Harefield - the 1st meeting

I havent hardly been home or sat down for too long in one place since my last blog on monday and im knackered so this weekend, i have done very little other than watching tv, reading the paper and eating!! Anyway, on to the important matter of my trip to Harefield hospital.

We got there early tuesday evening and got in the room and watched tv and took in the surrondings. We then drove out to a beefeater which i found on a iphone app (yay for iphone) and i stuffed my face with a big burger and then a brownie!! My poor mummy who never gets ill was really bad and didnt eat, was up all night coughing and was very tired. She felt really guilty for being ill during this time but i just joked that they might offer her a transplant and think we was there for her!! :)

I didnt sleep anyway. Mum was coughing, i didnt have many pillows, i was hot which makes me cough and i was nervous. We was up early as the appointment was 9.30am. I threw up all my juice outside the entrance which was a good start. We met the transplant co-ordinator who explained what would happen that day, gave us abit of information and then i signed a consent form to allow them to test certain things. The morning was spent doing different tests, all of which i have had before: lung function, weight, blood pressure and sats, urine and sputum sample, chest xray, heart ultrasound and ECG, and bloods. What a performance in the blood testing place!! I had a line in already because im on ivs so i asked them to take it from my port. They could do it but everyones port is different so i told her about mine. The blood came out fine like it usually does but she had to take loads for all the tests (think there was about 12-15 bottles). After the first 30mls she changed syringes and then got my mum to keep moving the syringe about to keep the blood moving so it didnt clot. Then another woman came in and started putting the blood in bottles whilst the woman was still taking the rest from me...in the end, I had 3 people in the room doing different jobs....i like to cause a scene and at least people knew i was there lol!!

After the test we got to have a break and some lunch. In the afternoon was a talk with the doctor. The 'main' man, Dr Carby, was away ill (just my damn luck lol) but the man we saw was lovely and spoke to Dr Carby over the phone anyway. We saw him for a hour and left at 3pm. He didnt say much about transplant, just the main info about getting on the list and what happens when, or if, you get the call. He wanted to know more about me, my health history and how CF affected me. He looked over some of the results of the tests they did that morning and said all of my other organs were fine except my lungs. I know that they are scarred and damaged, thats obvious, but its still not nice to see it in the xray or CT scan. There is an area in my top left lung that is bad and they are giving me a course of tablets incase there is a CF bug hiding in the area called Aspergillus. After that, he said that looking at the info given, and bearing in mind the test results that come back in 10 days are ok, then they are willing to look at moving me onto the next stage of transplant. This will mean me being admitted to a ward in Harefield for 3-4 days for more indepth tests and talks.

I left feeling ok about the day and we eventually got home at 5pm and i feel straight asleep until half 6. So now we wait until the results come in and try not to think about things too much until they do. I do want to go ahead with transplant as my life isnt the best quality now, but i need to take things at a certain pace in order to get my head around things. If things move too quick, thats when i panic and start to back out.

In other news, it was another busy day thursday and friday. Thursday was my best mate Stephs birthday so I went shopping for her pressies, cake and balloons which I then dropped off at Frankie and Bennys. She had never been there before so me and her family surprised her with a meal there and it was a great night. Friday I finished my ivs so went and had my needle out and spoke to Lance and Jen about Harefield and the tablets are being sorted to start next week.

x Lots of love x

Everyone is snotty!!!

Im surronded by coughing people and im attempting to avoid them as much as possible but when one is your best friend, one is your mummy and the other is your boyfriend, it is pretty hard! I finally got to see Steph on friday as she had got over the worst and then went out for a meal with Scott, Sirin and Carlton which was lovely. We saw one of the boys from 'Twist and Pulse', that dancing duo that was on Britains Got Talent (no i dunno what one it was either lol). I begged Scott to go up and start dancing next to him but he didnt as he wasnt well and then the boy left. Haha!!

Alot of the week we had the builder in who was sorting out the fireplace and putting the tv on the wall so i was banned fro downstairs because of the dust and stuff. I was confined to my bedroom and felt like Cinderella with y mumy running drinks and stuff upstairs to me - quite nice actually lol...but i was pleased to finaly get downstairs and relax on Thursday.

Poor Scott has been sufering all weekend with a cough, bunged up chest and lack of energy. He even had the day off today, which he never does so i know he isnt well. I have seen him but not hardly gone near him, which is horrible as i want to be there for him when he isnt well, like he is for me all the time, but i still have to be careful which he understands.

Over the weekend we had a trip to the supermarket to get some dvds and I wanted to do an 'irish' themed box for my daddy. He had tickets to go to Ireland to watch the rugby match this weekend. However, he is having radiotherapy so wouldnt have been back in time for todays session and he is suffering with tiredness alot so would have been too much hassle at the moment. I know what its like to have to cancel things due to illness, although i am a stubborn moo and often push myself and still go anyway, so i felt sorry for him. I dragged Scott round looking for things to put in my box and got lots of strange looks round Morrisons due to the questions i was asking i think hee hee. I did really well actually.

I turned up dressed in stuff left over from St Patricks day, which was timed well lol. He loved it and had ran out of tea and marmalade so that was even better!! :)

Me and mum are off to Harefield tomorrow. The appointment isnt until Wednesday but because its early and far away, we didnt want to turn up stressed or in a rush so are staying overnight in the flats at Harefield. Ive been talking alot with different people so was feeling better about things, but im starting to get nervous and the sicky feeling. Will let you know how it goes.

x Lots of love x

Transplant talks

Yes the time has come where transplant has been mentioned and appointment came through the post on friday for me to go to Harefield hospital for a day appointment to talk to and meet them. Harefield is a specialist heart and lung hospital so i couldnt be in a better place. Its on the 23rd March so not long now.

Friday I also started my iv's so it was a hard day as i was shocked at how soon the appointment was, paired with my chest being shit anyway and then i was tired as i had been coughing during the night, so not good timing. Over the weekend, I spoke to family and close people about the news and everyone took it really well and saw it in a completely positive way which changed my view slightly and has taken a BIG weight off my mind. For those that dont know much about the whole thing, I will need a double lung transplant.

I dont want to say too much about things yet as im still trying to get my head around things and dont really know what to say about the situation yet. I just have to write down questions that i want answered and take them with me. I do know a fair bit about transplant as a few of my friends have had them so i have heard bits about it. I honestly dont know how they have done so well and coped, im already abit of a wreck just thinking about it so i admire them and hope, if or when, my time comes, i can do as well as i see them doing. Truely amazing people xx

Me and mum will be going to the appointment and we will be going up the evening before and staying overnight so we dont have to leave ridiculously early in the morning and stress about getting there, as it will be a stressful enough day im sure.

My ivs are going well for the first few days ive been on them. Im abit itchy and red and have only been sick once so im doing well, just the tiredness mainly. We are decorating and sorting out the front room and kitchen this week, so i will be helping mummy with that and have lots of forms to help Scott fill in.

x Lots of love x

Only 4 weeks

Arghhhhh!!! Only 4 weeks roughly since leaving hospital and im starting iv's again on friday. Big fat bumholes!! I believe that its still the same infection i had in hospital and because it was such a big one last time, it didnt completely clear. I was still coughing alittle when i left hospital but i thought that it wasnt too bad...looks like i was wrong. I am normally quiet at night time and only wake up to turn my feed off and on the odd occassion i need a trip to the loo. However, i havent slept hardly in 3 nights in a row and even kept scott up last night (and he sleeps through anything and has become used to my coughing). Im still eating and stll managing to do things but its the coughing all the time and its starting to take longer for me to do things so i gave in and Lance has fitted me in.

Other than the general, mild shitty lungs, i had terrible bellyache over the weekend so had a relaxing, chill out weekend anyway. In my sleepy, 4am state, i think i forgot to take my tablets after my feed had finished and therefore, massive amounts of wind happened all of saturday and followed by pain and constant trips to the loo on sunday....i will leave the description there...i have some dignity :)

I have had a good time since my last post though. My hair is done and a pretty, renewed blonde highlighted colour and that always makes a girly feel better (although it needs attention now...bit of a wash and a brush is called for!) and Monday night, a group of us went to see the psyhic Sally Morgan show again. She was great as usual and i did have a little scare and my friend looked at me as if she thought the message would be for me!! My heart did start pumping hard but then the names didnt match up. Basically she started the description by holding her belly and saying about pain and then said her lungs were hurting and filled....obviously, i thought 'CF' and so did my friends around me, but it turned out to be an old lady who passed away after an illness.

Last night me and Scott attempted pancakes. The first one went horribly wrong and scott flipped it and it fell apart...haha, we are sooo useless!! The rest were nice though and drenched in lemon and sugar...i still have ingredients so may repeat it today with my little bro as he didnt have any yesterday. Mmmm im hungry now!!

x Lots of love x

Owner of an iphone

Yay!! I finally managed, after walking to a million different phone shops with Scott, to get an iphone and sort out my shitty blackberry contract. It took me days to figure out the damn thing but now i think i have the hang of it!! Of course i brought a pretty sparkley cover for it and sent everyone my new number.

I had clinic tuesday which went well. I didnt see my usual doctor, it was a junior type one. Normally i try and hold my toungue and just be nice to them but i had no clue what this man was going on about. The only sentence i did pick up on was him asking me "so...what are you doing?" What the hell is that supposed to mean? What am i doing now? What am i doing in general? What am i doing exercise-wise? So that was a quick meeting. My lung function is stable but i can improve it and hope to now im back on track, and my weight has gone up from 45.9 to 46.6kg!! Yay!! All in all a good clinic and i was the quickest ever and was out within half an hour.

Im also back at the gym. I had a meeting with the healthwise people there who check up on you and how your plan is going roughly every 6 weeks. I didnt change anything as, since last time i saw him i have been ill, then in hosp for 2 and half weeks, then getting back to 'normal' life and back to square one with my exercise tolerance as the chest infection knocked it backwards. Really bloody annoys me but i did suprisingly well. I spent 10 mins on the treadmill and got faster and faster (no running though!!) and then did lots of weights and stuff and felt really good. Im gonna go again soon :)

Im looking forward to getting my hair done tomorrow as its suddenly gone really dark and tangley so i cant be arsed to do much with it. Good job im well enough to have it done as it takes about 3 hours and them chairs aint comfy! Whilst writing this, ive been invited for an indian meal with daddy tonight so wont pass up that opportunity.

Oh - a few of my friends have shown me a piece of writing that describes really well what life is like living with an illness that you cant really see. Have a read if you can as it may help you understand alittle more what is normally very hard to explain.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

x Lots of love x