Part 1

On November 14th 2014, i got admitted onto pearce ward that day. i was struggling a little at home but mainly felt tired and easily breathless .. well, more than what is now my usual.

Sue the physiotherapist consultant decided it would be best to put me straight onto the V60 non-invasive ventilator with 35% oxygen rather than my usual 28% oxygen.

the relief i felt going on it, made me worry. i realized how much i was struggling on oxygen now. i kept trying to tell myself that it was just because of a virus.. i must be growing a virus!

my oxygen levels were still my regular and heart rate was only slightly raised. i didn't feel any cold or flu type symptoms. 

That week i slept a lot, ate very little and slept some more. Due to not eating very much i started feeding none stop 24 hours a day. Blood test results came back and my iron was very low, albumin was very low but my infection levels weren't too high! Virology results came back not too long after and i was right, i was yet again suffering from rhinovirus! 

Never have i ever heard of someone getting rhinovirus as often as i have; it was literally every admission it would be a given that my virology results would come back positive for rhinovirus. 

Rhinovirus is a not so very posh name for the 'common cold' 

It's harmless to someone with an average or good immune system but for someone like me with Cystic Fibrosis is likes to cling to me for dear life and keep returning, it usually clogs my lungs up with a RIDICULOUS amount of sputum and that usually makes it very hard to breathe just at rest. 

However, like i said, i didn't have any cold like symptoms and my sputum load was no different to my usual. It was odd.

I didn't really care very much, i was just so very tired and weak. This we put down to my iron and albumin levels being so low.

Easily treated, lets whack some IV iron and Albumin up and i'll be fixed! 

WRONG.

Things seemed to go from bad to worse as i started swelling due to water retention so i was given IV furosemide, which is the IV equivalent to water tablets. 

Easily treated, lets whack that IV furosemide up and i'll be fixed!

WRONG.

The Furosemide worked.. too well, it dried me up. Both my bowels and sputum became very sluggish! infact, my sputum was like concrete and this brought upon some really horrendous times. 

I was started on some laxatives to prevent a bowel blockage, which was the last thing we needed at this point, but it was definitely on the cards with the way things were heading!

I was now moving no sputum at all and my blood gases and oxygen levels were not very good at all. 

It was now, early December. I was feeling no better and if i was being honest with myself, i was feeling a lot worse. 

They sent me for an x-ray and when i came back, i took myself to the bathroom, which is where things took a dreadful turn. I was in the bathroom and working so much harder on my breathing than usual and it scared me, i found myself gasping for breath taking the 3 steps back to my hospital bed when i suddenly just couldn't get the breath in any longer. 

I was coughing now but still not taking the breath in and the NIV felt like it was making matters worse because i was working against it trying to get back into a rhythm but coughing uncontrollably. My physio had heard me struggling and came running in, realizing i was needing more help, she buzzed for assistance and suddenly my room was full of different people. Nurses, doctors, pyhsio’s. 

I started feeling faint and dizzy now, still struggling for breath and coughing being blocked off by sputum that was too thick to move. It was suffocating. 

My sats had dipped to 52, heart rate was nearing 180 and they put 100% oxygen through my NIV. 

I was getting tired now but i could feel that the sputum was moving so slowly but i was nearly there with it. Just a few more coughs and i could get it up and out!!

Finally, i budged it and was relieved to feel the NIV fill my weary lungs with much needed oxygen. 

I was exhausted and scared. 

What had just happened? Was this going to happen again? 

I was told they call it 'plugging off'. It's exactly how i described and how it felt. A plug of sputum gets stuck in your main airways and prevents air to flow through either in or out. This stops the sputum from moving which in turn prevents you from getting oxygen in and essentially makes it bloody hard to breathe. Harder than i ever knew it could be. 

I was thankful i had the NIV on as that must have been forcing some air in somewhere. I know for certain that without that i wouldn't have been able to get the tiny breaths in by myself and that petrified me. 

I also came to learn that it was going to happen again and again, and again and again for the next two weeks i was caught completely off guard and would have these plugging off episodes with no warning or way to prevent or control them. 

All i could do was push the buzzer and get help and support. 

It was coming to the end of my 4th week, my albumin was low, i was eating nothing but a few nibbles a day, my feed was all the nutrition i was getting, i was sleeping most of the day and now these plugging off episodes were getting worse with each one that came next. I would black out a couple of times, the first time that happened i was lucky that i had someone with me that night. I had woke up in the middle of the night coughing and unable to stop for a breath, the nurses were in straight away to monitor my obs and support me and adjust my NIV settings accordingly. 

But my oxygen levels just went lower as they increased the oxygen they were giving me, i remember looking at my mum who was looking as panic stricken as i felt, i just couldn't breathe anymore and i felt weak and faint and then i don't remember until i came back around being cradled by a nurse called jean!

I had my mum or my dad stay over on alternate nights after that, i didn't want to be alone for very long, and I always wanted someone to be around. 

The episodes themselves were of course scary but that's not why i didn't want to be alone, i didn't want to waste time, i wanted to spend as much time with people as i could because of the way i felt.

I felt the worst i had ever felt and i knew this was not good. I kept thinking that i was dying, that what i was feeling was me dying and the more i kept thinking it and having all these other thoughts, i just had to know, i was driving myself crazy. 

I had so many questions i wanted to ask and wanted to know. 

I tried to tell the people closest to me how i was feeling but it was hard to tell them this, i wanted to protect them and i also didn't want to sound like i was giving up because i wasn't! 

This was why i wanted to tell them, because i wasn't giving up..  i wasn't ready yet so i needed people to know that this was how it was feeling so they could do something or at least tell me i was wrong. I was telling the wrong people though, my parents couldn't give me the answers as much as they would have done everything and anything to be able to. I kept being told to stay positive and not be negative by different people but it just made me more frustrated, i wasn't being negative i was being completely and utterly honest and genuine. 

I requested to speak to one of the doctors. I had to know, i was sick of second-guessing. 

So Proff Webb came to speak with me one lunchtime. 

I couldn't even get the words out of my mouth. 

"I guess, i wanted to ask if... i think i know what i feel but... i'm just wondering.."

i had been asking myself the question over and over for a week and a half now but couldn't get the words out now the time had come to get answers. 

why?

maybe part of me felt stupid for asking incase i was totally wrong but i think maybe i was scared incase i was right in what i was thinking. 

"are you trying to ask if you're dying?" Proff said.

"Yeah and i just want to know will next week be my last christmas without transplant?"

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it's friday

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. http://www.thelimolounge.net

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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