Wednesday, 30 December 2009

x Christmas x

I havent wrote in ages!! Ive been so busy!!

Managed to come home on Monday 21st as planned as was looking forward to seeing everyone from home but then the snow decided to show itself!! No-one could move or come down apart from my fabulous boyfriend who walked down here with the doggies!! The run up to xmas day was made as i had to wrap everything, check everything that i had ordered online from hospital and get the last little bits and pieces from shops.

Christmas day was great!! Was spoilt by mummy, daddy, scott and his family. Scott picked me up from my house at 11am (still couldnt drive as i was too sore and stiff) and we went to his and came back to mine by 1pm. We had xmas dinner mmmmmmm.... and then went up to see Daddy and spent xmas evening in the pub!! How great :) By boxing day, i was knackered and did absolutly nothing!!!

Since leaving hospital which is just over a week ago now, i have already been coughing alot and its really got me down. Sometimes you just think 'give me a break!!'. I had clinic yesterday anyway so went along sulking and not looking forward to what they were going to say. Turns out it wasnt too bad - my weight was the same which i was happy with considering how shit i was feeling and i didnt do lung function. The coughing is due to when the top bit of my left lung had collapsed and now it had expanded back, it was still clogged up from before - great!! Got some oral antibiotics to help so am really hoping they work. Lance took the rest of the plasters off from over the stitches and they look fine - im actually pleased!!

Also on a CF matter, I spent most of Sunday night quite teary.... A girl called Jessica Wales, 20 years old, has been waiting for a lung transplant for 4 years. She was taken really ill just before xmas and spent it in hospital. On sunday, it was said that she had taken a turn for the worse and people were really worried she wouldnt make it through the night. Just before i went to bed, i looked at some facebook statuses on my phone and one of them said that she was having a transplant! I went to get the laptop and had a look for myself and it was true. She had been called in the evening to say that there were some lungs for her and it turns out they were a match and she was currently in theatre! As i write this, she is in intensive care but stable. I dont even know her that well but have followed her story but it still made me teary and it just shows you, never give up and miracles can sometimes really happen.

I am looking forward to New Years as me and Scott (and hopefully my best mate Steph and her bf) are off to Canterbury to dance!! Will let you know how it goes!!

x Lots of love x

Sunday, 20 December 2009

x My little port x

I did it!! I actually went ahead and had my operation for my port!! I know its not a major operation and its fairly easy to do but im quite proud of myself for agreeing to it and actually going through with it. I didnt sleep at all wednesday night due to nerves and then everyone started turning up at my door from 8am onwards. First the anesthetist lady turned up at 8am to ask me questions and tell me what would happen and she was lovely but then the surgeons registrar came in to talk about the procedure. He kept talking about me having it put in my arm and i started to panic as i wanted it in my chest. I know some people have it in their arm but because of my struggle with weight, there is a risk of it pushing through the skin and coming out your arm - no thank you!! Thankfully, Lance came in and saved the day by demanding i had it in my chest. He actually looked really angry with him and if i hadnt have been so scared and drained of any sense of humour im sure i would have laughed!! The surgeon came up and he was lovely and agreed the chest is an easier place and he was very happy to do it there.
I had to change into a lovely backless number which touched the floor lol and then was collected at quarter-past 9 by a porter who wheeled me down in my bed to theatre, along with mummy and lance of course. At this point I said i couldnt do it but they didnt listen to me and connected the drip to my line. First the painkiller is pushed in and then the anesthetic, however, i was told that i made them all laugh because the painkiller started to go in and i fell asleep before the anesthetic went near me. I dont remember anything apart from feeling very lightheaded for 2 seconds and then waking up in recovery.

First thing was me asking for a drink as my mouth was soooo dry and then Lance turned up to get me - typical Lance first words were: "How does your new peg feel?" and which point i promtly and loudly told him to piss off!! Mummy was waiting for me on the ward and then Daddy turned up and then Scott came after work. I had lots of texts, phone calls and emails from people asking me if it went ok which i tried to answer as soon as possible. I had been back on the ward 10 minutes when Lance came to rip out my line as i no longer needed it in my arm and change the dressing over my port as the needle wasnt protected. These both really hurt!!

Me waking up looking very attractive!

I had an xray as soon as i came back and it showed that i had a numothorax, which is trapped air in my lung as far as i have been told. It is small so i have been put on loads of oxygen to try and blast it out. Highly annoying as its a mask with a big tube so all weekend i have looked quite like a baby elephant, a smelly one at that as it is hard to wash at the moment.

The next day was very sore and i slept alot because of the painkillers and the swelling and bruising had began to show. Now it is a few days after the operation and im doing ok. Still sleeping alot which is annoying but ive stopped the painkillers and am trying to manage on just regular paracetamol. Still sore and stiff but thats to be expected for a while. Am going home tomorrow so cannot wait but am NOT looking forward to seeing Lance - he is going to take off the dressings and take the needle out my port and i have already been warned that it will hurt!!

Me with my trunk and port which is covered

Am glad most of it is over now and surely (in the words of D: Ream) things can only get better!! Thanks to everyone for your messages and to some CF people who have given me much needed advice!

Tuesday, 15 December 2009

x How bored am i x

God - been in here two weeks and i have been soooo bored! Ive had enough of reading, watching tv, colouring and eating - what else is there to do apart from live on the computer allday but then i just end up 'looking' at things on website and before i know it i have spent more money!!

Not really much to say as im still in hospital and nothing exciting has happened apart from my appetite is back fullblown and i am addicted to nandos (we have been 3 times in a week!!). Bearing in mind i have been eating lots my weight has stayed roughly the same - what more can i do!!! NO i dont need a peg as i am eating and wanting to eat and if i just have feed on top of that it will just make me sick. I personally think it has something to do with the diabetes cause since being diagnosed i have lost weight and the insulin - i was told - is supposed to help with the weight. Im only having it with my main meal but my sugars are up and down so it needs to be sorted. I had a reading of 2.8 the other night so they wouldnt let me sleep until it went up incase i went into a coma. After many jelly babies and nasty glucose tablets, 2 hours later i was allowed to sleep!! Fun times!

On the other hand, my lung function has gone up alittle. To be honest, it wasnt an earthshattering amount but its going in the right direction. Ive been going to the little hospital gym in the afternoons which involves me walking there, doing 7 minutes on the bike and walking back. Yay me!! :) Id just got back from the gym when i did lung function so i reckon it could have been more if i wasnt as tired!!

Next thing is my operation on thursday and im pooping myself....sometimes im fine but then sometimes i panic. Hope it goes well and im not too bad afterwards...keep me in your thoughts please!!! Speak to u all once im home!! xxx

Sunday, 6 December 2009

x Hospital has come early x

Argh!!! Where do I start...cant believe i havent updated this thing in 2 weeks nearly but hopefully u will forgive me once i tell u why!!

First of all I have to mention that on Saturday 28th November morning, my beautiful friend Anna Le-Ontour lost her battle with Cystic Fibrosis aged just 22 - due to be 23 on 1st December. She fought so hard over this past year which included her being ventilated twice and her heart stopping many times a day for a few weeks. Despite this, she pulled through and managed to get home. However, her lungs had been damaged and at the end her lung function was only 9% and it was all too much for her. Right up until the end she refused to give up and kept smiling and in good spirits for her family and friends. I miss you so much already Anna but ive got my card from you and the memories will never leave.

Without that weekend being hard enough, my chest got worse and i was getting more and more breathless but was due to come into hospital on the 7th anyway. Icouldnt hold on the extra week as it would have been spent just sitting at home anyway so, with alittle pushing from mummy and lance, I came in on Monday. After a week of ivs im starting to feel human again....i havent been online much as its so busy in hospital and the ivs make me sick before i get better but my chest is clearer so its going the right way.

This weekend I managed to meet up with the girlies from work to have our xmas meal. I cant say how nice it was to see them all again and how much i miss them all. Also dragged myself out of bed early this morning (sunday) to complete a 5km walk for Cystic Fibrosis around Greenwich Park. We did it in an hour and a half with the aid of my wheelchair!! It was brilliant and so funny to see hundreds of santas. The weather was terrible when i woke up but by the time we got there it had stopped raining and the sun actually managed to pop out!! Pictures and videos to come soon.

I think thats it for now as im tired and off to find something to eat in this place...just want to send lots of love to some other CF girls who are having a tough time at the moment too...lots of love Gemma, Victoria and Jenni!!!!