yey! it's so nice to just get out and away from the hospital and think about something else for a change.
I went with a woman called Jean who comes to the ward every Tuesday and offers to take the patients out on trips - not many people go on these trips due to cross infection risks so this afternoon it was just me and Jean but it was great as I got to choose where we went so I chose Covent Garden. We left the hospital at 2 so I had to make sure I had ordered a full tank of oxygen and had my drugs early. I discovered Covent Garden is not exactly wheelchair friendly as the cobbles are all different shapes and sizes but that didn't stop us going around all the market stalls and seeing everything they had to offer, the Piazza was decorated so lovely, with lights and there was a big sculpture outside - four baul bauls, so big you couldn't get your arms around them! I never really realised how beautiful it is as most times I've been I've been thinking about my breathing and got all hot and flustered from getting from one place to the next so I have never really had the chance to stop and take it all in and I had that opportunity today and it was a wonderful experience. We went around the market from stall to stall and into some shops - my boyfriend works in Covent Garden and we had arranged to meet at some point whilst I was out, so he called when I was in one of the shops and asked where I was and for a moment I hesitated to tell him and I got worried he was out of work and might come to the shop to meet us and I really didn't want him to see me in my wheelchair and on oxygen, my eyes watered at the thought of this, it's stupid really as he's seen me in the chair before and I have been using oxygen since August and I know he doesn't care as it makes things easier for me and makes me feel alot better and he loves me for me. So we arranged to meet in Starbucks for a drink and it was really nice I had a hot chocolate with cream, Jean had a hot chocolate too and J came in and ordered a tea, we all had a nice little chat and J went back to work whilst me and Jean went around some more of the market and I brought a studded belt (one I've been wanting for ages and now with all my new weight I can finally buy a proper leather belt.. woo! and next on the hit list is a new pair of jeans but I'll save those until another shopping trip) on the way back to the hospital we drove past all the major landmarks in London which was really nice. We got back to the hospital around 5 which was just as well as I had used up all the oxygen and was on the red, I saw a few people in the patient room from my old hospital so I stayed in the patient room for a while and had a nice little chat with a cup of tea then went back to my room to try on my new belt and get settled for the evening.

My over all thought of the day - A wonderful day out.

Assessment

2007-12-03T02:50:00.000-08:00

This year has been the hardest year for me, my health has just been so up and down and over all I'd say I've managed to spend about 6 weeks out of hospital.
In October the professor said to me I needed to think about whether I wanted new lungs and I do, but it's so scary. I want it but I don't want to have to go through it and it almost feels as though It's not happening to me like I'm watching it happen to someone else. I have days when I don't think it's really happening then all of a sudden it creeps up on you and I get so scared and just cry, have so many emotions floating around I just don't know what to do with them all.

I am currently in hospital and have been for the last 3 weeks, and every day is the same, your rudely woken by the cleaners changing the bins and trying their hardest (well it seems that way) to wake you, 8 o'clock - the catering staff change your water jug (still trying to sleep) 8.15am the student nurse turns on the light (because she needs to see) to do routine observations - these are blood pressure, oxygen saturation's, heart beat per minute and temperature, 8.30am catering staff come in and shout (I'm not lying) 'BREAKFAST? TEA OR COFFEE?' I usually say yes and they put in on my bedside table so I can eat it at 10.30, and at 9.30 the physio comes in to help me clear out the stuff from my chest which does help I just wish it didn't need to be done so early but it does so I shouldn't really complain. As you can tell I am not a morning person and don't get me wrong I am not complaining about the hospital as I can not fault them at all, the staff are brilliant at what they do, the facilities are fantastic and the care is great - I just don't like the ridiculous times things need to be done.
So today The Dr came to see me (he's quite young so he's a lot easier to talk to and have a joke with) and we did some more of my transplant assessment. He needed some information about my medical history and asked things such as 'have I ever had major surgery? have I had a pneumothorax? Have I ever done hard drugs? (of course not!) do I smoke? (of course not!) have I ever had any major bleeds? and then he handed me a blood testing form with lots of various different tests circled - there must have been about 20 different things I am being tested for, as I said in the beginning of the post transplant is scary but the assessment is also very scary but someone said to me last week to think of this a a bigger annual review so that's how I am looking at it.

First post

2007-12-01T14:05:00.000-08:00

This is my first post so I think I should start with introducing myself..

I am 22 years old and am currently being assessed for a double lung transplant caused my an genetic illness called Cystic Fibrosis which is slowly destroying my lungs. I have spent large amounts of time this year in hospital due to re-occurring chest infections. I am trying to remain as positive as I can whilst I wait to find out whether I am eligible to go on the waiting list for a double lung transplant which will save my life and enable me to live a happy and healthy life. If you want to learn more about Cystic Fibrosis please visit the website www.cftrust.org.uk or if you want more information about organ donation please visit http://www.uktransplant.org.uk/.

Well it's late and I will post more soon.