Day 11

"..llo"

*ahem*

"he..o?"

this was me upon first attempting to speak to someone this morning. i realised my voice was missing and in it's place was a faint, hoarse, whisper that faded out mid flow.
no reason for this lack if voice. i woke feeling really groggy, i actually felt full of a cold but without the blocked nose. i just felt shattered, heavy headed, head achey and generally like a pooball.

doctors came round and infuriated me by asking 120 questions knowing i had lost my voice and so we struggled with the usual questions for about an hour. my voice was killing after straining what was left of it to answer the same old questions.
"How is your sputum?"
is still more than my normal and is coming up easy due to a tickly cough I'd adopted over the weekend.
"How is your chest?"
Feeling heavy as it's first thing in the morning and pre physio.
"How's the heart rate?"
I don't know, I've been asleep whilst they've monitored it.
"Any temperatures?"
Again, i don't know, i have been asleep whilst they've monitored it. *shouldn't they check the nurse notes?*
"Anything new to report?"
YES i have no voice!!! I'm not just being rude answering these questions in a half broken whisper for you to ask me to repeat myself over and over for the shits and giggles!!

Bloody junior doctors, i love them but just not first thing in the morning when i have woken up feeling like a pooball. They're the last people i have any patience for :( ...sorry guys <3
You're doing a great job, keep up the good work, just pop round to see me after lunch when i am more none zombified!

Last Fridays conversation started by him first shaking me to wake me up for me to squint at him with one eye open and say bluntly, "what?"
hahaha.. i am too funny.

His reply was, "how's your sputum moving today?"

..... i kid you not.

I said, "my sputum is not moving today YET as you've literally just woken me up. I was quite clearly asleep and therefore, have not moved no sputum today"

Doc: "ah i see, so how are you feeling today?"

Me: "i feel like i just woke up and i am still tired"

Doc: "but it's 10 o'clock.. i thought you'd want to be up."

Me: "i had a ridiculous tickle that kept me up till early hours, regardless of that... what do i have to wake up for today? I'm not going anywhere or doing anything today other than staring at these four walls!!"


The little rascal was quite clearly off his head that Friday morning! Get off the laughing gas you crazy doctor!


Ahhh.. good news? My voice eventually made an appearance as the day went on and it's not back in full swing. Sore throat and tickley cough still present though.

Don't know when my date with the consultant will be regarding the chat about transplant referral but i have been thinking about questions to ask.
I won't lie.. i feel like most of the questions have been answered from previous little chats and also by reading blogs of other CF patients both pre & post transplant. So the only questions i have come up with seem like silly ones but are genuinely the only ones i can think of.. :(

1- will i still need such a high calorie diet post transplant?
2- will i get to keep my port-a-cath for 'just in case' need of IV's post transplant?
3- general curiosity, how many patients on this unit are awaiting transplant?
4- general curiosity again.. how many patients from this unit got "the call" last year?
5- general curiosity again.. (Bit morbid but I'm curious) how many patients didn't make it to "the call" last year?
6- what are the usual tubes & wires i should expect to wake up with?
7- I'd quite like to see a diagram of the lungs.. just to then be explained how they do the actual transplant procedure.
8- when will they be making the referral?
9- how long does it take to find out if you make the mark to be put on the list?

That's all i got... some of them seem silly to me but they're genuinely things i don't know that i just wonder :')

Think i will have a chat with some people like mum, dad, emily and see what questions they can think of too. They might have questions they want answered or have ones that i just haven't thought of that would be good to know.

Going to write them down otherwise it'll get to the, "any questions?" part and I'll just sit smiling and shaking my head!


Okay that's it for now as i am a tired ted tonight..


Day 11:- texture





This is a hot bubbly bath run by my papa for me when i was poorly before i came in hospital and he used a beautiful, yummy smelling bath bomb from LUSH <3
They're stuff is amazing and leaves your skin feeling so soft and nourished. That's why i decided to choose this picture for day 11's texture picture.



Night night bedbugs..

Sophie xoxo
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Day 10

Happy mama day to all the mama's!!!! <3


Hectic week!
Lots and lots of things happened and went on.

Excuse my spelling and grammar, still no Internet on my laptop so using an app on my phone and auto-correct gets on my nerves and changes things without permission and I'll be on a roll to stop and go back. Thank you!

What's new?
I have started beater blocker tablets to slow my heart down! Sounds abit crazy but my little ticker gets to excited and gets carried away with itself. i think it is just trying to take one for the team and over compensate for my lazy lungs which are taking their sweet time to improve!

I am considering myself lucky that they are getting better.. i consider myself a lot like a turtle and as you all know i love them. I guess my lungs just want to take it nice and steady with their recovery too which is cool by me so long as it's a good recovery; but these four walls are getting pretty boring now!

Also another new thing is pretty major and don't think I've mentioned it on here for a while but it has been mentioned alot over the past 6 month and more so over the past few week this admission...

T.R.A.N.S.P.L.A.N.T

okay and breathe!
so it's been a word that has floated along side me in this sea i just bop along in. every so often a doctor has thrown it in to conversation as a little reminder that it's not gonna go away! ha.
I just had too much stuff going on over the past 6-7 month to even consider getting my head into transplant. My heads been in another world for 6 month and it's just come back onto earth more recently. So i have had a few things i kept putting the talk off with. I didn't realise it before but i know now that i have been the one secretly and subconsciously putting this talk off the past few week.
Having a conversation with one of the doctors today he brought it back around and asked when i was going to chat to one if the cf consultants about 'future plans and decisions' he then reiterated himself by saying, "and by that i mean transplant!"
thanks for clearing that up doc ;)

i sat there and my mouth said, at some point this week while my head said, "pardon?!"
and then i had a word with myself in my head and two little turtles had a chat.

One was very avoidant and dismissive and the other realistic and blunt.

It dawned on me that i have a problem.
Panic is sitting in my head and please forgive me if this sounds absolutely crazy. Let me just re-assure EVERYONE (mum & dad)
That i am most definitely wanting a transplant!

I suddenly thought, how am i gonna do this?
Transplant sounds crazy & scary now it's so indefinite.

Not only that but say.. 'hopefully' i do get a transplant and i get to live as close to normal as I'll ever get.. what will i do with myself?
I don't actually know what i want from life.
What job or direction or anything.
I have my basic GCSE's and that's all the qualifications i have,
I just think i'll be lost post transplant. I know who i am right now, i know my limitations, i know my place, role and responsibilities right now. I don't know who or what i will be if i am lucky enough to get that greatest gift of life.

I'm worried this is coming across bad.. believe me it's something i would be eternally great full, appreciative and respectful of but i often wonder what it must feel like going from chains and shackles to being set free.

Obviously the most obvious worry is, the wait. Feel like once i am on that list.. the egg timer turns and it's just a downward spiral till that call comes. I know regardless that the downward spiral comes whether you're on the list or not and I'd rather give myself that chance. it's just like a certain "yes, you really are that bad that this is the best option now"


I had a plan in my head about post transplant.. yes i am a wishful thinker ;)
Anyway.. that plan changed without me having any control about the beginning of October last year and suddenly i don't have a plan anymore. How dare you take my plan!!! grrrr!!!

This quote i found describes the feeling very well:
"Much of the pain we feel in life comes from having a life plan that you've fallen in love with; when it doesn't work out, you become angry that you now have to pursue a new life plan.
If you want to tame your inner demons, you must not come too attached to any particular life plan, and remain open to the idea of an even better, happier life plan"

So maybe me not knowing what i want or where i go or what i'll be is the best thing?
Lets hope the best is yet to come eh?


Day 10: favourite drink!




I am partial to a hot ribena however of course those of you who know me atall will know my favourite drink is irn bru!
Gotta love that fizzy orange goodness.. Yum <3


Sweet dreams my bedbugs <3

Sophie xoxo
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March.. DAY 3

Heart rate was so much better today.
Doctor Roland still wants me to see a cardiologist though. Looking like i am in it for the long haul this time, chest is still pretty rubbish and i am at the end of two weeks. Now the sputum is stuck and the amanophylinne drug that helps me shift it all isn't allowed to be given to me till we sort something out with my heart.

I hate the thought of it all just building up down in my lungs though. Gonna talk to my physio tomorrow, she makes me feel better about this stuff.

Had tons of visitors today, a very wheeler orientated day with my mum & emily thrown in for good measures! :)

My cousins lyndsey & christian came to see me and had me giggling away at the silly things he does when a little worse for ware! He is on his 8th week off the cigarettes. He just uses those electric ones now which provide the nicotine to ween yourself off but it's without all the nasty chemicals, tar, smell, health risks and horrid smoke! They're a brilliant idea and must make quitting just that little bit easier!
Now he's very much against smoking! He's joined my cigarette haters club! haha. I am so proud of him :)

Next up was my uncle neil, ella & jojo! They came with sweeties and very interesting conversation that had the biggest random range you've ever heard. One minute, heart rate and diabetes, the next minute death row and torture!
All i can say is.. don't cross Joseph wheeler with his potatoe peeler!

My dad came with chelsey and brought me McDonald's for tea and then i gave him a ukulele lesson. He's doing good with it :)

Well today's picture is supposed to be "kitchen" but this room is like a bedsit so thought i would give you a view of my mini kitchen area!

DAY 3:- Kitchen - Hospital room!





The fridge is filled with chocolate and drinks and the cupboards stocked with sweeties and crisps! :)

What more could you want?!
Also have a kettle for my hot ribena's!
Night night bedbugs..

Sophie xoxo


side note: wrote this last night and didn't publish it! so stupid... here is day 3 on day 4! Day 4 up tonight -xo
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March- DAY 2




Got bored and decorated the sign for my hospital room door :)
Think it is very me.. Even put a little turtle hiding in there somewhere!

i had such a lovely day planned and it kind of went a little not so smooth!

i have been having major issues with my blood sugars as they put me on steroids.
long story short, we stopped the steroids starting from today but still had a bigger dose of insulin last night covering for yesterday's pred (steroid).. that increase of insulin was no longer needed though really as i wasn't due to have anymore steroids this morning so my sugars continued to drop..

Needless to say, i woke up sweating, shaking like a leaf and completely incapable of acting like a sober human being.
i pushed my buzzer as felt dead to the world for the nurse to check my blood sugars, slurring the words, "i feel low, think sugars are low"
i also at somepoint text my mum i let her know i was feeling weird which came out like this...
"Argh!! I feel daakky weids x"
.... second attempt was,
"Blood sugars low and i feel really sweird xx"
I don't remember sending these texts :S
I had literally just woke up :') haha.

My blood sugar was 1.7 and i drank two pots of pure orange juice and had a digestive biscuit! My blood sugars rose and i was more human :)


Next up was maccies brekkie with my cousins emily, paddy, tom & steph.
We had a sing along with ukulele and then as they morning went on i found myself hyper ventilating.. i thought i might have been having a little anxiety attack so did my usual routine of stroking my arm and focused on relaxing my breathing and it worked but not for very long.
I decided to keep my oxygen on when i coughed and began to see little dots in my eyes. I was sat dodging what i thought were little midges but they were just my head being silly.
Stupid me didn't think to push my buzzer and inform a nurse so still sat with my oxygen having these mini 'anxiety attacks' dodging 'midges!'


i-d-i-o-t!


It was dinner now and my mum brought my gorgeous godson Alfie to come and see me and show me his very first Peggy!
The cheeky boy pulled my oxygen mask off my face and let go of it so the elastic snapped back and the mask smacked my face!!
Little rascal.

My dinner came and i was still sat on my oxygen breathing very harsh, fast and sharp. Struggling to eat and getting really flustered and red, my mum pushed the buzzer for the nurse to come help me. Blood pressure was fine, oxygen levels were good at 96 but my heart rate was 150 and all i was doing was sat in bed.
The doctor wanted an ECG and then told me and my mum that i was tachycardic (high heart rate) which we knew from my pulse. He stopped an IV drip that was running through as it's a bronchodilator which can cause your heart rate to be elevated slightly so it wouldn't have been doing me any favours.
He wants me to be referred to cardiology just to see what they recommend.

I've had these episodes a few times before but this one felt worse and more out of control.

Think it must have just been the excitement of all my visitors and of course the best hash browns on the universe.. McDonald's <3 br="">

DAY 2:- morning!




Yummiest part of my very busy morning :)


Hopefully today will be a much calmer day :)


Night night bedbugs...
Sophie xoxo
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March... DAY 1

white rabbit.. white rabbit.. white rabbit!
Here is march's photo a day challenge 2013





is it really the beginning of yet another month already?!
where does the time seem to go? flying by and it just seems to be going faster and faster!


i had a crazy mental moment earlier on today when i realised i am closer to being thirty than i am a child now! i know i am only 19 and have 10 years and 4 month left but still.. crazy thought for someone who has Cystic Fibrosis.

When i was born the 'average' life expectancy of a child born with CF was 16 years old. Now it's mid 30-40's meaning i should be hitting my midlife crisis right about now ;)

HOWEVER modern technology and medicine is absolutely incredible. there was a time adult CF units just weren't needed, children didn't make it to there 3rd birthday and they were classed as the 'lucky ones' that did.

These days they've found a new drug that i am not 100% clued up on myself so please don't trust me or quote me on this..

There are clinical trials taking place on a drug called kalydeco. it's a drug that helps repair the faulty gene that causes Cystic Fibrosis. The damage already done will never be undone but if it is something that will prevent further damage.. it's incredible. I have heard so many amazing stories about people on the trial. let me make one thing clear, in Cystic Fibrosis there are thousands of different faulty genes.. just like there are thousands of strains of the common cold. Kalydeco is currently being trialled on one of the faulty genes causing CF. It won't work for us all but it's a huge step in the right direction for something to work in the future for the rest of the genes.

I don't know what my gene is and should probably be clued up on the specific genes but if i am truthful with you all, it's not something that sticks well in my head. i think it is so varied and complex that i just don't feel the need to know all the details. When my name and numbers called to give a wonder drug a try; I'll have a more detailed look then.

Meanwhile.. I'm good loving the life i live. Wise words off an old friend.
If you're interested in reading a blog of a patient from my CF unit at Wythenshawe please give this link a copy and paste (if not working directly)
I'm sure he won't mind you taking a nosey. Please have a read to see just how wonderful this wonder drug is! I'm so please it seems to be doing the job for you Woody!
songsfromtheid.blogspot.co.uk


DAY 1:- clock




One of my favourite time of day. Dinnertime!! Today's dinner consisted of a veggie full brekkie! Toast, beans & 5 hash browns.. Delicious!

Today i learnt a few songs on my ukulele which i have named billy bob <3 br="">He is wonderful and i am feeling pretty damn pleased with myself at my achievement of learning "somewhere over the rainbow!"


Night night bedbugs..
Sophie xoxo
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DAY 28

Well i finally got myself a bed in Wythenshawe. I have actually been in a whole week now and i am only just starting to feel human and able to breathe again. I felt absolutely awful before coming in so very appreciative that they managed to squeeze me in when i came to clinic.

I think the doctor didn't even have to ask how i felt when he walked into the room, took one look and thought it would be okay to tell me how awful i look! CHEEKY!


Needless to say, i wasn't able to do my lung functions as i immediately started coughing so didn't even budge it above 0.4! which is crap!

I was having some chest pain but the steroids have sorted that out and now it's just getting rid of the silly little sputum the mild bout of pneumonia has left me with!

I don't know if anybody else goes this way when on steroids but i have noticed i struggle to get to sleep at night, i am so very irritable and angry at the world and i also can. not. stop. eating! the last one would be brilliant if my blood sugars that are normally ranging between 4 & 8 are now flying high in the 20's all night long. maybe that's why i can't sleep?

Major sugar rush - minus the sweeties :(

Don't think there's anything else to report as far as costa del pearce is going. Bought myself a new ukulele to keep myself occupied and it is BEAU-tiful!




Say ello to him <3


Well i missed a few days but we're having problems getting my laptop onto the Internet. Password for the wi-fi just won't work and typing this blog out on my i-phone would drive me crazy having to correct the auto-correct all the time!

So i had a little holiday- recovery period but here are a few photo's i would have used had i been online....


DAY 9: comfort:- I'd have chosen my eye mask that i sleep with. love falling asleep in the pitch black!




DAY 20: in my pocket




DAY 21: eyes




DAY 22: Handwritten:- i'd have chosen this to-do list which i blurred as it's my private to-do list with things i want to work on myself with.




DAY 23: favourite thing:- i love turtles!!




DAY 24: listening to..




DAY 28: i ate....




just so tasty!


Sweet dreams bedbugs..
Sophie xoxo

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