Time Flys!!

I have not blogged in ages! Been so busy with my friends and boyfriend that I never have time! Now I'm in the hospital and have a lot of time on my hands I thought I should do a little update :)
So.... I'm in hospital for 2 weeks of IV antibiotics as my lungs are struggling :/ I'm doing better now it's been just over a week and I can manage time off my ventilator and my pressures are back to my normal :)  I'm still  on a lot of oxygen and my left lung is still pretty  bad  but I'm hoping it will get better soon!  I had an NJ feeding tube  fitted and since I have had the tubes my lungs have been a lot better until now :/
Can't wait to get back to college to be honest! Get back to a bit of normality ( suppose IVs are normal for me now anyways lol)
There is one thing that annoys me so much! My local hospital was great when I was in children's and now I'm in adults the care  is crap unless in on the CF unit! Seriously I should not have to call my specialist in London - Brompton  to tell them to give me my 2 weeks of IVs and not 2 days??  They don't understand bronch and if you don't have CF bronch then you don't get the correct treatment ! Anyway my consultant. Sorted it out and my 2 weeks of IVs are sorted  but they won't let me do home IVs at the moment either ?!  -_- humph. Lol

Moan over and I'm ok so that's all that matters :)  so hopefully if my lungs are not fully  better after 10 days I'm gunna ask for home IVs  to finish the course and then I can be free from hospital!

Bye :)
Haha

Florida!

Sorry i have not posted for a long time! Been so busy and excited about my trip to Florida! I went to Florida on the 1st November 2013! I had the most amazing time and met some great people! Was deffinatly the best holiday ever! I was really well looked after and felt really safe and comfortable with the people i was with! I miss it so much after being with them 24/7 for 2 weeks! Words cant decscribe how thankfull i am for this chance as it was the main think on my 'before i kick the bucket list' haha and now i have done it! The charity is amazing and im going to be fund raising for them in the future so more people like me get the chance to go on a holiday of a life time! :) Anyways i shall stop boasting about my amazing trip!!! Please support the charity - http://www.nhfcharity.co.uk/

and here are some photos http://www.nhfcharity.co.uk/photos/index.php?sfpg=Tm92LTIwMTMvKiphZTU0NWUxMDAyYTJhMDRlYzMxYjE0NzRlNTIxNjUzZA
i have to put the link because when i put photos on my posts the blog website does not show them?? if anyone knows how to fix this please help! haha

Health update - most people (my family) use this blog and my facebook to keep up to date with my condition / operations! So here we go - i have been in hospial for 10 days (been out 1 week now) because the pesudomonus bacteria that lives happliy in my lungs (slowly destroying them.. haha) has now spread to my kidneys!!! Yes i know how is this possible?!! But it is becasue its the exact same bacteria with the same antibiotic resistance that  my lung bugs have... which made it really hard to treat :/  I have hard core IV antibiotics *dettol ;)* and it seems to have got in undercontrol now thank god! kidney infections are so painful!!! like double oramorph painful haha and it still throbs a bit now! But i finished my antibiotics on Monday so hopefully i will last until at least January without needing IV's for my lungs or my kidneys!!! I have had my date for my Op moved forward to try and help my kidneys out a bit so i having it on January 16th! Please pray i stay well until then!! Then i can get it out of the way!

I have the Brompton tomorrow and the ambo is picking me up at 6am! :( i have got to see my consultant and then go to the ward to get my port flushed which should be fine and a quick trip.

I really cant wait for Christmas! I cant wait to spend time with my family and friends and just relax and not worry about anything :)

So Thanks for reading!

Chloe

*may update if anything exciting happens tomorrow* haha

Life Really!

Hi :)

So when i last blogged i had lost my ability to swallow - and i still cant swallow anything -_-
I was so hoping it would be better right now, i had my swallow xray thing and i have moderate to severe oropharyngeal dysphagia :( but they are happy with me to keep trying to swallow as long as im careful. My swallow reflex is very delayed so the food / liquid just sits in the back of my mouth / throat and doesnt go down, so im totally reliant on NG feeds at the moment. I will be getting a PEG feeding tube in a few months if i have not improved but im going to work really hard in speech therapy so i can try and enjoy food again. The best thing that has come out of not eating is that my chest has never been so clear!! Seriously! Hardly any mucus and i hardly have to do physio anymore! Its amazing really! - cuz no food is going into my lungs!

You know what sometimes its tough being  intelligent, feeling your body fail you in different ways everyday really tests your strengh and will power, especially if no doctor can tell you whats actually causing all the diseases you have! Ok rant over ;) But yea i have not 'eaten' anything in over 3months now! I have another appointment in London on tuesday to see my neurologist which is weird because i was not supposed to see him until november but he rang and asked me come see im on tuesday - so i am a little disturbed by this - hopefully good news :/ i can only hope lol I had my usual bloods taken and my creatinine levels were low which show i have low muscle mass ( i would have never of guessed) haha and i have low blood count AGAIN - as usual, its never normal due to my immune defect. And thats about it really. I will leave you with a few pikks :)
 Me and Daisy :)

 Some of my meds.....
 Pink Med!!! :D

Bye :)

Back to College, back to reality...

Hi :)

So i started back at college on Monday, and its been great actually, apart from Lucy not being here! Its so weird and a bit lonley without my evil companion ;) My lessons are good, my class mates are great - they actually talk to me haahaa and are not totally freaked out! Which is cool :) I had my MRI results when i went to clinic and they said my muscles are very small/ wasted away and my worst affected muscle is my bum / pelvic muscles haha i have a tiny bum ;) And my calf muscles are so tiny and have been replaced with fat.... hahaaa 
My swallow is still not working, i had a video X-ray of my throat / swallowing muscles and the trigger that makes you swallow is not working properly so it doesnt trigger the actual swallow so food / drink just stays in the back of my throat and if i breathe while its still there then i will be in big trouble.... So i have not eaten anything in over 28days..... hard to believe i know!!!! i miss the tastes but im not hunry.... ever! its so weird, and weird to think i get everything i need in a bag of liquid or 2 everyday! Amazing what they can do these days!
On the down side i get waves of sickness hit me througout the day :( i feel so sick i have to stop my feed and breathe through it, its awful! But the plus side......................... since i have had my NG tube my lungs have been so clear its unbelieveable! I dont need my physio hardly ever! i used to have to do it at least 2 times a day for 20mins and now maby one huff in the day and thats it! (CFers will know what i mean!) Its kind of proved to me that food / liquids have probably been going into my lungs. The consultant wanted to put in an NJ tube to replace my NG tube ( a tube into my intestines instead of just my stomach) but i said no! Because in 1 month if my swallow is not better i will be gettin a PEG feeding tube placed and that would of meant 2 procedures instead of just the PEG one so i said i would just wait for the PEG tube. I dont want extra pain/ procedures if i dont actually need them!!!

Anyways thats all for now!!! Just want to wish good luck to Lucy and everyone starting Uni this year!

Chloe :)

Summer!!!!

Hi :)
So, since I last blogged I have settled into my new home for the summer really well! I have had a few ups and downs but i'm really happy here overall :) I have been out with my mum and sister and its been nice really :)
Of course my body had to go and spoil my summer holidays as usual... and nop, not with a chest infection but by the loss of the ability to swallow. They call it dysphagia (well thats what it said in my hospital discharge letter haha) So I cant eat / drink anything - even my drool -_- which upsets me a lot but im trying to not let it get to me and ruin my holidays :) I really miss food and its so hard not being able to eat, so isolating. Anyways here are some pictures of my new food..







So hopefully my swallow muscles will improve so I can eat again really soon, it better do anyway!!!
The rest of the summer I still have plans to go to the London dungeons, Rainforrrest café, and harrods oh and Legoland or somewhere like that with my sister :)

I also got my exam results back... I got 1A and 1D :( bit disappointed with the overall D grade but I got 2B's so I only need to retake one exam and I should have an overall B :) but I could of done so much better if I wasn't in hospital before the exam!!! grrr but I will be doing it again and getting at least a B! can you tell im a perfectionist!

Chloe :)

Summer Holidays and Tobi Trouble

Hello :)

So in my last post i was going on about how i didnt know where i was going for the summer holidays while i wait for my own flat, well im going to a Childrens nursing place in Hindhead. I looked round and had my assessment on Thursday and it was really nice :) the little kids are so cute! So i think i will be ok there, the staff are young and lovley and the nurses are really relaxed and kind. They have a swimming pool too ;) haha yay! So yea i hope it will be ok! I think it was a bit of a blessing in discuise not being able to stay at Treloars, cuz the ammount of other students staying has increased loads so i quite happy to get a break away.

I went to Brompton on Wednesday and it went ok, apart from they are taking me off my TOBI when my supply runs out they are not going to fund it for me - because i dont have CF and in Surrey they only fund it for people with CF. So even though i last cultured pesudomonus less than a year ago i have been refused my treatment because i dont have CF.... Its soo annoying beacuse i feel so much better on TOBI and i never get chest infections while on it! They said they want sputum cultures when ever i get an infection, the trouble is due to weak cough muscles due to my muscsle disease i cant get samples without a suction macheine so i have to now apply for my local PCT to fund me one- that will be fun!!! -_-  so yea really peeed off about that but i have a few months supply left so fingers crossed i can grow pesudo before it runs out lol as i have it all the time in my lungs anyways - i can taste it (i know its gross but my CF friends will know what i mean) So i hate my GP surgery right now! Wont bloody pay for something that makes me keep well!!!! Grrrr ok rant over :)

I got my immune system bloods back and my IGG levels have come up a bit since the steroids are out of my system to 4.3 i think, so they say i do deffinatly have a primary immune defeicney.... which we knew anyways. Ermmmm dunno what else to say really apart from the HEAT!!! OMG... its actually too hot to breathe! i need my mask a lot more and im sleeping all the time -_-  i feel like im 90!!! and a boring old fart but im actually to knackered to breathe, my oxygen levels are lower to - my lungs are really fussy, they dont like it too cold and they dont like to too hot - i can never win! It annoys me cuz i miss out being able to muck around with my college friends and i feel like im being really boring, but no one understand how hard it is to breathe in the heat and its effects on your whole body....................... moan over sorry!!!

So yup.... i am looking forward to the summer spending time with my family and Lucy and Wishing my Bestie Amy good Luck and have a great time away - it will be amazing!!!!

Chloe
XxxxxX

Prom, Sun and Summer

Hi

It was my college prom last thursday and after a long day out in London at the Royal Society i was pooped! But i had a great time with my Juicy Lucy :)


On Friday i had my heart MOT at the Brompton and it was really good! So only have to go back next year, so happy that its all ok and stable :) Just got to keep going with the warfarin and oxygen :)
Its the last few weeks at treloars with Lucy....  :( i am going to miss her loads!!

Now, the gritty stuff. The stuff i hate telling you about - the bad stuff!!! I can no longer get to my bedroom or bathroom in my house due to basically no muscle left in my legs / trunk and the balancing i used to do while mum / dad were lifting me is no longer possible. We could probably manage 1 day, if that so i am going to have to go into a care home........ My college wont let me stay with them even though they are open for 50 weeks of the year and my social worker is willing to fund my placement there with 24/7 nursing staff!!! I just dont get why they wont let me stay!!!! Anyways i looked round a home today and its really not for me! They were lovley but i would have no one to talk to and nothing to do, so im really stressed right now about whats going to happen to me.

On a positive note - its my lil sisters birthday on Friday! We are taking her out in the evening so that will be nice :) Love her and her weirdness... hahah

So yea a bit stressed but looking forward to the weekend with my family :)