Let's Party!!!

Ooh I'm starting to get excited about my 10th Birthday!! Well it's not really my 10th Birthday but the 10 year anniverary of my transplant, it's in 5weeks and I've decided to have a party! Nothing huge, just a bit of a 'pick-at-what-you-want' dinner, hopefully with some liver in there! I want a cake from ASDA where you have a photo on and I know it sounds weird but I have a photo of me in ICU after so I want that on, only problem is that it's a poloroid and I don't know if you can use them on the cakes! Anyhoo, I'm going to get balloons and banners with '10' on them and have a game of pin the liver on the body! And to finish... party bags, although slight twist is I'm going to put forms to join the donor register in them along with the usual slice of cake, sweets and a jokey toy of some form! I know it's a bit silly and over the top but I feel so grateful to have got to this milestone with so few problems! The day before all this madness is going to be my 'donor day.' I haven't completely decided what I'm doing but I plan to do a few things to say 'Thank You' and remember the life of someone who although I never met became the most important person in my life.

Silly lungs!

OK I'm not happy!

I blew my little lungs out on Monday and I got 1.67/1.98! 12weeks ago I had 2.13/2.something... (I'll look out the letter and edit it in later) I had FEV1 of 68% and my rough calculation for now is 54%, this is after 8weeks of oral antibiotics an 3weeks of IV's in these 12weeks. I do feel loads better, even the night time is a bit better so why is the spiro worse?

I saw the top doc in clinic, he has asked me to move my Dnase to the morning, and do it religiously and come back in 4weeks and if it's not up then... well I don't know... my lung function will be up!

On pluses my weight is up .2kg and I realised it has been rather a long time since I've had any blood in my sputum, just a bit post running in Spain over xmas so I'm thinking that's rather good.

Not a lot is happening in my life right now, well actually it is but it's all mundane crap, and stuff that's not really my crap to tell you about but still taking up my time! My nan's birthday went well, she seems very well at the moment, it's hard to explain but my Grandad was here whole life, she never went and did stuff socially because she just enjoyed been with him (and because she was a bit lazy as well.) Now she has to go out and have a social life or she is stuck in alone in a big house and it's doing her good, she looks well, healthier. She hates the nights though, going back home and being alone all night and waking up and making breakfast for one. We are hoping to take her to see 'The Phantom Of The Opera' soon as a late birthday treat. I'm really hoping it all comes together as I would really like to go myself. I remember making my ex taking me to see it at the cinema as a date and he wasn't impressed but I was really blown away with it, when I watched it on the small screen even though it was still really good it had lost a little sparkle which I think my have something to do with the 14" screen and no surround sound! LOL!




I HATE SNOW!

As different as Day and Night

So went yesterday to watch the filming of the How To Look Good Naked naked catwalk shows in the Bullring yesterday and it was amazing but such a long day and so far it feel like it's undone most of the good work of that final week of IV's. I'm hoping after a day of mostly rest today and a good night sleep I will feel good again.

Although I'm not holding my breathe on the good night sleep as I'm not sleeping well at the moment, my lungs wont let me, I feel quite well in the day but at night I just can't stop coughing, the really annoying sort of coughing where I have to fight to get the air in behind the sputum to move it. I can't work out why I feel fine in the day, tired but fine. It's like two different sets of lungs. Also I have this annoying pain that feels like my stomach is overfull and makes it painful to breath in past about half way. Not good with the coughing! Adding in the fact I'm waking up every few hours to go to the loo I'm really not getting much sleep. Did I mention my breathing is perfectly normal for me in the day? It's frustrating but what to do?

I treated my self to some clothes the other day, I haven't brought clothes for ages, I suppose I have been disillusioned with clothes shopping lately, my weight has been so up and down (mostly up) for the last year that I just felt it wasn't worth getting nice stuff for it just not to fit soon after. I didn't go crazy, got a nice skirt from the last of Topshop sale for £3 and a dress for £12 and a few bits from Primark. Quite versatile stuff that feels quite summery but can be styled very easy for winter too, so if I do put on or lose weight I can just save it for later and I won't be wearing it in the wrong weather!

Not much else to say, I'm going to see my Nan tomorrow, it's her birthday on Monday so we are having a big meal for her tomorrow, going to be rather weird with out my Grandad there. Monday I'm back over at the hospital, fingers crossed for lung function been up, if not it's a stay in Costa Del Heartlands... maybe the Bullring yesterday wasn't the best idea... oh well, sometimes I need to do things just for me, fuck if they are going to make me ill, obviously there are limits but sometimes pushing myself too far or missing an odd treatment needs to be done to keep the life balance, can't let CF rule too much ;-)

I hate dentists

Just going to skim over the gap between now and the last post... my Grandad's funeral went really well considering, it was a very beautiful service that summed up him perfectly, simple, heartfelt with a few things thrown in to make you chuckle. I spent most of the wake in a side room having problems with my port, next day got I got my 4th needle and a few days later I had some Urokinase put into it and that seemed to do the trick. I ended up having a third week of IV's and finished Monday just gone and go back to clinic on Monday so hopefully my lung function has travelled in a different direction to the last 3 clinics and I have made up at least some,if not all of the 10% I've been down. I do feel better if not 100%.

I went for my Liver ultrasound yesterday and everything seems OK, my spleen is 16cms which is a little bigger than when the doctor measured it about a year ago. I'm showing no signs of other liver damage on the scans, the doctor doing it said it doesn't always show so they may want to do a biopsy anyway or it could be that the blood tests have picked something up before it's showed up on my liver or it might be that the blood tests are a bit off but there is nothing wrong. I'm hoping for the latter!

I can't remember whether I mentioned my learn direct course on here but I'm starting to learn stuff on it now and really enjoying it. To start with I was just going over very basic word processing and I was a little bored but now I'm getting to learning new stuff I'm really enjoying it and hopefully it's a start on getting somewhere in the whole job scene.

I went to register with a dentist, the receptionist was a bit shocked when I said I hadn't been to a dentist in 5/6years especially been post transplant, I've kinda been shouted at by my hospital for not going to the dentist so I thought I should finally bite the bullet and be a good little girl and brave it! LOL!

On a side note I am nearly 10years post transplant, just over 6weeks so I am trying to plan a few things. Something for my donor, to say thank you for giving me the gift of life and for a celebration of his life and something for me and family to mark the anniversary of my new start! Have a few ideas but not putting anything down just yet but will do something for my donor on the 28th March and something for my 10year on the 29th which is the day I actually had my transplant.

Anyway I'm off, I need sleep!

IV's and my Grandad

OK so I'm sure anyone with CF will know what I'm talking about when I say about some days just really knock the wind out your sails, you can have felt really healthy the day before and then BAM! Chest really hurts, extra coughing/coughing fit every few steps, just talking can make you breathless and all you want to do is skip to the next day, Thursday before last (14th) was one of those days although I hadn't felt healthy the day before. I had clinic and was pretty sure I needed IV's and was right, missed the first train coming back and then the next one was cancelled, I felt so tired that I kept just crying on the station and I really wanted to get home. Finally did after rather a while and then I wished I hadn't although it wouldn't have changed things. Earlier in the day my Grandad had suffered from a huge heart attack and passed away. I can't even begin to explain how hard those words were to hear, my Grandad was one of those people you expected to be around forever, despite been 77 he seemed to be the healthiest person in our family. He was very active and even though he was retired he still did odd building jobs for people, he was actually on his way to look at a job when he died. I still haven't got my head round the fact he is gone, silly little things like DIY jobs, I keep looking at little things and thinking 'ooh, I'll have to ask Grandad about that.' and then it hits me that I can't...



He was a short man, ab0ut 5", and my younger brother (6"3') used to jokingly lean on his head! Always worrying about something little but the big things used to go over his head. The best brickie in the town, not the fastest but got the job done to perfection. Always had a little invention, not the sort to make him rich but to make his jobs a whole load easier. Loved having a mobile phone but didn't have a clue how to use it, had to check with one of the grandkids if it was even charged. Wore clothes to bed (including trainers) cause he didn't like having the radiator on all night! Loved my Nan, wholely and unconditionally for over 50years and has left the biggest hole in her life, he was the biggest part of her life.

Life is so precious, so sacred, you never know when it is going to be taken from you... I really dont know what else to say right now...

Xmas, New Year and Jess.

Spain was wicked, loved waking up everyday and not having snow all around and having the kids there. Seeing Sofia face at the chocolate coins 'Santa' had left her leading from her room to her presents, and boy was there presents! Me and my dad had taken almost two full suitcases over from all my family. Marucs didn't understand the whole presents thing but he did love playing with his toys! Me being so clever managed to break my eflow as soon as I first went to use it... oh this reminds me of when I went to Corfu a few years ago and I was in hosp within a few days of been back, this time was 5days before I was put on IV's. I did buy an air compressor over there which was a blast from the past, slow and noisy, after 3days with no combivent it felt like heaven in my lungs!

As my Dad has a gym in his house I decided to try and run a bit (as no-one there to see me making a twat of my self) and was quite a good job as first time I fell off the back, I did get better in the time I was there and was running for 4mins by the end but OMG it hurt!! Anyway when I got back it my lung function was only down a further 1% so it must have done some good.

Whilst I was there the wonderful Jessica Wales finally got her transplant after more than 4years on the list. I had only spoken to Jessica a handful of times but she was one off those people who you couldn't help but admire, a real fighter, the sort of person who you expected to fight through everything, sadly after so long waiting her body was too weak to recover from such a huge operation and she passed away just a few weeks later. This hit me like a tonne of bricks, I never thought I would feel this way about someone I never met and hardly spoken to but it really did. Just a few days before I was talking to my flatmate about organ donation, I knew she wasn't on the donor list but I never pushed it, I know she isn't against been an organ donor but still... she is filling in her drivers license form at the moment and I said to her 'you are going to tick the box to be an organ donor aren't you? It's the quickest way to do it.' and she just sort of mumbled that she didn't want to think about dying, this did kind of annoy me a little but I just said to her 'Yeah but you spending two minutes thinking about it means someone could stop thinking about it' another mumble, I could see she was uncomfortable but pushed on telling her that not joining the list wouldn't mean she would live forever or that she wouldn't have a fatal accident just that it could mean potentionally two people could die. Anyway she has ticked the box but it got me thinking about people's perpectives about things, why would people think about stuff like that if they didn't have to? And how can we make people think about things? How can peoples perspectives be changed so more lives be changed?

I'm back

I finally have internet access! I have been looking at netbook/dongle combo's for quite a while now and yesterday I just went for it and am now the owner of a Samsung N140 netbook and a dongle from 3.

I have so much stuff I need to blog about, it's been a long, hard few weeks and I have a lot in my head, I will do a few update blogs over the next few days rather than stick everything in one long blog and I'll try and write these how I felt at the time rather than with hindsight. I don't know how well I will be able to do this but I'll try, it's weird how hindsight changes your perspectives. Perspective is kind of a buzz word for me right now but I will explain more about that later.

Anyway I have to go right now but I will try and do the first of these update blogs later.