Monday, 16 March 2009

x Thank God Im Clear x


Text from Lance to say I am clear of MRSA!! Thank god for that! Have been so nervous since hospital on tuesday so am sooooo relieved!!

Things are finally looking up at the moment for me - i shouldnt say that because as soon as i do things take a turn for the worse!

Im still doing my physio and am just about to go for a walk round to meet mummy for lunch at the school as its a sunny day :) but starting back on my nebs after the i.vs has given me a husky voice!! Making me cough alittle and Scott was not impressed the other night as he just changed the duvet as the puppy had decided to wee on it, and then i was sick on it through too much coughing!! Oh well - dont know who's worse - me or the dogs!!

Wednesday was good - uni was boring but the meal and film were great and had a big catch up with Sirin. Was soooooo looking forward to friday and going out with the girls from work but it didnt happen as everyone was busy....that was a shame but its hopefully going to go ahead in april. Saturday I went to a family friends 60th which was ok - it was nice to catch up with people i hadnt seen in ages - they said i looked well - even better!!

Oh....Im soooooo excited this week im getting things sorted out. Last week, I couldnt even look at uni work - i wasnt in the mood and needed a rest after the past few weeks so am getting back into that, but even better news is that im going to look at some cars this week - a peugeot 206cc - one of them is black and one is silver!! Hope they are as good as they look - im sure i will let u all know if i do get one!

Right im off now to sort out my room - it looks like my ironing has exploded and ended up all over my room so better do some so that i actually have some clothes to wear!!

x Lots of love x

Wednesday, 11 March 2009

x Clinic Report x

Got to clinic and weight was down to 45.3kg but i knew it would be as I had a bellyache all day!! Typical!! They didnt really mention the weight so thats a good sign (normally I get moaned at so I was happy)!

I was suffering as I couldn't take my anti-histimine for the rash as I was driving and it makes me drowsy so when I got there, I showed the Dr that it was still flaring up even though I stopped the Vancamicin last wednesday...she didnt know why it was still happening and we couldn't link it to anything else so I got a bit worried....she said if it continues then I will be reffered to a dermatoligist.

Lung function weren't up but I will focus on this and do exercise everyday to get it up (hopefully!!) - its still at 38%. :(

As for the MRSA, well I was angry, as when I was in hospital and they found it in my sputum, they then did a skin test to see if it was on my skin....I didnt hear anything back so forgot about it but my Dr looked up the results and told me it was positive on my skin too!! Why didn't they tell me?? I asked if that could be the rash and whether anyone can catch it but she said no to both so at least I don't have to be locked away!!! I gave them another sputum and they did another skin test and I will have to wait until monday when Lance (my CF nurse) rings with the results....I will worry until then.

Other than that, Im feeling ok and just trying to get back to normal....popped into work before hospital and it was lovely to see everyone!! Im going back to uni today and then going to the pictures with Sirin to see Confessions of a Shopaholic, so that will be nice to see her again!!

Will let you know about the results as soon as I know.

x Lots of Love x

Monday, 9 March 2009

x 2 Weeks In Hospital x

Well what a fun couple of weeks I have had...not!!

Caught a chest infection so went to clinic on the Tuesday and they said they were going to bring me in for 2 weeks of iv's....much to my disgust but I was coughing all day, pulling muscles and all sorts so I suppose it was for the best!

Went home and moaned and cried as I hate canulas and having the bloody line put hurts!! Wednesday I was woken by a text from my CF nurse to say the bed is ready and I got to the hospital at 12.30pm. Finally at half 7, the doctor appeared at the doors and attempted to put the line in but it didnt he tried again in the same vein and it still didnt work...I was later told that it may not have worked because I had had my line in that place before and it might have been scarred. By this time, I was crying and in pain, so after putting emula cream on and waiting another hour to numb my hand, with mum pinning me to the bed, he managed to get it in my hand...thank god!!!
I have my iv's at 6am, 2pm and 10pm so I always get tired and was knackered the next day so slept for most of it...mum came up after school with my lil bro with balloons and cards and food!!!
Friday started off ok until at 2pm, my CF nurse came in with the news that they had found MRSA in my sputum sample...I couldnt believe it and started to panic but he said they would treat it like any other infection and gave me a cream to put in my nose (which stunk!!) and I would have to have an extra drip which took and hour at 10am and 10pm. So from then on when I had any visitors, they had to wear aprons and gloves incase it was on my skin which made me feel dirty and even worse!

Mummy in her apron and gown --------------------->

The MRSA drip started on saturday morning but they had to test my levels beofre and after so I was woken at half 7 to have a lovely blood test and then started the drip at 10am....Scott turned up at half 10 and 15 minutes towards the end of the drip, he saw my whole body turn red and I began to itch all over. He went to get someone and they didnt really say much other than it might be me getting used to it and that it would go down once the drip had finished. Scott went at lunchtime and I had had enough so burst into tears when I spoke to mum....Thank god, my mate Steph came up with her mummy at 3pm cause they cheered me up (even though I looked a mess) and then daddy came up at night-time and brought me spagetti bolognase in a flask (to try and keep it warm lol).

By Sunday, I managed to get some sleep (mum guarded the door lol) and the iv's began to kick in so I started to feel better and cough less....days went by not too bad until wednesday. It was supposed to be my last day in hospital as they said I could go home and carry on my iv's until tuesday so I was looking forward to it. In the morning, I had the worst blood test ever...the stupid man got the needle in fine but towards the end the blood stopped so he began wriggling the needle about to try and get more blood hurts but he carried on doing it for about five minutes until I shouted at him to stop and so did my dad....when I looked at my arm once the needle was out, I screamed...I realised he hadnt loosened the tornakay so thats why there was no f***ing blood and my arm was blue!!! He was reported!! Wednesday night, I had my drips as normal but they were started a bit late as it was busy...the MRSA drip was nearly finished at 2am when my body suddenly went bright red and really itchy and then became all looked like I had fallen in stinigng nettles...the nurse came in and called the on-call doctor straight away and covered me in cream to ease the rash and gave me anti-histamine...anyway...managed to get to sleep by half 3 in the morning and they decided to take me off the drip (thank god) and give me oral tablets instead. Because I had that bad reaction, they wanted to keep me an extra day to monitor me which made me more upset so dad took me to the cafe next to the hospital for a fry-up :)

<<<---My rash got so itchy, I stuck my feet in a bucket of water!!

Finally, got home friday dinnertime and slept straight away....spent a nice night at my dads and then to see my puppy dogs finally after all this time even though I had to keep my hand away from them!! Slept at home for the rest of saturday and then sunday, had a dvd day with scott. Sunday night, we went to do my iv's at 10pm and the saline stung and then I tried to put the medicine in and it stung soooooo much I couldn't put hardly any in...oh vein had given up and tissued :(

I was due to finish the iv's on tuesday so said I didnt want another line put in just for 1 day but mum thought different so we had a big arguement and I went to bed...My CF nurse came round today and he took it out but we all had another argument as to whether I should have another one put in, I cried so we left it....Im now just trying to get the movement and strength back in my hand (it looks a mess!!) and the reaction to the MRSA drip still flares up quite bad which is now driving me mad!!! Got hospital tomorrow for check-up so will let you all know how it goes - most of all, I pray the MRSA has gone.

x Lots of love x

Thursday, 5 March 2009

x When It All Kicked Off x


Until January 2008, I had managed my CF quite well only having to have iv's and come into hospital about every 2 years. However, I must have caught a bad infection and left it for too long as after 3 weeks of being ill, I couldn't avoid it anymore and went into hospital. When I got there, I was rushed straight to the ward, they stuck a line in my arm and shoved oxygen up my nose!! It all happened soooo fast but I eventually found out my sats were only 79 (normally should be about 94 and they put you on oxygen at 93) and my weight had dropped from 50kg to 37kg (in stone I think thats about 8 stone to 5 and a half) in 2 weeks!!

Since then, I have struggled to put on weight even though I eat all bloody day, and have been admitted 4 times in 2008, 3 times for iv's cause of chest infections and 1 for a ng tube to be put down (the worst thing ever!!). For those that dont know - its a tube that is put down your nose and into your stomach so that they can feed you extra calories overnight...well that lasted 2 weeks and then got blocked. We were advised to put coke or lucozade down the tube, because its fizzy, it will hopefully unblock it. Well that didnt bloody work! There was too much pressure so wouldn't go through, it backfired and I got covered in coke and the tube got taken out.

<<<---- the bloody plasters could have blended in abit more!!

So overall, a shitty year and alot of tears and hard work...not just me feeling sorry for myself but because it affected so many other people and it makes me feel guilty (even though I know its not my fault)...also things like letting work down and missing my mates birthday made it harder.

But that was last year and the year ended on a kind of good weight was up to 44kg and I had a good appetite...although the first thing I opened on xmas day was my steriods (I had an infection and wanted to avoid hospital over xmas!!!). I got a wii for xmas from my lovely boyfriend, Scott and the wii-fit which told me I was underweight and weak...yeah thanks!!!

So, that was the worst year so far but im determined to get my weight back up so I can stop being harassed by doctors and dieticians about having a PEG, (a feeding tube which goes into my stomach) and fitness abit better as lung function is in the 30-40% range.

x Lots of Love x