it's friday


it's felt like such a long week this week. had a few appointments which have gone very well.
started a little regime that i really hope i actually stick too, it's hard though and my muscles are screaming today; let me tell you. had some tea at my mums. done SO MUCH SHOPPING, both online and my favourite type of shopping, food shopping. used my wheelchair three times only whilst out and about. looked after roxie (the little yorkshire terrier we used to have) while my auntie who looks after her now went on holiday. finally, ate a lot of food. i think that is just about it.

i have just gone looking at my "to-do list" page and i have managed to strike 3 things off today, which was quite exciting.
okay so first thing i scrubbed off was 'i want to bake soft chewy cookies like dominos' … i am not gonna completely tell you a lie, but they aren't exactly domino's standard, HOWEVER.
are they soft? YES.
are they chewy? YES.
i'd say job done, wouldn't you?

next to be scrubbed off was, 'i want to get at least one month without needing IVs' … i am very pleased to tell you that as of yesterday it has been 4 whole weeks since i got discharged from my last admission and i am still going strong off IV's. okay i might not be doing this alone, i have a little help off the oral antibiotics i have been on for the past two weeks but even that is still bloody good going for me. the relationship between me and the oral antibiotics has been very rocky. we have battled with on and off sickness and vomiting but we're still together; we're working through it with some counselling off some anti-sickness and i think we'll make it.
i had my CF clinic appointment on Wednesday and it went great. 4 weeks down and my weight is still stable and good, my diabetes is under the best control it's been in a while as an outpatient and my chest is holding up good too. i was asked what i think has done it for me and i can't put my finger on it but i can only assume it's a combination of a few things really.
1. the time of year could be a factor, there are a lot less virus's and bugs creeping round and the weather being warmer could also be beneficial for me.
2. i had a terrible 2 month admission back in May and i was totally dependant on NIV. it was really scary for me, i was coming up to a year on the transplant list, i'd had no false alarm calls and to take such a huge decline rapidly was devastating and frightening. i didn't know if this was how i was going to be until that call came and at one stage i was wondering if it would come and would i be well enough to have it even if it did. i very slowly got better and got my strength up just in time for my birthday and the massive celebration and since then i have kind of got myself into a regime of NIV overnight and oxygen all day every day. i think coming to terms with that rapid decline has helped somehow. they say having the right frame of mind can impact hugely on your overall health and i really do agree with that.
3. the doctors never usually put me on oral antibiotics, they were adamant that they don't work for me and deep down i felt they didn't either but for whatever reason. the past 2 admission breaks out i have took orals in-between and they're working. they'e keeping me out and well enough to stay out.
4. keeping busy. when i sit here and think back on my week i actually don't do as much as everyone else does. i obviously don't go to work every day or have children to stay home and look after or my own house to cook and clean in with a long list of daily day-to-day chores to fulfil but i have my own little schedule that is very health consistent but it keeps me busy for the majority of the day and then i am free to arrange and plan my late afternoons and evenings.
i am not a morning person. i have never been and probably shall never be but i have recently preferred to be waking up by 9 or half 9, from there i sit myself up have the usual morning wee, get back into bed and on the NIV and if it hasn't already started from the short walk to the bathroom then it's time to get the sputum going by coughing it all up! this is done by doing some different breathing techniques through my NIV. i usually watch youtube videos throughout the morning of physio. next it's time for a few nebs whilst watching youtube. by the end of nebs we're probably looking at 11-11.30, this is the time i like to come off the NIV because i have found that if i stay on it past half 11 it makes my chest feel sluggish. i think my lungs get used to the support and so after a certain amount of time they become lazy. i could be very wrong but that is just how it feels to me. so once the oxygen is on and NIV is off, it is time to arrange my tablets for that day and take my morning dose of insulin. i then do make-up and hair. it doesn't take me very long at all for these things. i only wear eye liner and mascara. no foundation or primer or concealer or eyebrow stuff or highlighting things or bronzer or eye shadow and lipsticks. i do curl my eyelashes though because they point down otherwise. so a line of eye liner and flick of mascara and my hair usually goes into a little messy high pony and that is me good to choose something to wear.
i am comfort over fashion so i usually throw on some jeggings, vest top, t-shirt and zip-up hoodie or cardigan with my navy blue converse. i throw everything i could possibly need from upstairs into my MASSIVE bag and trundle downstairs in time to make my dinner as it is now usually bordering 1 o'clock. After making lunch and eating lunch and cleaning up afterwards we can be talking 2-2.30 and then it's time to make some plans for the late afternoon and evening.
i am rarely at home from 4-5ish till 8-9ish.
that might sound like a leisurely day for everyone but i am literally pooped and achey by 8pm; i do definitely think it contributes to keeping me well and out of hospital though.

the next thing i got to scrub off my list was, 'i want to dress like a 1950s girl'.
for my 21st birthday i got to throw a 50's themed party that was fancy dress and we had 50's and 60's music playing all night. a hot dog and popcorn stand and a jukebox birthday cake. we had it at a place in Oldham called "The Limo Lounge" it was 100% everything i could've asked for. the set up of the venue was perfect and i would highly recommend for anyone living in and around oldham and looking for a venue for a function.

i am thinking about leaving it there for today as it seems like a big post and i don't want to bore you more than i probably have done.
not to worry though, i will come back soon, i have said it before i know a thousand times and i am always a let down but i do want to try and be a regular blogger.
it's quite refreshing to chat out everything that comes to mind and i also realised yesterday that my memory is so bad. maybe if i jot things down more i will actually remember stuff.

well thank you for having a little nosey.

new lungs?.. i'm ready for ya! ❤️

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all grown up.

i started this blog when i was 15 years old and in year 11 at school. 
i was studying very hard for my GCSE's, recovering from my lobectomy and enjoying the last few months of school with my friends. i planned on going to sixth form, going to Huddersfield uni and becoming a child psychologist! i wanted to be a primary school teacher but infection risks are a little too high in that profession for someone with my illness. i could walk miles without needing any stops to catch my breath and oxygen at home was something i never even knew was a thing people needed. i love sweets and could eat as many as i damn well pleased! i had 6 best friends, emma, Aimee, chloe, shaun, pippa & becky. i wanted to learn sign language. i loved spending my evenings on msn chatting to my friends from school. i thought i fancied a couple of people but that was completely new to me having never had a boyfriend or even been remotely interested before. i could not flirt to save my life. i wrote in this blog daily! i had home IV's which my mum did for me every 3 months for 2-3 weeks. i could do the excercise bike on level 3-4 for 15 minutes none stop with no oxygen. i had been to tons of wedding but no funerals. my favourite book was the host by Stephanie Myers. my favourite film was 50 first dates. i only needed 4units of slow acting insulin a day. Blood sugars range from 4-7. I had never had a hypo or high blood sugar! i had no idea how i want my future to be. i loved my life!

i'm now 21, i have 6 A-C passes in my GCSE's, i got..
A = English
3 C's = Science
3 C's = ICT
D = Maths
D = R.E
F = History
G = Geography
i dropped out of college after 4 months due to my health taking a huge decline! i have never gone to uni or had a job. i am oxygen dependant and can't walk from one room to another without getting very out of breath on oxygen. i use an NIV to sleep on to help me breathe and my carbon dioxide levels normal. i am now not allowed to eat sweeties anymore :(
i have been engaged for a month and a half to one of my best friends shaun! i still can't flirt to save my life. I've only had two boyfriends and that includes shaun. i have one other best friend emily. i am learning sign language at the moment and can so far sign the basics; including, the alphabet, numbers 1-100, basic greetings and colours. i love spending my evening curled up on the settee at home in my pyjamas! i rarely updatet this blog! I have IV's in hospital now every 3-4 weeks for anything from 3-6 weeks. however my last admission was only 2 weeks for the first time in over 2 years! i use 15 litres of oxygen to do 2 minutes on and a minute rest at level 1 on the exercise bike and that is so hard some days!! i have still been to lots of weddings but have now been to 3 funerals. my favourite book is the fault in our stars. my favourite films are 50 first dates and the fault in our stars. i now need a variable (depending on carbs) amount of fast acting insulin with everything i eat and have 20 units of slow acting insulin in the morning and 28 units in the evening. high blood sugars are a regular thing on my admissions and hypo's feel disgusting! my highest blood sugar has been 29.8 and my lowest 1.5
I've been on the transplant list for 1 year and a month! i know exactly how i want my future to be.
i love my life so much more than ever right now :) 

my 21st birthday was incredible. everyone made it so very special for me and i shall always be thankful and appreciative of that. 
plus.. I'M ENGAGED!!! :D 
no wedding plans as of yet though, i like how we are right now & we have a huge amount of saving to do yet!
i have just gotten out of hospital and i'm currently feeling the best i have felt in a while.. long may this feeling continue!

i just felt like writing a little blog after reading my very first post yesterday :)
felt like a little comparison would be pretty good! here are a few photos ....

new lungs?.. i'm ready for ya! ❤️
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hey stranger

it's been a long time.
there has been a lot of things going on.
there have been lots of thoughts in my head.
there have been lots of emotions felt.

i think i have figured it all out in my own mind now :)

after the last admission i went home and i really struggled, more than i ever have before.
i felt so breathless just at rest that i wanted to put my oxygen on so i kept that on 24/7 apart from when i went to bed at night, that's when i would swap to my A40 NIV machine.
i was sleeping so much, i just felt so tired. i needed help doing most things, washing my hair, making food, walking up stairs, going to the loo, taking myself places, i rarely left the house. when i was coughing it felt like i was suffocating, i just couldn't get the breathe in that i needed whether i was on oxygen or my niv. it was awful and scary.
i was waking up in the mornings feeling like my head was on another persons shoulders, nails blue and sweaty!
i bought a sats monitor a few days into feeling like this. i was absolutely devastated to find my sats were dropping to a scary 57-65 at times and sitting mainly at 82-92 on niv and oxygen. my sats are usually 94-96 on air and 96-99 on oxygen or niv.
i went to clinic but was given the go ahead to continue at home as my chest was okay and we didn't feel that IV's would improve me. We wondered whether this was the next stage of my decline or aftermath from a virus i had on a previous admission.
we hoped for the latter.

a few days later and i was feeling worse, i was sleeping most of the day and night, trying to eat but giving up half way through due to it being too much effort and relying on everyone for every little thing. i was absolutely gutted, i knew this was how i was going to be.
one night i was home alone and got bored so after cooking my tea, i made cupcakes and then ate my tea, as i stood up to wash my empty plate.. i just felt this wave of awful, strange weakness & pain flood my whole body, i went dizzy, my heart raced, i gasped to try to catch my breath & dropped to my hands and knees dropping the plate with me.. i crawled to the front room to pop my oxygen on & check my sats, 47 & heart rate was 187.. trying to stay calm i lay on the settee with the oxygen blasting in my face. it was my own fault for getting cocky, i had been having a good day and so thought i would spend the evening without oxygen, i cooked tea & cupcakes and wasn't breathless so continued doing the odd bits & bobs but it obviously caught up with me.
i soon recovered once on the oxygen and from that day i never took my oxygen or niv off. having a heart to heart with my dad a few nights after, i cried to him and told him that i was scared and disappointed with how i had been the past two weeks. the next day i called for a bed and was taken in via clinic.

settled into my room, i felt happy in the knowledge i was where i needed to be.
thats when the fun & games started.

i woke up coughing & literally choking on my sputum, the nurse came running in along with physios, i was put on high flow 35% oxygen & the V60 niv machine, that episode lasted an hour, my sats stayed in the 50's the entire time & by the end i felt so exhausted that i slept all morning till the afternoon. the next day the same thing happened three times, i was given a little morphine to help with the breathlessness & the anxiety. these episodes continued randomly for a while but they were getting better, i was able to get control back sooner rather than later and i didn't need the morphine anymore.

i have been in hospital for 4 weeks now and have only just started having an hour a day off the niv and on 10 litres of 28% oxygen :)
i was struggling to have 10 minutes on oxygen this time last week so getting an hour or so is a big achievement for me.

it's been a bumpy admission with different things happening and blips popping up here & there but i think things are finally in the right direction now. my biggest problem at the moment is my blood sugars. they have been running at no less than 20, normal range is between 4 & 7. no amount of insulin was helping and my appetite isn't the best so can't blame it on an abnormally good binge of food.
so today they put me on a sliding scale. it gives me insulin every hour and the amount of insulin is dependant on my blood sugars.
this will give us a good idea of just how much insulin i am actually needing right now to cover whatever the reason is to them being so high. so far so good :)

i have been told off my physio that i will be needing oxygen 24/7 now but i had come to terms with that over the past month. it was just a big shock for it to happen literally overnight & i'll have to get used to doing my daily stuff at home with oxygen coming along for the ride too, it shouldn't take long :)

i have just had liquid oxygen installed at home as the usual portable ones weren't even lasting me a couple of hours out, then you have to wait for re-fills to be ordered & delivered which can take two days and god help you if you run out on a thursday afternoon or friday. you're housebound for the whole weekend. thankfully, liquid oxygen can be filled by myself and they last longer too. perfect!

well.. my aim is to have two more weeks in this place and get myself as good as can be in that time to have my 21st birthday (9th of July) at home & my 21st birthday party (12th of July) too. The party is 1950's theme and i can not wait for it & to brag about it afterwards. expect a blog solely dedicated to the event after the 12th of july :)

i think that's enough update for now, it's very late & i need a sleep.
i am gonna try to do an update on my transplant situation soon too :)
were getting close to it being a year since i was placed on the active transplant list.
come on new lungs.. i'm ready for ya!!
i'll treasure you & take such good care of you, i promise <3 p="">
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day 5

day 5: not mine

the radox bubble bath i used in my bath this evening is not mine. i borrowed some to soothe my aches. i love a hot bubble bath when it's dark outside and your music on :) 
absolutely wonderful <3

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April Day 2

today has been a real struggle. i have barely been off my oxygen all day and when i did it was so hard. as if someone was covering my nose & mouth whilst I was trying to breathe. i had extra inhalers and salbutamol nebs to see if they opened me up but they only have a 5 minute relief and then it came straight back. my chest is okay, there's no infection and i am hardly bringing anything up which is normal for me but I was slightly wheezy which isn't normal. i went to my aunties for tea but came back earlier than i anticipated due to needing oxygen and just not feeling comfortable because of that so i drove home, fell into the kitchen gasping and dropped my coat and mittens on the table desperate to get to my oxygen and that's how i have stayed all night. it's definitely gotten worse since going outside. i'm not quite sure what's going on so gonna give myself another day or so before possibly calling my cf team just to double check with them. for the time being lazy days on oxygen in pyjamas sound like the best course of action. a few people have mentioned about this air pollution so maybe that's contributing? I guess time will tell :) 

Day 2: in my hand

i completely forgot to do this today and i just remembered last minute so grabbed my phone and all i had at hand was nothing at all. then I remembered something i think is quite random and unusual. i actually have a freckle in the palm of my hand near my little finger and ring finger. it's only small and quite pale but i have had it for aslong as i remember so must be a freckle.
i think it's quite unusual to have a freckle there isn't it?

i'll be better prepared tomorrow :)
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April photo challenge.

i have been out of hospital for just under a week now. i've kept up with my feeds except missed one and have been going on the bike each day on level 1 for 15 minutes. my legs are killing so it must be doing something good if it's feeling bad :)
i just hope the hard work pays off and i have something to show for it when i go back in hospital in a couple of week. for now though, i have lots of plans to keep me busy & occupied. i try to cram as much into my weeks at home as i can before i head back into hospital for the usual 3 weeks stints. so much to do and so little time, haha. 

Ages ago, i did a photo a day challenge and i really enjoyed doing them, they have me something to do in the days and got me taking photos which i always say i never do enough. So i thought i would give this a go again!
April photo-a-day challenge.

day 1: something purple

this is my gorgeous CF bracelet made by Katie Gammon. 
Katie makes these bracelets and some other ones herself. i think they're so pretty and katie is such a lovely girl. she also has cystic fibrosis and received her amazing new shiny lungs after having a transplant last year. she's currently back in school and revising to sit her GCSE's after missing a huge chunk out of school due to ill health, transplant & recovery. all in all, she's doing amazingly well with a few bumps along the way but still as determined as ever.
i shall post a link to her Facebook page where you can browse through her bracelets and maybe buy yourself or a loved one a gorgeous purple CF bracelet :) 

Thanks Katie. 

Katie Gammon's blog:-

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National Lung Allocation System Campaign

Last weekend, i wrote a status on my facebook saying, "more awareness is needed teaching the basics of transplantation and organ donation. the lack of knowledge in the general public is improving but it is still not where it needs to be"
I said this because i had just been commenting on a status where someone shared there opinion and others where throwing in their two pennies worth but there was so many wrong "facts" being thrown about and i couldn't sit back and watch these people mould their opinion and views around things that simply are not true or the way things are. 
So i stepped in and corrected them on things, i wasn't aiming to change anybody's opinion but just wanted them to know how things actually are. 
I don't know everything there is to know about transplant and organ donation myself but i knew enough to point these people in the right direction. 
The biggest misconception that i somehow couldn't get them to understand was that CURRENTLY there is no "priority" when allocating lungs to people on the NHS active transplant list. 

I don't know every single thing it goes off but i do know that depending on where you are at the time the call comes in determines whether you are to have the donor lungs or not. The closer you live to your transplant centre, the higher your chances of a call are. This Might mean that some poorlier patients are missing out on an opportunity they're in desperate need for just because they live further away than someone of the same blood group and size etc. 
This is why the Cystic Fibrosis Trust is asking the public to take part in a campaign calling for a fair national allocation system for lung transplants. Hopefully it will allow people on the waiting list for new lungs to be treated purely according to their need, no matter where they live in the UK or how far the hospital is. 

Due to there being no national lung allocation system, lungs are immediately first allocated to the closest transplant centre and in some cases this isn't the individual who needs it most at the specific time. So the CF Trust want everyone to follow a link, join the campaign and help to raise this to the government. 

I think the link is worth a look and you can make your own mind up on the matter.

Once you've read through the page, there's another link you can click on that says, JOIN THE CAMPAIGN.
you can then send an automated email to your local MP. You can add your personal touch or story to the email or you can fill your name & address out in a form and click send to send an automated email written by the CF Trust.  Easy Peasy!

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dear daughter... journal of a lifetime.

for christmas 2013, one of my dad's gifts was something called "dear daughter.. a journal of a lifetime" 
it is a hardback empty book that contains around 60 questions that are there to provoke a memory, a story, an idea, a thought.. basically an answer.
i fill the book in and give it back to my dad once it's completed and he can keep it forever to look back on or to share :)
i thought it was such a lovely idea and so cute. 
i think i thought it was going to be easier to complete than i am finding it. 

some questions are so thought provoking and i want it to be absolutely perfect. I also have a tendency to go on and on.. which is a little problem when i only have one small page per question. Baring in mine these aren't your simple questions such as, favourite colour, band, song, date of birth. 
for example i'll tell you some of the questions and my reason for contemplating so much on what i'm going to write. i've bought a notepad to write everything out first before writing it into the book. page after page has been ripped out and tossed into the bin as of yet. 
here are some of the questions :

  • "tell me something about yourself that nobody else knows" - sounds easy right? WRONG! i am a very open person, i'm not private and i don't keep things tucked away safe inside my head to build up on me.. i open up and if not on here to everyone then to people i am the closest too. failing that; things that are supposed to be kept top secret are usually things you shouldn't have done with a friend or sibling so i have deemed this as one of the impossible questions!
  • "what's your earliest memories?" - I HAVE THE WORST MEMORY. honestly, so far my earliest memory happens to be in reception and from that point i remember nothing except a few fragments from school and even those are things i can't be 100% sure on whether they're actually my memories or things people have told me or i've seen on old videos and pictures. i'd say the age of around 12-13 is when i remember chunks. that's dreadful for a 20 year old girl! why is my memory so bad? 
  • "where did you imagine your life to be at this point, have things gone to plan?" - NO. things have not gone to plan. hahaha
ahh it's not as bad as i'm making this out to be. i'm having loads of fun with it.. i just find myself coming to a standstill with some of them. i even find myself thinking so much things. it really has made my head whirl with thoughts, i've been in hospital for 2 and a half weeks and every nurse has commented on how quiet i've been or that i haven't been myself and theres nothing wrong.. i'm just daydreaming and in my own head so much. 

i have jumped ahead of the book for a change and i'm in the section "future you" 
for a long time, a good few years i have really focused on right now. i put off transplant for years and years because i was certain i could do something right now, i didn't want to look to the future and think "without transplant how long have i got left?"
last year when i decided transplant route was what i was going to go through with i had to, i had to look at the past and admit that there has been a big decline over the years even with improved treatments and compliance and added bits & bobs like niv, feeds etc. i had to look at right now and decide.. this is not what i want to do at 20 years old. i do not want to live my life dependant on fortnightly IV's, oxygen, feeds, costa del pearce, mum & dad. 
i want my own life. 
which brings me to where i'm actually going with all this.. 
future me. 

my auto-pilot answer for what i want to happen in the next 10 years is: successful transplant & recovery, little rented house, car, sweet shop, happiness, marriage or long term relationship preferably with shaun, who i'm with now. 

honest answer: i want to be healthier than i am now, i want to be happy, i want to be earning money, i want to have my own independance in a rented house, i want to still be in my relationship with shaun, i want to be financially stable.. i wouldn't mind if it was a struggle, i wouldn't mind if that sweet shop wasn't mine and i was on the till, i wouldn't mind if my car wasn't my beautiful black mini, i wouldn't mind if the transplant recovery wasn't an easy one and i had to fight and fight and fight. 
i would because i have realised, looking at this new prospective and giving myself permission to view a future and not just the dreamworld one i usually gave. an honest hope, an honest want. 
i realised, i want this future more than ever. i'm not so "if it happens, it happens" about it all anymore. 
i am fully aware that i'm in no position to control what does happen but i just for the first time ever looking at this whole thing in a very real place. 

i've been more than capable of coming home at the beginning of the week and i agreed to stay no less than another two weeks. i'm shovelling well over 3100 calories a day into this bag of bones body of mine to boost that result on the scales up by 9-10kg. i'm pushing myself on the bike and doing fitness sessions with mucularskeletal physios to boost posture, muscles and strenth by doing stretches, yoga, pillates and breathing exercises and i'm winning the battle with my niv (non invasive ventilator) every night and believe me i hate the damn thing but i'm doing it because i need that future! i really like the sound of it so much that i'm trying and trying and more motivated than i ever have been to work for it. i just hope the odds are in my favour. 

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