Showing posts with label Weekly Update. Show all posts
Showing posts with label Weekly Update. Show all posts

Week #25 - My Airvo 2!

It makes me feel so ick that I missed last week's Sunday post, not that it matters to anyone else but I've not missed one this year so I was sad to break my record haha. But last week I wasn't feeling too happy but I didn't feel like talking about it and I didn't want to lie by pretending I was fine either. It's not like me to feel like that but it's probably just me feeling weird after being in hospital for so long! In there I get stuck in my little bubble where all I really focus on is hospital life so any 'scary' thoughts gets pushed to the back of my mind until that bubble pops and I'm free and I panic haha. More on that later but first - my home Optiflow!

home optiflow, my airvo 2, fisher and paykel, home airvo, cystic fibrosis home oxygen
home optiflow, my airvo 2, fisher and paykel, home airvo, cystic fibrosis home oxygen

This is the machine I use when I'm in hospital and am needing a higher dose of oxygen than usual. At home on my regular oxygen concentrator I'd be using 2L or 3L which is barely anything, then increasing that to about 4L for physio and exercise. However when I'd get these bad chest infections and would be struggling to breathe I'd need a much higher dose. Anything above 4L on the regular concentrator is uncomfortable to wear as the higher the dose the colder it gets - so as you can imagine cold air whooshing up your nose isn't very pleasant! What's great about the Optiflow is it's humidified because of the water that you can see in the pic, making the air warm so it's so much more comfortable to wear and it also doesn't dry out my lungs as much as the cold air does. It also delivers the oxygen at a faster flow, again making life a lot more comfortable. All in all, it's a brilliant piece of kit!

I've mentioned it before on my blog and twitter etc, which was seen by the lovely people who make the Optiflow and they got in touch to ask if I'd like to try a machine at home. Obviously I said yes so they came all the way to the hospital to go through it all with my physios and I took it home with me after my last admission. Without it I'd have definitely have had to have spent another week or so in hospital! My lungs aren't really comfortable on 2L or 3L of oxygen anymore, I'm needing at least 4L at rest but now this is making life so much easier. I can increase the oxygen on the machine for exercise and physio and because it's more comfortable I've found it's making those a lot more effective aka it's easier to shift the rubbish off my lungs which is brilliant. I just love it and I'm so grateful to Fisher and Paykel for the opportunity to use it at home - you could say it's the best 'blogger freebie' I ever got ;-)

I guess the only downsides are it's not the most subtle thing to wear, as you can see (especially compared to the ) so contour and blush is a bit of a waste of time ;-) Also, sadly for me Freddydog doesn't like it at all!! When I'm wearing it he won't come near me, won't look at me - basically he avoids me as much as possible </3 It's only been a couple of weeks so I just need to give him time haha. I'm on it most of the time at home but not always so just have to make the most of Freddy cuddles (and a full face of make up haha) when I'm on my normal cannulas.

Before I go I'll quickly explain what was making me sad and worried, it was about my antibodies. When I first got assessed for transplant I had 0% which is perfect, it's exactly what you want. However now it's gone up to 9%, probably due to the infections I've had recently. They said which to put in basic terms means if there were 100 lungs that matched me 9 of them would be no good. This doesn't sound like much to worry about but there's not 100 lungs, there are barely any so any little thing that makes it harder to match me is a huge blow. I know it could always be worse but it's still sucky news that really worried and upset me. I'm less panicky about it now though, there's not much I can do about it other than stay as well as I can (which is what I'm doing anyway!)

Well I'm sorry for this monster ramble! I'm sure it's probably not interesting to anyone who doesn't need oxygen but I wanted to do a post on the Optiflow because I'm just so happy and grateful to have it! Hope you've had a fab week!

Week #23

Heyyyy! How are you? Well I'm still in hospital BUT off ivs and if all goes well I may be home on Tuesday. I won't get mega excited about it because I did when we tried this the other week and totally jinxed myself because I got ill again so I'm still bloody here! So just goooo with the floooow, lalala.

My gallery wall in my hospital room, artwork by my cousin Zac, age 5 <3 

So what can I tell you? I did get out last Monday and had a marvellous time at my aunts even though that day I got a mystery sickness bug so didn't quite get to eat all the BBQ but it still was a fab day. How typical that I'd get ill that day, none of the docs or cf team could explain it so I'm putting it down to CF tryna ruin my day - but it did not! 

Yesterday was so good, I got to escape for the day so Baby Florrie took me out for lunch haha. She's just so cute and funny, I'm so lucky to be auntie to the best bubba ever (not biased at all...) Then we went home for a bit to see Freddydog, I've not been home for nearly 7 weeks so it was a bit weird. Got me all excited for when I'm back properly though, eeeeep cannot wait! 

Before I go, as is tradition in these weekly updates, I shall tell you my embarrassing moment of the week. You know the Chihuaua filter on snapchat? I was on that singing the theme tune to Beverly Hills Chihuaua to send to my mum (long story, don't ask) but didn't realise someone had come in the room til I'd finished :'((((  They couldn't even see a chihuahua on my screen so it had absolutely no context to it for them and I kind of chucked my phone in my suitcase in a panic but because snapchat replays the things you record it just went on and on for which felt like an eternity :( Why am I such a loser? 

Anyway I hope you're well and that at least someone is still reading my blog lololol. Fingers crossed I'll be blogging outfit posts and that again soon! 

Week #22

Hey! How are you? So I'm still in but I got to see my Freddydog twice this week so that was good. Made him wear a daisy chain crown, don't think he was too impressed though.

Not much has gone on, the plan is to finish ivs this Thursday and if I'm ok over the weekend I can go home. Last time I only managed 24 hours off ivs so I'm really hoping I'll be ok this time because I miss home so much and I'm starting to feel so trapped in the hospital haha! But luckily I can go out for the day tomorrow to my aunts house, I'm so excited because other than going to the park behind the hospital I haven't left this place for six weeks. She's having a BBQ and I can't wait to stuff ma face like Henry VIII and spend time with my family.

Before I go something kinda cool happened - the NHS Organ Donation Facebook page shared a little thing about me and it's gotten 2.9k shares so far! How great is that that people are raising awareness of organ donation and cystic fibrosis? Very grateful to them! I'm glad I shared it too because despite being so open about CF on here I don't think I'm that honest in real life. I mean I tell people I have it but I kind of downplay it because I don't want to look like I'm putting a downer on my life or being attention seeking haha. But it got shared by a lot of ex colleagues and school mates and I think it gave them more of an understanding. It also showed me that people don't think I'm attention seeking or whatever but are actually really kind and want to help. I do think there are far more nice people in the world than mean ones. Anyway this is the post if you wanna see it

Hope you're well! What are your plans for the weekend? 

Week #21

Hallo! How are ya? This week has been a mix of highs, lows and a bit of weirdness also. And cake too of course.

Things were going good in the week, I was no longer a germ so people didn't have to mask up when they came into my room and my infection markers were all coming down nicely. On Friday they stopped the ivs and the plan was to see how I was off them before they sent me home. 

So Friday was an excellent day, first of all I did a bit of filming in the morning - get me haha! The physio wanted a video of me doing my breathing exercises that I do everyday to clear the rubbish off my lungs to teach the other physios how to do it 'cos apparently I'm the best in the business lololol. How is that for a talent? It's nice to know I'm good at something I guess. But I thought it'd just be a physio with a little camera but no, it was a man with a proper Nikon thing and tripods and microphones and I was just like oh gawd because I didn't have any make up on and my eyebrows ain't been done for over 8(!) weeks and they just kept saying how crisp and sharp the film was :( So I'm looking grim, coughing up on camera and because part of my physio is blowing my nose to clear all the airways they got a nice close up of that too. It was weeeeird and I'm absolutely dreading watching it back. But it's all for a good purpose, I'd do anything for my physios because they do everything for me - they're amazing! 

Then in the afternoon it was really exciting because a lovely lady from the optiflow company came to give me a machine of my own to trial at home! The optiflow is a machine that delivers oxygen but at a higher flow rate and is humidified so it's warmer (normal oxygen is cold air going up your nose which isn't always pleasant.) The hope is that if I get this at home I'll be able to do physio more effectively and just be a lot more comfortable in general. It may also mean I spend less time in hospital as its one of the main reasons I'm here so much, which would be amazing because this year I've spent more time here than at home. I'm so lucky and grateful for the chance to try it out! 

So Friday was going really well and the plan was home on Tuesday but yesterday things went a bit pear shaped. I got a temp and my heart rate was very high then my bloods came back with high infection markers so I'm back on IVs and probably won't be going home next week now. To say I'm gutted is an understatement, in 8 weeks I've only had four days at home so I'm very homesick. When the doctor told me I was fine because my cousins were here so we were just joking and stuff but when my parents came I did that thing where you're upset and take it out on them, TO MY SHAME. I was so ridiculous, I snapped at them and shut myself in the bathroom crying for like 20 mins with no oxygen - smart move -_- Then I came out and was like 'I'm sorrrrry, I just want to go to bed and watch Shakespeare!' :') Seriously, what the hell? I was already having a mini pity party that day anyway because I was missing out on my best friend's birthday thing last night so I just got pushed over the edge haha! So today I've woken up looking ugly af from crying which has made my lungs achy too, I'm such a n00b. But it's out my system and I'm fine with it now. 

Well I've definitely rambled enough today so I shall leave it there! Hope you've had a good week! 

Week #20

Hey! How are you? So I was doing quite well this week but then I got ill again, they think it was the flu - so now everyone has to wear masks when they come in my room because I'm just one big GERM.

Before I got the lurgy I did get to go out for a walk (or a wheel if you will in my chair) and get that all important cherry blossom pic for Instagram ;) but other than that I have been on lockdown in my room. But despite the fluey setback this week has been successful as only two embarrassing incidents happened to me so that's good! (If you're interested the first was getting caught with the worst hair ever by a very handsome junior doctor and also effing up my fake tan so bad my nurse was going to call the doctor because he thought I had a rash.)

Before I go I should mention that this week has been CF Week. Had I been at home I would have done a whole week of CF posts but no, CF actually ended up putting a stop to that. Sums up CF rather well really, it's always being a pain in the ass! It's not the inspirational thing to say, I know people like those with illnesses/disabilities to be all 'It doesn't stop me!' But the truth is it does at times. It's a horrible thing! This year I have spent more time in hospital than at home, constantly attached to a machine or two. Like as I type I'm on my overnight feed machine which is attached to my feeding tube in my stomach, I have my nebuliser on breathing in meds, an iv drip going into my veins and of course my optiflow machine on my face delivering oxygen so I can breathe. It's fine and ok, just have to get on with things and you get used to it. Doesn't mean it doesn't suck though, it's definitely not how I wish my life was. Like so many others with CF, I just wish for a 'Life Unlimited' where CF doesn't hold us back in anyway - to be able to do something as basic as breathe without having to think about it! 

Sorry about that ramble, am drugged up to the eyeballs right now haha! I hope you don't think I'm being woe is me or anything, it's not so much about me but more people I know with CF going through really hard times right now and it's just upsetting to see others go though it. If you are lucky enough to fill up your lungs with air with ease please don't ever take it for granted! 

Week #19

Hey! How are you? Well I'm still in, have had a mini set back because I've got bad hay fever which has made my sats drop really low again so I'm a bit annoyed. I've really been struggling to breathe but yesterday was the absolute best because I got to see my Freddy for a few hours! 

There's a little park behind the hospital so I met him there, for once he actually acknowledged me (usually he's too interested in the park to care haha!) The best bit was he found another Bichon to play with, she was only 9 months old but she's so much bigger than him. He's a bit of a grump sometimes with younger dogs but he loved her so I'm trying to convince my family he'd like a sister ;) 

So even though there's been a few annoying things healthwise, yesterday was the best! I feel so embarrassed that I was so miserable in last week's post, like that same day on Sunday all my family came to visit and it was really lovely. It's so shameful of me to complain when there are people here with no visitors or anything, so I'm really sorry for being a moo - next time I am tell me off!! 

Anyway I hope you've had lovely weeks and are enjoying the sunshine if you can! 

Week #18

Hello! How are ya? I got out of the high dependency unit yesterday and am back on my usual ward which I'm very pleased about!

 Firstly because it means I'm getting better and secondly I have a window - a week in a windowless room was a bit boring haha and it's not good for your mood to not have natural daylight. It also means I get to see the little ones in my family again (kids aren't allowed to visit on HDU) and also I can go to the cafe again - as you can see I made up for lost time ;)

I haven't much to tell you to be honest, these weekly updates must be so bloody boring for you to read these days as all they do is revolve around hospital life. I know life could be so much worse but I'm really homesick today! I'm so lucky I get so many visitors but I just want my own bed and all my things and to see Freddydog, not seeing him for weeks at a time always makes me really upset. At least I know he's it that fussed that I'm gone haha I'm not even just saying it but he's not the most loyal dog - he loves whoever feeds him :') 

Enough of my mini pity party haha I'll be feeling ok tomorrow - we all have down days don't we? I think my stint in HDU left me feeling a bit funny too, it's not the nicest environment down there (although the staff are super lovely!) I hope you're good and having a fab weekend! 

Week #17

Hey! So you may have seen I'm back in the hospital, I just can't stay away from this place - must be the delicious food ;) At least being lazy paid off for me because I hadn't even unpacked from last time!

Hospital treat 

After four days at home I was admitted again on Tuesday because I was struggling to breathe and my lungs were full of rubbish. But in the couple of days of freedom I did have I had a night in and a takeaway with my friend and also a little trip to Primark and Boots so that was good! 

Right now I'm in the High Dependency Unit because I'm on three IV antibiotics three times a day and also a nebulised one twice a day which have sent me a bit Loopy-Loo! The side effects include sickness and dizziness so I'm just needing that bit more help to do my physio and other normal meds and treatment - so I'm getting the VIP treatment on HDU! Got transferred in the middle of the night Friday which wasn't ideal but feel so rough I needed to be moved. But being very well looked after and getting lots of rest so all is good.

I hope you're well! I've just realised I was on HDU this time last year too, let's hope this isn't a new annual tradition ;)

Week #16

Hallo! How are you? I got home from hospital on Thursday so I'm happpppy. Completely knackered though, I always forget how tiring it is after a stay in there. I spend most of the time stuck in one room for three weeks and then at home it's like 'Wooooah, all this space! And I have to use stairs!' haha! It's so good to be reunited with Freddydog, my bath and my bed though.

Last night was so good, I had my first Chinese takeaway in over a month and it was like heaven! My best friend came over and we definitely ordered too much food for two people but no regrets at all. We were supposed to plan the drinks menu for next weekend because I'm having like a little cocktail night indoors with family and friends as like a belated birthday thing but we ate too much and our food comas were so bad we couldn't even face thinking about drinking haha! I don't even drink now anyway, I had half a glass of Prosecco on my birthday and I was nearly drunk, the shame. It was watered down with lemonade as well!! My uni self would be very disappointed in me.

Anyway, today I plan to sort out my room and unpack my hospital suitcase but we all know I'm just gonna eat leftover Chinese food and watch Netflix. What are your plans for today? I'd also love some cocktail/mocktail recommendations please!

Week #15 (Birthday Edition!)

*SUPER LONG POST WARNING* Hello! So I'm still in hospital, it's just been same old, same old really. The breakfast lady is still calling me Joseph (it's been a year now, it's too late to correct her), I've met three medical students who don't seem to understand how my twin can be a boy and I've been told I'm getting chubby by four different people. On the plus side I've only been caught taking a selfie twice, when last admission people walked in on me four times.

A cute present from my cousins

BUT in more exciting news it was my birthday on Friday (as well as my twin's, happy bday Tommy!) I am now 23. I feel like 23 is a nothing age in a way. 18 was like woo clubs and alco-ma-hol, 19 was last of the teens, 20 was 'adulthood', 21 was special even though I'm never sure why and 22 was the one time you can sing 'I'm feeling 22!' It was still such a fun birthday, I thought it'd be sucky being in hospital but it was almost better because as well as family and friends spoiling me too much the lovely staff here treated me like a birthday princess too haha! My CF team got me cards and a balloon and a voucher and chocolates and I got all teary because everyone was so lovely so I felt very lucky and loved. Sorry if that sounds a bit like a #humblebrag but I wanted to point out how lovely the people in hospital are since the papers try and make out they're all just in it for the money when actually they're all superheroes. #SaveOurNHS!! But anyway, here's my room all birthday-fied: 

Freddy made this himself ;-)

It was exciting because in the evening my mum had booked a surprise, the doctors and physios were umming and ahhing about it for a bit because I'm still on Mr Optiflow (which isn't portable!) But luckily my lungs could just about manage on 6L of oxygen, which is a lot considering I'm usually on 2 or 3L when I'm 'well' but for a few hours it was ok. So I was given the go ahead on the condition that I did no walking at all and used my wheelchair. This was ok with me, but looking back I should have demanded a more outrageous form of transport seeing as it was my birthday. Like in a litter like Cersei when she was Queen Bee. Or a giant egg like Lady Gaga at the Grammy's. I'll bear those in mind next year! 

So I went out in my wheelchair which was much more modest but no less fabulous because I went to see Wicked with my family! We had such a good time and the staff were really great, they sorted out an extension lead for my portable oxygen to be plugged in and made sure everything was wheelchair friendly. It was funny because me and my chair had to go in a stairlift thing, going up was fine because I felt like in the end of Grease when they fly into the sky so I was a loser and waved to everyone haha. Going down was a different matter however because it was a bit of a drop and I got scared! No surprise there though because I'm a massive wimp. 

Then yesterday I got to go home for a few hours, my family all came round and also my two best friends which was a big surprise because one lives far away and I didn't know she was coming! It was good to see Freddydog too, especially since today it's been 10 years since we got him <3 

Sorry if this post looks a bit like #blessed haha but I've really had one of the best birthdays ever thanks to everyone being so nice and I'm really grateful! Thank you for the birthday wishes too! 

Week #14

Hello! How are you? I'm still in hospital but doing ok so it's alllllll good. I'm able to leave my room now so my mama wheeled me down to the cafe for important supplies: 

This week has gone pretty fast actually, even though I'm stuck in hospital I've actually been kind of busy and I'm so knackered now, this is my routine:

5am: Do a nebuliser and some chest physio (these are breathing exercises called autogenic drainage that help me cough up the nastiness in my lungs) 

5:30am: Back to sleep

6am: Nurse comes and does first two ivs, so now I'll be on a drip until about 9am

8:30am: Do 3x nebulisers (nebs), tablets and more physio 

9:30am: Get dressed and ready, then squeeze in an episode of House Of Cards!

11:30am: Physio comes and we do percussion, which is basically her hitting me over my chest and back to literally  beat the stuff off my lungs! Not the most comfortable thing but it doesn't hurt. While she's doing this I'll do deep breathing or use a machine called the bird. It forces air down my lungs to help expand them so I can take a deeper breath in and do physio more effectively, it's great at shifting the really sticky stuff at the bottom of my lungs. So I take a deep breath in and a big blow out which is tough because as I blow out it's still trying to force air in, I guess it's a bit like when you're trying to walk against the wind!

      The Bird! 

12pm: IVs time so back on the drip!

12:30pm: Lunch time, then I have a nap.

1:45pm: 2 more nebs 

2pm: Another IV drip 

2:30pm: The physio comes back and we basically repeat what we did earlier. 

4pm: Mama is here! And other people come to visit too in the evenings. 

5pm: Dinner time

6pm: IV time

7pm: 3x Nebs and tablets 

8pm: The on call physio arrives and we repeat what we did earlier, she's here until about 9pm.

9pm: Start overnight feed, this finishes about 10am the next day. 

10pm: Mama goes home and I'm back on an IV drip

11pm: I do some physio and go to sleep, IVs finishes about half past midnight so finally the light can go off! 

 And in between all that I've seen various doctors, my CF team and healthcare assistants come in to check my blood pressure etc. And I'm on my Optiflow the whole time (humidified oxygen that is also delivered at a higher flow, basically gives me a bit more oomph compared to my usual stuff!)  

My physio said the physio I do with the bird and everything is the equivalent of someone running a 10k, I'm not sure how accurate that is but I do know it's tiring! But I'm lucky to have such a good team of medical staff and also family and friends all helping me get better so I can go out on my birthday (which is this Friday, eep!) 

Sorry if this was a rambly, boring post - just thought I'd tell you what a hospital stay is like for me! The treatment regime is pretty much what I've been doing every day at home for the past year and a bit except without the bird and I'm not always on IVs. A lot of people ask me what I do all day and this takes up a huge amount of time! I'm not quite the lady of leisure people assume I am ;)

Week #12

Hallo! How are you? I was like 'Woo, gonna try daily blogging again' but that didn't happen because CF was just like 'LOL, no.' But if I aim for 3 or 4 times a week that'd be great. This week I've been feeling so breathless so when me and my mum went round the shops she needed to push me in my chair the whole time which I haven't had to do while shopping before. My poor mum, it's extra work for her! So my lungs have been eejits but then so have I because I had to finish my IVs a day early due to my clumsiness. I dropped my IV thing and dislodged the needle which was OUCHY so had to just take it out. But other than that mishap this week has been wonderful.

From lunch with Florrie

On Tuesday me and my aunt went to see How To Be Single which I actually really loved, was way funnier than I expected! Yes it was a bit clichéd at times but it had Leslie Mann in it who I think just rocks and Rebel Wilson. She's not to everyone's taste but I have a stupid sense of humour so love her!

Then on Wednesday I saw Baby Florrie! She was 1 in December and is getting so big, we went for lunch and she was just pulling all these funny faces and We were being wheeled along side by side and she kept looking me up and down as if to say 'What you doing in a pram? I fancy a go in that one!' She is the loveliest of bubs.

And thennnnn last night was most exciting of all, my stepdad organised like a do to raise money for the CF Trust! It was such a fun night, I'm not sure how much exactly we raised yet but I'll tell you all about the party tomorrow (there's stuff on snapchat now though, follow me at sickchickchic *hinthint* haha!) It was so, so good!

Oh before I go can someone tell me what this means - I had a dream on Friday where was playing, then on Saturday morning it was on the radio then on Saturday night it was played also. Things come in threes and I feel it's a sign of something, but of what? And is it to do with the song or Bryan Adams or Sporty Spice? Will it bring me luck or misfortune? Or am I reading too much into this? I just don't know.

Well I hope you've had a great week! I'd love to know something fun that you did!

Week #11

Hey! How are you? This week has been a bit of a mixed bag but nothing a bit of shopping can't fix ;-) I don't usually buy loads of things at once but I have done and now I most definitely need to slow down haha!

whistles pineapple necklace
A couple of new buys - a and (obsessed with this shade of pink!)

I'd spent a few weeks feeling crappy and having bad sinus headaches every day but luckily they seemed to have cleared up now and I'm feeling a bit more human so I managed to go walk round Bluewater for a couple of hours which was great! I brought the wheelchair but only needed it to carry the oxygen in and of course the shopping ;-)

cystic fibrosis wheelchair

OK, well maybe I should have sat in it after a couple of hours but I was being stubborn because I want to keep my strength up as it's important for recovery after transplant that I keep as active as I can. Paid for it yesterday I tell thee! But even though my muscles and lungs weren't happy yesterday was a really good day because I went for a meal with my friend and then in the evening spent a good hour face swapping on snapchat with my mum and her friends. Why would I miss being able to go out on a Saturday night when I can do that instead? Seriously though it was too funny and my stomach still hurts now from laughing. Freddydog wouldn't join in so I did a photo of a photo instead:

On that weird note I shall love you and leave you. Ooh but before I go I just wanted to say a big thank you for the lovely comments on - afterwards I was worried that I was looking a bit 'woe is me!' The situation does suck but I'm very, very lucky to have the best family and friends around me so already I know I'm in a better position than a lot of people, ill or not. In fact I'd say I'm being almost too well looked after, I think I'm turning into a bit of a spoilt princess haha!

I hope you've had a lovely week! I'd love to know what's been your highlight?

Week #10

Hey! How are you? I is sick, ughhhh. Not even like a little bit, this week has been full on icky-ness so on Thursday I started IVs. But without wanting to sound like too much of a junkie it's my favourite combo (Tobi and Mero if you were wondering) as they're the ones with the least side effects for me, Mero is three times a day but Tobi is just once and they all come ready made so no need to faff around mixing up meds. So I can't complain! Also on Thursday I got confirmation that I am now officially on the list for new lungs - eek!

Made myself a sofa bed and he stole it -_-

I'm planning on posting a more in depth thing on being listed since something so huge deserves a post of it's own,  but I will say for now that it's just very surreal. If you had told me this time last year that I'd be in this situation I'd have laughed in your face - I mean my health wasn't great but I wasn't on full time oxygen and I had so much more independence. Madness how quickly life changes!

Like I said, I'll go into it more another time but one thing everyone has been asking me is 'So when you having that done then?' It's a bit crazy to me how little people know about transplants! Unfortunately organs aren't something that you can just order on Amazon Prime, you have to wait for a pair to become available that are an exact match to you. And when I say available, I mean when someone passes away who is registered on the organ donor register and/or their families have given consent for their organs to be donated. Obviously there is no predicting when this happens and if it does there's a very short space of time to get the organs to the recipient so if there are potential lungs for me I have to be ready to get to the hospital at any time from the moment I've been listed. I could get a call tonight, tomorrow, weeks, months, years - there's just absolutely no way of telling.

But anyway I'll go into it more in another post, it's an important thing and I want to make sure I can explain it properly - right now I can't really think straight as I have this horrid sickness bug and have spent the last two days with my head in a bucket lololol.

I hope your week has been less emosh and sicky haha! If you have any questions about organ donation/being on the list do ask and I'll cover it in my post :) And also just a quick Happy Mother's Day to my mama - this is all just as hard, if not more so, on her but she is with me every step <3

Week #9

Hello! How are you? So I didn't blog at all this week again because I'm still not really feeling like doing anything blog related for some reason, I don't even really feel like reading them lately either. I think it's probably because I'm ill right now, I've caught something buggy so all I do in between treatments and medicines is watch Netflix and sleep so I think it's IVs next week for me! Knew I jinxed myself


Oh one thing I did do this week was go to the dentist, it's the last thing I needed doing before they can list me for lung transplant as if you have gum disease there's evidence that shows the bacteria can infect your lungs too so obviously they wanted to make sure I had the all clear before listing me. So I was brushing my teeth that morning and there was blood and all I had was images of that woman in the advert with the missing tooth so I was like 'Oh no that's it I have gum disease I won't get listed wahahdfhsafgsdfs!!!' Such an idiot, it was only because I had a new toothbrush and you know when they're evil because they're too hard? And I was just brushing my teeth in that aggressive way that you do right before a dentist appointment (do you do that too?) and I hurted myself, so dumb haha.

Anyway what I'm trying to tell you is I got the all clear from the dentist so next week I'll be getting that call from Harefield and will be hopefully put on the list. All feeling very real now!!

I've not been up to much else, 1/3 of came round last night though for a takeaway and it was lovely to catch up with her. I forgot to mention last week but they said to say a MASSIVE thank you, they are over the moon. Thank you again from me!

Well I hope you've had a good week and haven't caught this lurgy that me and everyone else seems to have caught!

Week #8

Well hi! Didn't post most of this week because I've not spent much time online really, I've mainly been watching films and reading and also I've even managed to get oot and aboot!

And also been living in these cute H&M jimjams

I've been a real lady of leisure this week - bar a quick trip to the CF clinic on Tuesday there's been cute lunch dates, shopping trips and I forgot to mention that last week I even managed a night out in a pub for the first time since last summer!! (if you're interested!) So basically I've been buzzing lately. 

I had to go to the CF clinic to get some bloods done that Harefield forgot to do (it was a HIV test if you wanna know, just a standard thing they do at every transplant assessment) and also I have a bit of a sinus infection so got some tablets for that - fingers crossed they do the trick and stop it getting to my lungs! But without wanting to jinx myself my lungs are pretty ok at the moment, my lung function was 25% at clinic which is good (well good in their current state, obviously that's still crappy haha!) I've been walking around the shops twice this week which is knackering but I didn't have to get in the wheelchair at all, I just used it to carry my oxygen and shopping bags in which I was over the moon about. I do wonder if people thought it was a little odd that I was pushing the wheelchair instead of being in it though haha.

So after such a good couple of weeks healthwise and getting on with nice, normal things it definitely threw me a bit when Harefield phoned me on Thursday, even though I was expecting their call. It was the transplant coordinator to say that they're happy to accept me onto the list for new lungs as soon as they get results back from a couple more minor tests that need doing. It's just insane to me that in a couple of weeks I'll be on that list waiting and hoping for that life saving op. It feels strange writing that I need something 'life saving.'

But more on that when I know more! Have you had a good week? What have you been up to?

Week #7

Happy Valentine's Day to you! I'm spending the day spooning...a big tub of ice cream. Not in a feeling sorry for myself way though, it's a pretty ideal way to spend a Sunday, no?  Hope you're feeling the love, whether you're spending the day with your special someone, your best mates, your family or on your own having a Netflix marathon. Today I'm going to be very cheeky and ask you to share the love...

See what's happening is my lovely cousins and another lovely lady (who I've only ever met briefly, once) are walking the London 2 Brighton Challenge in May for the Cystic Fibrosis Trust - that's 100km or about 62 miles. I know, isn't that insane? I'm so touched that they're doing this, it's the sweetest thing ever even though I think they're crazy. My cousins did a walk for CF before that was I think 26 miles but they got lost so ended up doing 32 miles haha (just don't tell them I told you!) and that was hard enough so it's so amazing that they're pushing themselves even more to help raise vital funds for the charity that helps so many people with CF and their families - from helping a newly diagnosed baby and their family to funding research towards that all important cure, the CF Trust is just incredible and I'd be lost without them.

And this is an exciting time for CF - there are better treatments being found meaning that people can experience a better and longer quality of life, but still on average two young lives are lost each week due to the illness. It feels like every week I'm hearing about someone else passing away and it's just soul destroying seeing the effects of this evil illness. I hope at least there will be something one day that makes a person with CF's quality and length of life the same as the average persons. Not the life of hours of nebulisers and physio and countless pills and iv antibiotics, not the constant worry that every time you get a chest infection you're losing more precious lung function permanently or the uncertainty of the next day, never mind the future. Not having to go through scary things like lung transplants, which is a wonderful thing but not the straightforward cure people think it is. Basically, it'd obviously be much better if our health didn't reach that point where our lungs are failing us!

"Not being able to breathe takes the wind out of your sails and robs you of the simplest things. It's not easy when your lungs have one purpose and they fail at doing that." (picture and quote via Facebook, not sure of original source!)

I don't really talk about it that much as it's not something I like to dwell on but living with CF can be bloody terrifying, not only for me but for my family and friends too. It's just insidious the way it seems to have slowly chipped away at my health throughout the years and has now progressed over the past year to the point where if I don't get a lung transplant I will die. I don't even know if I'm able to go on the list yet and waiting to find out is just so stressful and horrible. I hope more than anything that one day people won't have to go through the same which is why it's so important to raise the money towards finding a cure one day.

Annnnd this is where you come in! If it's at all possible it would mean the absolute world if you could sponsor 'The Blister Sisters' (named after the damage done to their poor feet the last time haha!) for the walk they're doing - even £1 would be incredible! I know it's a bit cheeky to ask but as I'm sure you'll agree it's going to a fabulous charity and it's all for an excellent cause. If you're feeling charitable - thank you so much!!

Week #6

Hey! How are you doing? Sorry most of my posts have just been these weekly update type things lately, it's just obviously I couldn't blog properly in hospital and when I got home I decided to do a major clearout of my room. I pulled everything out to chuck or charity shop and ended up getting everything in a bigger mess than it was before so I was just sat in the middle of it all like 'Muuuuuum!' She of course knew what to and now my room is looking bee-yoo-tee-ful and ready to take blog pics in again.

next dog cushion
Neat and cosy bed!

She came to rescue again last Sunday. I saw The Revenant - SO GOOD. It was so beautifully shot and gave me all the feels. It made me scared, sad, happy and grossed out all at once and Leonardo needs to win that Oscar! You know I went because I was like oh hai Leo and Tom Hardy (who you definitely won't fancy in this film) but left with a little crush on Domhnall Gleeson - whodda thunk it? Only in this film though because his hair and jacket makes him look like he could join The Libertines (not sure what that says about my taste in men.)

Anyway it was funny because my portable oxygen concentrator ran out of battery during the film and I was going to have a strop about how it was unfair because this was my first trip out this year that wasn't going to a hospital blahblahblah. But then I realised I was watching a film based on the true life tale of a man who basically crawls across a brutal terrain full of all sorts of dangers after being left seriously injured from a bear attack and it did put things into perspective for me. He didn't have mummy come to the rescue with a spare canister and a wheelchair and a car to get home safely. But because of that my mum got to see the end of the film, she was like 'Who's the baddie? Who's the goody? Is that Tom Hardy? I'd never have known. This is gory you girls shouldn't be watching this' hahaha.

But yes, it was very good and I recommend it if you don't mind a bit of gore!

Oh and the obvious thing that happened this week was that I had my lung transplant assessment at Harefield Hospital. I had lots of tests such as scans and bloods to check out how bad my lungs are and if my other organs are well enough to go through the transplant should I receive one. There was lots of information to take in and right now it's all a bit overwhelming - I'll know in two weeks time what the outcome of this assessment is. Sorry for not going into too much detail, to be honest it's quite draining to talk about and after telling all my family and friends I'm not really in the mood to talk about it any more! For now I'd rather just ramble about randomness, I hope you don't mind - I promise to update you properly when my brain has calmed down a bit!

I hope you've had a good week! Have you seen The Revenant? If you have let's do a snog, marry or kill of  the characters of Tom, and Domhnall!

Week #5

Hey! How are you? I'm very happy because I'm back home after three weeks in hospital - it's good to  be back in my own bed and for once Freddydog isn't sulking with me for leaving him!

The cutest socks!

I think he will be next week though, I'm going to Harefield Hospital on Wednesday for three days for a lung transplant assessment. I'm not exactly sure what will happen, I just know it's a lot of tests to see if I'm a suitable candidate to be put on the list for new lungs. It'll be good to meet everyone there and get some of my questions answered, I'm sure I'll be posting all about it!

In the meantime I got told to relax and take it easy before then because those days are going to be pretty full on! I tried, I really tried but it just didn't happen. Yesterday I got into that much longed for post-IVs bath and was feeling all Zen and that until I saw a dead spider bobbing along with all it's dismembered legs floating around it - so grim. So that bath was over quite sharpish and then I looked on snapchat and saw that was having a big wardrobe clearout so felt all inspired to do my own! I basically got rid of all the colourful things and it's looking like my dream closet, next I have shoes to do but you know I'm a shoe person so it'll be a painful process...then I can eBay or donate stuff and finally have a bit more storage space. So it was all very good that I did that except now my bed is covered in clothes so I had to sleep in this tiny space because I was too tired to tidy!

Tonight I'm going to the cinema to see The Revenant with a group of family and friends which I can't wait for because so far this year I've been stuck at home ill or stuck in hospital so it'd be good to actually get out haha! Have you seen it? Is it as good as it looks?

Well that's my news, sorry there's nothing exciting to tell you haha. But I'm hoping to get back to blogging outfits and stuff again now. What have you been up to this weekend? 

Week #4

Hello! Well, I'm still in hospital - knew it was wishful thinking that I'd be out Friday but I guess one must always have hope haha. But they said probably Tuesday so not long to go til I'm back in my own bed!

And back with Freddydog! Today's actually his birthday, he's the big 1-0. I feel sad because I missed his last birthday too as I was in hospital but then I know that's stupid because he doesn't realise and for him every day is basically his birthday because he's so spoilt haha. 

Not much has been happening, just slowly being weaned down on my oxygen requirements but they finally let me go on a little walk instead of keeping me cooped up in one room. You do feel like you're going a bit mad stuck in the same room attached to all these tubes and wires for weeks on end but luckily I get loads of visitors so it's not so bad. My friend came and she brought me this jelly bean game where you basically spin the wheel and have to eat whatever bean it lands on. But you don't know whether it'll be nice or disgusting, I got dog food flavour and I nearly cried it was so gross!! My brother once asked me would I eat dog food for a million pounds and I was like well that's a lot of money and it can't be worse than what people eat on I'm A Celeb...but now I know I definitely would not. Probably shouldn't admit that I considered it though haha! Would you do it? But anyway it's a stupid and silly game but really funny, if you have a dumb sense of humour like me!!

Well I shall leave you to enjoy your Sunday without me rambling on about dog food and jelly beans! I hope you're good! 

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