Showing posts with label CF. Show all posts
Showing posts with label CF. Show all posts

March Goals

February was busy, busy, busy! Not complaining one bit though because I've been enjoying it. Pre-transplant a question I used to get asked a lot was 'Don't you get bored?' And I always answered no because I really didn't. I would literally sit in one room for weeks at a time attached to all sorts of machines and while I felt frustrated I'd not really say I was bored. I used to think I was just maybe a boring person haha but I realise now I was just so ill I had no energy to feel like doing anything! Now I'm better I always have to be doing something, now I can't bingewatch shows on Netflix because after an episode or two I have to leave the house or I'll go stir crazy. It's so weird! But again, not complaining one bit. Anyway, as for my I was a bit hit and miss. I um, quit the gym and instead bought a cinema card haha but I exercise at home every day anyway so I've proved to myself I can motivate myself to do it without having to pay for the gym. I did not shop less but I do have a nice little haul to show you! And while I didn't buy many beauty products last month (I'm still doing the empties challenge) what I did get has been cruelty-free, so at least I've managed that goal! Here is what I want to achieve this month...

1. No new clothes/products.

Ok so I know I said this last month but this time I mean it because I really can't afford to buy any more and keep on going out so something's gotta give! But I'm really happy with everything I have at the moment so I'm sure I'll survive a month without new things...

2. Work on my Etsy.

I'm so close to getting it all set up so a big goal for the month is to relaunch it! I have no massive plans for it, it's just something I loved doing so it'd be nice to run it again. 

3. Drink more water. 

Keeping up with still I'd like to drink more water. It's the only thing I really drink unless I go out so I'd like to see if I can cut out everything else all together but we shall see! 

4. Keep saying 'Yes' to more things.

I used to be the worst for sticking firmly in my comfort zone but this year I've been agreeing to more things from meeting new people to trying new things and it's paid off because I'm having a lot of fun! It's difficult, especially if you're a bit introverted like me, but so worth the 'risk'. 

5. Read more.

Not just books, but blogs too. I've neglected both recently (probably because I've been out more!) but it's something that I really miss so I'd like to make more of an effort with both. 

Ok, so what are your plans for March? Anything exciting?

Wondering What To Do With Life

Jacket |
Dress | Topshop (via Depop, )
Boots | Topshop ()
Bag | Kate Spade

So I utilized this wall in my garden again and got caught by my neighbour. He'll be 100(!) this year, isn't that bloody amazing? He's great and has all these stories, he knows so much but he was left perplexed by what I was doing and I think he just thought I was a bit bizarre. 

I've had one of those stressy nights where I've been up all night wondering what to do with life - funfunfun. In lots of ways I feel like I'm a little bit behind other people my age because of the age I was when I started to get really ill and I've been doing that ridiculous thing of comparison which is just completely stupid because my situation is different to someone else's. Not wanting excuses or anything, but it's just proof how you shouldn't compare as we don't know what someone else's story might be. 

Yoko Ono said that 'Time is a concept humans created' and I find myself going back to that quote often. Life isn't a race and you have to do what's best for you - it's so silly how we think we have to have a list of things achieved by a certain amount of time when we all know how unexpected life can be. I think I'll write more about this specifically to transplant but one plan isn't going to work for all of us! We're not made in a factory line, we're individual and all have our own unique journeys in life. Now if I could just take my own flippin' advice...

Sharing The Love

Coat | Uniqlo ()
Cardigan | GAP ()
Tee -
Jeans |
Shoes |
Necklace | Whistles ()
Bag | Kate Spade

A very casual look but it has been a long while since I wore a red lip sooo...kinda made an effort, no?  

Instead of rambling on about nonsense today I want to tell you about sharing her personal experience of organ donation. I think it was such a brave video for Claire to make and it made me emotional as it got me thinking about my own family. I was the lucky one as I don't remember much of the last week before I got my new lungs. Like I remember being a bit out of it asking my best friend if I was dying because I had my funeral plans in a hidden place and wanted to let someone know where they were  - she said no (the little liar) and we shared a pizza but I will never forget the look on her face. The look on everyone I loved faces during that time actually. I haven't spoken much about the time I was on ECMO because most of it is a blur but over the past few months memories have been coming back to me out of the blue. Actual ECMO is still a complete blank but I'm starting to remember conversations and just how everyone was trying to keep it together. They were brave and never showed me how scared they were but it must have been absolutely horrible, it's not something they will really discuss with me even now. Sometimes I feel like the recipient's families get a little forgotten about when organ donation is discussed but they really go through it too, just as much I'd say if not more so. I know I would go through everything again rather than see someone I love get that ill.

It was so interesting and different to hear from the perspective of a recipient's family and I'm so pleased Claire has used her platform and huge audience to raise awareness of such an important topic - I think it must have been very hard to film! It's a long video but an excellent one and I urge everyone to watch to see how organ donation doesn't transform just one life, but many. So go and share the love by !

The Happy List #12

So last week was a little bit sucky in parts, I had to go to hospital on Sunday for a CT scan and then had a bronchoscopy and biopsy booked for Tuesday. Except it got cancelled so I ended up having to stay until Saturday because I had it done Friday (I couldn't go home and come back or I'd lose the bed.) I'd explain the whole situation but it's loooong and also I'm sick of talking about it haha. but it's because I caught a bug on ECMO I need to be kept in isolation in the hospital. So it's difficult for me to get appointments and treatments that I need, even though I am now free of this bug. As much of a pain as it is it didn't affect my health, which is the good thing...I just hope one day there'll be a better system so I don't risk missing out on appointments and scans etc because obviously that's a bit of a worry. It feels absolutely silly to be writing about this after so much going wrong in the world lately but I just thought I'd give you a little explanation to demonstrate how life post-transplant isn't always an easy ride for a whole number of reasons! However there were also some lovely moments last week and I think it's important to remember them in times like this, to remind ourselves that there is good in the world.

Pin from

1. Mum discovering YouTube. She said if I was bored to go on it, 'you type in any song you want and there it is!' My heart couldn't take it, she is so pure.

2. Minimalism documentary. I watched this on Netflix and whilst some of it was a bit too extreme for me I found it super interesting to find out more about the concept. I actually have a whole post on this coming up (yes, really!)

3. Journey into Uxbridge. I'd not really explored the area around Harefield Hospital before so used my 'holiday' there as an excuse to check out the local shops (of course!) Was very good though and didn't buy a thing 💪

4. Reading. It was also an excellent chance to read some books, I read three in 5 days and I can't remember the last time I did that! I'll be reviewing them all on here I'm sure.

5. Kindness from staff. Like I said, the people at Harefield are amazing and the doctor was actually so kind to me I cried because I'm a massive sap!

Earrings made by me

6. LaLa Land. Because I was sad my stepdad came all the way to Harefield to take me to see LaLa Land and he hates the pictures 💖 the film was brilliant, when the opening sequence started I was thinking 'Oh gawd, this is gonna be horrendous!' but after that I loved every second. I don't think it'd have been half as good were it not for Emma Stone and Ryan Gosling (I love them both so much I went to see Gangster Squad and that was an awful, awful film.) They're not annoying (like half the cast of Mamma Mia) but they're not truly crap either (see: half the cast of Les Mis) which is what I think made it bearable. I am not a fan of musicals one bit usually but I would watch this again and again. Plus I think even my stepdad liked it because he didn't fall asleep! When I got back to the hospital the HCA asked me where I went and he said he'd been to one film in his life and he can't remember what it was. How is that possible hahaha!

7. Zizzi. We also went to Zizzi that day, I hadn't been for over a year so it was great to just eat all pasta. And the lemon meringue sundae - YUM.

8. Bronch. Well the best thing was the bronch all went well, I had in done in the theatres and I hadn't been there since I had my transplant so that was a bit strange (it's the only day I remember crystal clear over a period of about three months!) I saw a doctor I hadn't seen since ICU, I like seeing people from those days so they can see that I'm not actually a lunatic haha.

This jumper is now on depop!

9. Bad lip reading. I wish I could say I spent all the free time I had this week productively but the majority of it was spent on YouTube (I took my mum's advice haha!) watching people do that acapella thing and, which is one of the funniest but silliest things on the internet!

10. Depop. I've finally uploaded bundles of stuff on my depop, with lots of stripes, grey jumpers, denim, sickchickchic (of course) if you fancy having a lil' look. I'm open to offers as long as they're not silly haha!

Did you have a good week? I hope there were some happy moments amongst all the horridness - let me know!

Six Month Update

January marked six months since and I don't know about you but I feel like time has flown by! Although it feels like less as I was in hospital for two months then spent another month at home recovering and getting my bearings if you will. But I thought I'd do a little update on how life currently is!

First things first, physically I'm doing well. I had a bronch where they just had a little look at what's going on in my lungs and also a biopsy where they took a little piece of lung to test. All very routine, the bronch came back fine and I'll get the results of the biopsy next week. I'm also on a hella lot of less meds than I was, there's still a fair few tablets to take but I now just do two nebulisers a day when pre-transplant I would have to do at least seven. The very best bit is no more chest physio, this is just amazing. I would spend literally hours a day doing breathing exercises to clear crap out my lungs but still there would be more - it's like trying to get water out of a sinking ship with a hole in it, y'know? But since these newbies are all clean and clear I don't have to do that. To be free from physio is so incredible, it's all I've ever known so to experience life without needing to do it is like a dream come true.

This cutdown on meds and treatments does mean that I often feel like I've forgotten something, like not brushing my teeth or whatever. I've had this treatment regime since I was two years old so it's a massive thing to have it all change - it's just a bit surreal! Now I never cough, when I used to all the time. No more throwing up from coughing, no more fatigue, no more sticky feeling lungs. Instead I've joined a gym(!!!)

For the first time in my adult life I feel 'normal'. It's brilliant but if I'm to be honest with you it's also a little bit scary. In theory it's easy to say 'CF won't stop me!' and while a strong mentality is vital in getting through life with CF, the truth is no amount of positive energy is going to stop the fact that you can't bloody well breathe. It's not going to cut down the amount of time you spend doing treatments or the weeks spent in hospital attached to various drips. CF is a needy f*cker that demands to be heard at all times. Sometimes you can ignore it, often you can't and as a result you can miss out on life experiences that everyone else just takes for granted. Occasionally, especially as I got older, I did feel like I was missing out on life. The best way I can describe it is when I was end stage CF I felt a bit stuck on the riverbed watching everyone else swim along. They were all moving forward, I was not. But now I can join in and as excited as I am it's still nerve-wrecking because it's almost like leaving...I'd say 'comfort zone' but 'comfort' isn't the right word to describe end stage CF. I suppose my little bubble, if you like. So when I do fully join in properly I might not be swimming smoothly, I was worried I'd be a bit like up the creek without a paddle...but one thing I've noticed is that we're all just splashing about really, hoping for the best. And I think that that's the exciting thing about life, you never really know where it'll take you.

So I have plans, they may work out or they might just go up in flames but I feel so grateful that I'm even here to attempt these things I'm not as worried as I might be. All I know is I want to make the very most of this extra time and I hope that I can do my donor proud ♥

I'll leave you with some pics from the last few months, all fun memories I wouldn't have been able to make if it weren't for organ donation!

Lots of fun times with Baby Florrie, including her second birthday

Lots of silly nights with my best girls

There's literally so much more I could add, every day is truly a blessing. Here's to lots more fun in 2017!

2017 Goals

anthropologies aries notebook

I think I'm one of the few who can truly say they'll be a new person come 2017 ;-) Not only have new lungs given me a literal lease of life and a new way of feeling, I have a new way of thinking too. We're told every day to 'live in the moment' etc and having an illness like CF has meant I've always preferred to take each day as it comes. I made plans but rarely saw them through because I'd get ill and have to cancel. Kept trying though, cos God loves a trier ;-) but now for the first time bad health isn't likely to put a stop to things so I'm looking forward to putting some dates in the diary!

At the same time I'm more aware than ever how quickly it can all end, you could say almost dying can give you a new perspective on things! At the time it wasn't actual death that frightened me because ? I was more worried thinking about the things I hadn't done or seen or been, that's what scared me the most - it's like that famous quote, 'everybody dies but not everybody lives.' I'm in such a rare and privileged position to have this second shot at life so I want to make the most of every moment! It wasn't a guarantee but while I had end stage CF there was always that glimmer of hope of transplant but now this is it - there is no 'back up plan' if you will, no more last resorts as transplant isn't a cure. I don't know how long I'll get with these new lungs, no one can know so in a way you're a bit of ticking time bomb. A frightening thought but a fear that I think can be turned into something positive. It scares me into experiencing new things, meeting new people and not letting silly thoughts hold me back. Feel the fear and face it anyway and all that! That may be my 2017 motto ;-)

There'll be heartbreak, anger and disappointment because that's just life, but on the whole I think I have a bloody good deal and that life will be very good indeed. I've never felt so happy, confident and excited, I feel like it's how things were always supposed to be and I'll forever be grateful to my donor for allowing me to experience life like this.

anthropologie aries notebook
Not bad buzzwords for 2017!

Saying all that, there's still a big list of stuff I'd like to do! It doesn't matter if I don't tick them all off, it'd just be nice to have some sort of action plan.


* Learn to drive. Been a resolution for far too long and now I have no excuse!

* Relaunch Frojo Designs. I loved running my little Etsy shop so I'd really love to set it up again! It was so much fun.

* Do a course of some kind. Where I got ill I feel like I'm a few years behind everyone else sometimes, especially career wise so I think I gotta sort of give myself a boost somehow!

* Carry on blogging. This is the longest I've ever committed to anything haha so I'd like to carry on writing this little blog of mine, even if it is just for fun. Keeps me occupied anyway!


*Be tidier. I know, I know - almost impossible! But I've got to stop being so messy. 

* Be better at keeping in touch with people. I am bloody useless at this, always think I gotta text so and so and before I know it a year has passed!

* Speak up. I used to be terrible and would barely speak to anyone and even now I often drift off into my own little world, even if I'm with company. I've gotten way better but can still completely put a wall up when I meet people. I'll never be the loudest person in the room and that's ok but a lot of people mistake me being a bit of an introvert for rudeness or snobbiness which is the last impression I want to give off! I'll write more in depth about this topic another time but for now I just need to try and not be as quiet.

* Remember that no one is perfect. I think, no I know I can be a bit harsh in cutting people out. I'll be completely trusting until someone pisses me off and then that's it, I'm done. Maybe I have too high expectations of people, I dunno. Not everyone deserves a second or even third chance but I do need to be a little more forgiving sometimes.


* Organise a blogger meet up. Been saying this for ages but it'd be cool to sort out drinks and dinner or something with a bunch of bloggers, just for fun! Let me know if you think it'd be a good idea :-)

* Get my ears pierced. I think I just want the lobes done again but we shall see!

* Organise a girl's trip. We're thinking Brighton seeing as I can't travel abroad yet! We've been talking about it for ages so it's time to actually sort it.

*Meet an alpaca! I say they're my favourite animal and I still ain't met one. Might not even like them in real life.

*Climb Muckish. It's in Donegal, Ireland where my grandparents live and I feel like nearly everyone has climbed it but me! Time to conquer haha.

There's soooo much more I could add but seeing as this is a monster post already I'll leave it there!

We might not stick to our resolutions but it's a positive thing to start the year with good intentions ;-) I shall take this opportunity to wish you a very happy new year and also a friendly reminder that (you're welcome!) What are your goals for 2017?

The Happy List #7 | Christmas Edition

Hi! How was your Christmas? I would've done a bit of a Christmassy post but I didn't take many photos - too busy eating of course, plus I was just having loads of fun. Last year I spent most of the day on the sofa attached to an oxygen machine trying not to vom/fall asleep, this year I was swinging a little cousin around like a monkey (see evidence below) Part of me doesn't want to say how amazing the day was because I know it's a tough time for a lot of people etc but at the same time if I didn't I think I'd be doing a huge disservice to my donor, their family and also my family as without any of them I certainly wouldn't have been here to celebrate. It was such a special day, we all celebrated it together for the first time (there's about 20 so of us so there's usually at least a few of us missing!) and just kind of toasted the end of a horrible year and the start of a new life. 

We had too much fun with the self timer.

1) Christmas Eve. Christmas Eve usually draaags but I kept myself quite busy. I went shopping with my mum in the morning for some last minute bits, attended Christmas Eve Mass (although I find all religion very problematic, but that's a whole other rant!) and then went out for a meal with my family which we never do the day before Christmas. Before I knew it the day had flown by! 

2) Christmas Morning. I stayed in bed til half 10 just to wind my brother up, I could hear him complaining and was just lying there like *mwahaha* but eventually I put an end to his torture and got up. We had a fry up then opened presents, I'll try and get a post up on what I got because I know you're as equally nosy as I am.

3) Baby Florrie. She's nearly 2 now so was very into it all this year - she kept saying 'Wow, I'm so excited!' 💗 She spent the whole day with us (as well as her mama and dad of course) and it was so special to have them there. My mum bought her a doll's house and we spent hours the day before setting it up and playing with it haha.

4) Christmas day/evening. We went to my aunt's house for dinner which was super yum and fun! I would say I ate too much but we all know the limit does not exist in the whole month of December. I love my family loads, we're lucky that we all get on so well and are really close.

Gym is paying off ;-)

5) Jack Daniel's. Turns out prosecco is not my friend (screw you, man) as I reacted oddly to it but was absolutely fine with JD which is my favourite so it's all good!

6) Love, Actually. We never watch TV on Christmas Day but ended up watching this for the millionth time - my favourite story is the Colin Firth one, what about you?

7) Boxing Day. I took Freddydog for a walkies in the morning, it was completely dead out which was kinda nice because it meant we had the park to ourselves! Then we went to my aunt's to nick the leftovers from the day before and we also played The Logo Game. It was actually painful because we were all so crap at it it took us hours to finish the game.

8) BINGO. We went a few days before Christmas and I only went and bloody won haha! I got to one number left for the full house and my palms were all sweating because I was thinking I was too shy to call out if I won but when I did obviously I was like 'IT'S MEEEE!' hahaha. 60 quid, not a bad Christmas present.

A new pal!

9) A long walk. Me and Freddy went on a 6 and a half mile walk - by accident, since we got lost but still! Was amazing considering this time last year I couldn't put a pair of socks on myself, in fact four months ago I couldn't even walk so it feels like a miracle. It's times like this when it really hits me the gift I've been given. We found Eltham Palace, where Henry VIII grew up. It's so close but I'd never been and need to visit it properly! We also stumbled across loads of horses and donkeys and walked through the posher streets where the houses are mahoosive but pretentious - one is called 'Wuthering Heights' hahaha.

10) This whatsapp. I don't know who the culprit is but I pray for them! 

So I hope you've had a good week too and will enjoy the last few days of the year! I've decided to try and post daily still because Blogmas gave me my blogging mojo back. I used to like posting outfit pics every day, I know my photography ain't exactly #goals but I feel like 2017 will see the return of the old skool blog (or at least I'll be trying my best to revive it in a world full of professionals haha!)

Blogmas Day #24 | This Time Last Year

So let's do a little rewind to this time last year - it was the last day of a two week course of intense IVs (4x a day attached to a drip for 2 hours at a time at least) and just before that I'd been in hospital for nearly two months. It wasn't long after I'd been told I needed new lungs but it was before I found out whether I could actually be listed for transplant or not so I was stuck in this weird limbo. Despite it being the most wonderful time of year, I was not in a wonderful place mentally. I was so scared, wondering whether this would be my last Christmas. So I tried my best to enjoy the day, thinking that if it was going to be my last one I'd better make the bloody most of it and whilst I had fun (because my family are the best) the anxiety and worry was still bubbling underneath the surface, I think it was for everyone to be honest. I spent the day attached to my oxygen machine, unable to eat much and trying not to fall asleep all whilst feeling like absolute poop. 

But how different this year will be! People say transplant is life changing but after a lifetime of being ill I just couldn't quite imagine just how good things would be - I've honestly never experienced life like this and sometimes it just doesn't feel real. This time last year I got out of breath putting my shoes on, yesterday I went for a 6 and a half mile walk with Freddydog. It was by accident because I got lost, but still! I was not one bit out of puff, the only thing that slowed me down was my legs getting tired towards the end just like anyone else's would. And that's just something 'small', imagine when I can do even more (although we all know the little moments are really the big ones!) But tomorrow I'll be playing with Baby Florrie and my cousins without oxygen tubes getting in the way and the only reason I'll be feeling sleepy is because I'll have stuffed my face with ALL the food. I cannot wait!

I've seen a lot of people saying how 2016 has been the worst and whilst a lot of awful things have happened I'm ending the year with more faith in other human beings. Yes, there are bad people in the world but there are also, far more I believe, amazing heroes that you just don't hear about. People like the hospital staff who looked after me before, during and after transplant. My loved ones, who stayed by my side throughout everything. People who I've only 'met' online and people that I've never met at all sending all their love and kind wishes. And people like my donor and their family, who chose to save the life of someone they've never met. There really is no greater gift to receive and tomorrow I'll be raising a glass to them and being extra thankful for what they've done for me, Like every day, I won't be forgetting that without them I wouldn't be here now. 

So for my last post for blogmas I'd like to wish you a very merry Christmas, whether you celebrate it or not I hope you still have a happy day - life is to be lived and we must all make it a day to appreciate what really matters in life. Not presents, as fab as they are, but love. Sorry for the cheese (did someone say cheese? 🐷) 


Letting Go Of Guilt

Within the emotional rollercoaster that is transplant, I've been left with an overriding sense of guilt. As incredible and life changing/saving it is, transplant is also one big mindfook and while I was, am, so grateful and happy part of me was also feeling quite traumatised by the whole ideal which left me feeling guilty. But now it's time to let that go.

Certain types of guilt I'll never let go of - guilt over 'surviving' especially, which I think is natural even though it's not exactly logical. But after about a month of being home my mood started to dip, which I expected but was still quite unprepared for. I just wasn't happy, I found it hard to eat or sleep, I lost interest in most of the things I love to do - in short, I wasn't myself. I was just consumed with thoughts of what had happened, trying to piece together the days where I can't remember anything at all. This made me feel bad because I felt like I owed it to the people who love me, the people who didn't/won't get their calls in time, the doctors and nurses who helped me and of course my donor and their family to be the happiest I could be. But transplant is a huge thing for anyone and mine wasn't exactly 'straightforward' ) so it's almost inevitable I'd be left feeling like 'woah' afterwards. Some of it was so horrible my brain has completely blocked out days of my life! I was quite literally at death's door with not long to live and while we'll all be there one day to be face to face with it and survive is a big bloody deal. 

The thing is though I don't really like to make a big bloody deal out of things. I don't like the attention and the 'woe is me', I like to laugh at life no matter what and just generally have a good time. I'm quite good at compartmentalizing feelings and shutting the bad ones away in a little box. But as hard as I tried they just wouldn't stay locked away which is why I got as down as I did but I was afraid to tell anyone because I didn't want to sound ungrateful for all the good that has happened to me. In fact I still haven't told anyone, apart from you. I was feeling guilty for being caught up in the past when I have quite literally been given the gift of the present, I most certainly wouldn't be here now were it not for my donor. That in itself is an overwhelming thing to think about. But as I said, transplant is an extraordinary thing in so many ways so to have such a wide range of emotions in perfectly normal. Nothing in life is black and white so I can be feeling scared and upset at the same time as being overwhelmingly grateful, happy and excited for the future. 

I'm feeling much happier now but basically my point is I'm not feeling sorry about my emotions any more and no one ever should. I think you can't help how you feel and trying to block 'negative' feelings out does you no good. So it's time to let go of the guilt and go with the flow because it's all just part of life. I know this is all a bit of a ramble but it was all written in the middle of the night when I couldn't sleep (thank you prednisolone!)

A Busy Week

Hello! So last week was really busy, I think I probably shouldn't have made it quite so jam packed actually so I'm gonna be a bit more sensible and relax for a few days at least. I've been too busy to even blog and that hasn't happened for so long! But even though I've been a bit preoccupied I've been feeling a bit iffy mentally, which I'm assuming is just girly stuff because that came back this week after a year. Totally TMI for an opening paragraph of a blog post but it makes me happy because the reason they stopped was because I got so ill so it's a sign of healthiness and that's why I'm letting the world know ha. But don't worry, I do have more exciting things to tell you too.

Freddy, because he's not been on here for a little while!

On Monday I went with my little cousin to Port Lympne Animal Reserve, I actually have a whole post on that later so I won't ramble too much but I SAW A BUBBA GIRAFFE. So cute, so tall. It poured with rain but we still really enjoyed it and I'd like to go back when the weather isn't as rank.

On Tuesday night I went out for dinner (first restaurant meal post transplant!) and had Harefield on Wednesday, it was quite good because I saw the main man who I haven't seen since I was in so he was very happy to see me looking more presentable and not acting like such a nutcase. I also saw the physio who unfortunately had to put up with the brunt of my sobbing fits before so she was pleased to see me looking more normal too. Anyway the doctor crossed off some meds on my list so I now take 21 less tablets a day, which I was rather pleased about.

Thursday I did what I thought was the bloody impossible and joined a gym. Me and my friend were there for half an hour and then went to Costa, I also fell off the cross trainer but the important thing to  know is no one saw and to always remember is that God loves a trier! I actually ended up hurting myself so haven't been back since but I will try and go next week. It's not the exercising that I dislike, it's the gym itself - I'd prefer a class or just doing my own stuff at home. Then on Friday I was supposed to rest but didn't really because I ended up going down the high street - did find Pretty Honest in a charity shop for £2 though!

This weekend was really good, I had my first post transplant night out with my two best friends, in fact it was the first time we've been able to go out together this year so I was kind of buzzing! We ended up going a few different places and had so much fun, I must admit I found it difficult not drinking - I'm never usually bothered but it's because I knew I couldn't I obviously wanted to! Then on Sunday I went to see Bridget Jones' Baby finally with my cousins who I haven't seen for a couple of weeks so that was luverly. Lots of laughter this weekend!

So yes, been very busy so probably best to be more sensible this week and take things easier. I just want to take these new lungs everywhere! I hope you had a great week too.

Three Months

So yes, as you might have gathered from the title I am three months post transplant this week! It's weird, it seems like I had it done yesterday but it also feels like it was ages ago. I've been home just over a month and all is going good, I didn't even have clinic this week as they've been changed to fortnightly visits now which is great! Three months also means a little more freedom so I celebrated by returning to my favourite place, the shops. I didn't even buy much, I was just so happy to be back in my natural habitat (also I've spent a bomb online recently, plus I got a new laptop eeek!)

My new pal at the park - still ordered duck for dinner though :'-(

I feel more like myself now, like I have so much more energy - physically I do but I still have a good way to go yet and have to make sure I rest a lot but also mentally. Maybe because I'm still buzzing that I have this new life or maybe this is how I was supposed to feel if crappy lungs didn't make me so tired and ill all the time. I feel like how I felt a couple of years ago, I can really tell just by reading blog posts from the time how much happier and carefree I was! I think being in hospital all the time and getting listed for transplant over the last year got me down more than I realised. But now life is SO good, the only way I can think to describe it as is freedom. I mean transplant isn't a cure, the rest of my body still has cystic fibrosis and I still take medication but just not being tethered to a blimmin' oxygen machine all the time is a huge deal! Yesterday I went to the park with Baby Florrie, she's nearly two and I don't think I've been able to do that with her properly before without getting too out of breath, having a coughing fit and throwing up lololol. But we played, I walked up mini hills and didn't have to sit and stop once so yes, it felt like freedom. Free as a bird! I'm just so happy.

I'll tell you how happy I am these days, on Friday night I went out to eat at a restaurant (first time post transplant!) and the waitress dropped a pot of salsa all over my beloved camel coat and even worse, INSIDE MY MULBERRY BAG. But I wasn't even mad, a state of shock maybe ;-), but there were no tears. Only from the poor waitress maybe, she was mortified. They said they'd pay for the coat dry cleaning but I'm more worried about the bag because it's all over the lining and I think it'll go mouldy which I don't think will be very good for these shiny new lungs of mine. So wish me luck when I go back there in the week with a whopper of a bill for that!

See, look at life now - the biggest problem I have is salsa on my bag!

P.S. There's a post on the NHS Organ Donation Facebook page about my transplant and also do a girl a favour and share pleeease to get as much awareness of organ donation as possible :-D

The New Me

So this post may be a little misleading as it's not actually about my new hair, I mean I did go and get it done but I just got a trim and layers so it basically looks the same apart from a bouncy blow dry that got ruined by the wind as soon as I stepped out the hairdressers. Was nice while it lasted though, I was like that annoying Cat Deeley advert where she's all swissssh. 

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On Friday I had my weekly appointment at Harefield, everything is looking very good so far! In fact appointments should now be every two weeks instead if things carry on going well, so that's good progress. I saw a lovely registrar who I hadn't seen since I was in, she barely recognised me which is always makes me very happy when that happens because I looked rough as hell in hospital and I was a crazy lady too. She gave me the go ahead to start venturing out a little more now as next week I'll be three months post transplant(!!!) so it's a little safer to go to busier places although I'll still have to be super careful, especially as everyone gets ill this time of year. So tomorrow I'm going actual shopping in the actual shops which I'm super excited about as I haven't been since April! Just a nice bit of normality :) even though I'm supposed to be on a clothing ban, oops. 

This week I also got to see an X Ray of my new lungs, I think they look soooo beautiful. Here they are compared to my old ones, look how lovely and clear they are!

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All that metalwork is where I had spinal surgery to correct a wonky back when I was 14 - not CF related, just another one of those things!

So the top two are my old, CF lungs, the white cloudy patches are where my lungs were damaged - so as you can see, they were pretty knackered! The bottom two are my shiny newbies, looking at them I almost couldn't believe it because it's been years and years and years since my chest x ray was so clear. It's an incredible difference, sometimes I feel so overwhelmed at the fact that I can actually breathe. What an amazing gift I've been given, I don't think I'll ever be able to say how thankful I am enough times. 

Talking of misleasing, I'm still recovering and the rest of me still has CF but I was thinking this week that before I was a very 'sick chick' but now I'm so much better! The blog name is almost a lie haha! I'll be keeping it the same though as it's pure hassle to change it all plus I'm quite used to it now! Anyway I hope you've had a fabulous week,

Life Is Sweet

This is an outfit from last week, I've been squeezing out the last remaining life of my summer wardrobe as it didn't get much use at all this year () The top was something I ordered from Lewisham Hospital but it was during that week that my brain has blocked out so I didn't remember ever buying it. Well done past me though because I absolutely love it, I'm pleased to know I still had it in me to have the willpower to shop despite how ill I was haha. You can't see it here but it has this gorgeous button detail down the back and these pretty little frill things at the hem, plus the colours remind me of sweets so all in all it's my dream summer top.

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topshop stripe mix n match tee, aos denim dolly button through skirt, mulberry bayswater bag outfit, cystic fibrosis transplant blog uk, uk fashion blog, sick chick chic blog
topshop stripe mix n match tee, aos denim dolly button through skirt, mulberry bayswater bag outfit, cystic fibrosis transplant blog uk, uk fashion blog, sick chick chic blog
topshop stripe mix n match tee, aos denim dolly button through skirt, mulberry bayswater bag outfit, cystic fibrosis transplant blog uk, uk fashion blog, sick chick chic blog
Top |
Skirt | ASOS ()
Shoes | GAP ()
Bag |
Earrings | New Look ()

I forgot to tell you how things went at Harefield! I went last week for my appointment and everything was A-OK, woop woop. X Ray is clear, bloods are good, lung function is going up and everything seems to be going in the right direction even though it's still early days yet. I saw one of the consultants and she's delighted with how it's going so far, she was really nice because she was asking me how my brain is doing haha. It was kind of her to ask because I went bloody loopy in hospital, if I wasn't hallucinating I was crying uncontrollably and even now there are things that I'm not sure were dreams, hallucinations or if it even happened at all. It's still healing where the ECMO was done but I don't remember having that so when I see the plasters I do feel a  bit weird, kind of like when you get a massive bruise but you don't know how you did it but just on a much huger scale. This is all a new experience for me because I'm such a square, I prefer to be in control of myself if that makes sense so to have chunks of memory missing makes me feel a bit uncomfortable. My brain obviously blocked it out for a reason but I keep trying to fill in the blanks and I just can't, this is exactly how I felt doing my Science GCSE's haha. I'd like to know what happened just out of curiosity more than anything but I've been trying to stop figuring it out and just concentrate on what's happening now. Life is so great at the moment anyway so I want to enjoy every second! 

Everything is so amazing now during recovery, imagine how great it's going to be when I'm doing even better! It blows my tiny mind. 

October Goals

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, but it's always good to have a focus, even if they're small aims. Everyone gets excited in October because 'Woo, autumn!' but I'm even more hyped because this month I'll be three months post transplant. A milestone anyway but it also means I'm loose from the hoose! For the first three months you're advised to avoid busy places and while I'm still going to be super careful because tis' the season of colds and flu, I'm going to start going out to places like restaurants and the cinema when it's not too packed. Also, shopping. Normal things really, but they'll be exciting to me because I'll be oxygen-free so no worrying about whether the canister or concentrator is going to run out! No tubes up my nose, no wheelchair, no staring, I shall be as free as a bird. Here are some other things I'm aiming for in October:

1. Get a haircut! Because of being in hospital I think the last time it got cut was April. Just stupid I can go through a double lung transplant and I'm still scared of the hairdressers...

2. A trip to the cinema. I'm still a bit paranoid about going just yet as they're pretty germy places packed full of people but I'm thinking if I go in the day time it'll be fairly empty and I'll bring plenty of hand gel with me! There's so much I want to see, if it's still showing Bridget Jones' Baby is first on my list and I think The Girl On The Train is out too. Any recs?

3. No more shopping. Even though I just said this is the first month I'll be able to go, in fact I think this year because of being ill and being in hospital I've been in an actual physical shop maybe five times? But yeah, I've taken the 'treat yo'self' mentality a bit too far lately so time to curb it a bit.

4. Blog more! It'll be good to get more outfit posts up (even though I'll probably still stick to mirror selfies, sowee!) but I'd like to include a bit more of everything if I can and hopefully post 3-4 times a week. We'll see though, as I get a bit knackered still and just want to relax and watch The Wire. 

5. Make Halloween cakes. I'm not too fussed about Halloween but any excuse to bake and eat cakes. I'd like to get cooking a bit more in general really, I've done a little bit since I got home but there's loads more food I'd like to try and make now I have more energy.

What are your plans for October?

A Significant Day

Today is quite a 'reflective' one for me, it's exactly this date last year that I had my assessment at Harefield and they told me that I needed new lungs. I remember that day so well! I just cried and cried and was sad up until Christmas Day when I cheered up because, well, Christmas. If only I'd known that exactly one year later I'd be sitting here with shiny new lungs, recovering well with the hope of an exciting future ahead of me! this week I walked in there on my own two feet with no tubes up my nose. I climbed stairs too, I still can't get used to it sometimes. 

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At The Old Orchard, Harefield. All uphill and a flight of stairs, both of which would have been a real struggle before but now the only thing slowing me down are my wobbly legs! Recommend this place in you're in the area btw, and

I was there for clinic, it was a bit of a faff actually because of this bug I have I need to be seen on the ward rather than in the actual clinic. I was booked in for 9am Monday but there were no beds til one so it was too late to have bloods taken by then and because of that they made me stay in that night so no one would steal the bed. ONE WAS NOT AMUSED. It wouldn't be too much of a big deal but I'm not allowed to use the bathrooms in case I spread my germs haha so they make me use a commode *major cryface here* I mean I know there are far worse things to deal with in life but it just brings me back to being ill so I sit there peeing trying not to have  a panic attack lololol. I'm sure I'll get used to it though, I have to because it looks like that's how hospital life will be for the foreseeable future! Anyway they did the bloods the next day and all was fine, I had a nuclear medicine scan on Wednesday which wasn't as exciting/dangerous as it sounds and then me and mama made our merry way home. 

This week also mark a year since I saw Florence And The Machine, significant seeing as she is my queen/hair idol/everything. I'm definitely going to see her again, except this time I won't have to sit down with an oxygen cylinder or - in fact I'll probably be the asshole because I'll be treading on people's toes and spilling my drink everywhere because I shall be dancing like a loon. I really wanna see Kings Of Leon tooooo. Anyone you really want to see? 

My Transplant Journey - Part 3: The 'Blip', Moving Onto Rowan Ward & Home!

* & * So in the last post I was doing well and was on the up but then the 'Blip' happened. Basically the night of the day the trachy got removed I 'plugged', meaning a load of yuckness was still in my chest and blocked my airways so I couldn't breathe. The nurses were brilliant and got the doctors in straightaway, I remember being so scared but one of the doctors held my hand, explained what was going to happen and then I was sedated - I think it all happened very quickly! When I woke up on Friday I found myself in this situation.

The most bee-yoooooo-tee-ful selfie I ever did take.

This is a ventilator to help me breathe as the 'Blip' occurred on a Thursday night and they weren't able to put the trachy back in until Monday so I spent all of that time awake with a tube down my throat unable to speak, eat or drink again. Needless to say I was not happy. I had a laminated sheet of paper with letters on and I kept spelling out 'T-O-R-T-U-R-E' pahaha. Usually people are sedated on this thing so it wasn't the best weekend I'd ever had but Monday soon rolled around and the trachy was back. 

It wasn't long until the speaking valve was back so I could talk and eat again and I progressed so well they removed all of my lines apart from the trachy and I was sent to Rowan Ward, which is the transplant ward. I was still having one to one nurses, people had to still gown up when they came in the room because of this bug and infection control and I had daily blood tests but things were a lot more relaxed here. There was an outdoor area just outside my room so I was able to do my physio outside which meant I was able to move around more and also sit outside as long as my medication wasn't due. I even got to eat my dinner out there. I had really lovely times outside with my family and friends too, including baby Florrie! I have lots of photos of them but I don't know if they'd want to be on here haha but as you can see I had a very VIP visitor too!

I was much happier when I was outside!

My Freddydog!

He completely ignored me but still, it was nice to see him! I was making progress in that I was able to move about more and the doctors were super happy with my new lungs so I should have been happy too but I wasn't. For the first couple of weeks on Rowan I'd had the worst anxiety and I couldn't even say what was causing it, I just felt so frightened. I kept crying so much, not just a little bit either -  I've never suffered from anxiety and panic attacks like that before, it was so scary and I feel so much for people who have it on a regular basis. I think it was a mix of the medication playing havoc with my brain still and everything just catching up with me. I'd began having a bit of anxiety back in ICU but this was something else and it was like I couldn't control myself - so not me. But I think it was not surprising looking back considering everything that happened! 

It did ease off during the last week, I'm sure if I'd not been able to go outside as much as I did (I literally spent hours out there!) my anxiety would have been far worse and recovery would have been longer. I managed to walk and do basic tasks on my own without help or any kind of aids which felt amazing! Just the little things like getting off the bed or dressing by myself was such a relief. I'd also moved on from the zimmer frame and was using a walking stick when I walked outside. Then one of my favourite doctors came and got rid of the trachy for me, he took my photo to send to the Brompton to show them my progress as they'd only seen me on ECMO. Of course I'd be wearing the worst outfit in the world when he took it...I'm so ashamed!!

My family absolutely will never let me live this down!

I met the transplant clinic nurse, the pharmacist went through all my drugs with me and I began self-medicating - all things to help me get ready for home! A bit scary but I definitely felt ready, plus they were only a phonecall away if I had any questions or worries. So on the 8th September, just under two months after my transplant I was home! I had to come back the following Monday for clinic and I'll be going back there tomorrow for clinic again but being back in my own bed is amazing. Since I've been back I seem to have gotten stronger and every day am finding it a bit easier to do things. I'm still not back to my normal strength and have been having bad pain in my feet and legs but yesterday I walked down the road to the shop with Freddy, stick and oxygen free which just didn't feel real. There are so many 'pinch me' moments now and this is just the beginning of my recovery. Who knows what I'll be able to do this time next year? 

I loved life before but now I appreciate it more than ever and I really do understand just how precious it is. I was so, so lucky to get my new lungs as so many don't get their second chance - it truly is the gift of life. I find it hard to put into words how thankful I am because nothing sounds good enough. Thanks to them and their brave family for agreeing to organ donation I now have a chance of a future and get to spend some more time with my loved ones. It's just an incredible thing and I'll always be so grateful to my hero donor. 

I've done three mega posts on this but I still feel like I've missed loads out! It's been kinda draining to go through it all again but I'm still happy to answer any questions as best I can if you have any. But I'm sure I'll be talking about this in future posts too!

My Transplant Journey - Part 2: The Op & Intensive Care

*If you missed Part 1 * So I left off when I was transferred to Harefield Hospital from the Brompton on ECMO. I was sedated on the way there and vaguely remember waking up at Harefield but the next couple of days are wiped from my memory! I can remember a little bit of the day of my transplant and I remember a lot of my month long stay in the intensive care unit although mainly the bad bits but it's not something I like to dwell on. So I'm sorry if I'm a bit vague about things!

I'll just quickly explain a couple of things, firstly my transplant was classed as 'urgent' as I was on ECMO, was very unwell and was already at Harefield. Usually people receive 'the call' when they're at home and while I don't like that it put my family and friends through all that by being ill in a way I feel like things sometimes happen for a reason. I'm kind of glad I wasn't at home or something because I didn't have to go through 'false calls' and I was already at Harefield, which is one of the very best hospitals in the world. Secondly, while I was in the Brompton I picked up this bug called candida auris (which sounds like a Harry Potter spell to me!) on my skin, although I'm not sure if they found it before or just after my transplant. Before you're like 'Ew, you unclean germ!' we all have bugs on our skin that most of us aren't even aware of - it's only when you're unwell or 'vulnerable' that they can be a problem. Fingers crossed it hasn't caused me any problems as luckily it hasn't gone into my bloodstream but it meant everyone has to gown up when they treat me at hospital and I have to either stay in my room or go outside. I'm not allowed in the cafe for example or more importantly I'm not allowed to go to clinic either and have to be seen by doctors in an inpatient room on the transplant ward. I completely understand this as the bug is very resistant to treatment and it's not something I'd want to pass onto other patients but it's just a very frustrating thing to have. It doesn't affect me whatsoever at home or when I'm out in the 'public' as they say, but it does affect hospital life quite a lot. The doctors are hoping I'll be cleared of it or that it might even be gone already but I just thought I'd explain as again it's something that has made my transplant story perhaps a little different to others. Not that any two people have the same story anyway!

 Anyway I don't remember but I've been told I'd still been a bit distressed up until the evening before my transplant. My cousin said she'd been to see me and I was so calm, I don't remember that either and the next day is mainly a blur too. But I remember waking up in the morning and feeling so relaxed. It was quite early when the transplant coordinator came in so my family weren't with me and they explained that there might be a set of lungs for me providing all the tests came back ok. I remember being so chilled out about it, it's so difficult to explain but I felt like I was in this little bubble of safety and protection. I phoned my brother to tell him and he told me not that long ago that he was surprised at how calm I sounded! It's quite funny because I found these notes I'd written on my phone that day just last week, I'm not sure if I was trying to send a text or what.

'Duets' means to say 'first' I think!

I also wrote this, which is before I found out about the two units only of alcohol a day rule post transplant haha! I went so long without drinking any because it made me so out of breath and I didn't miss it so looks like I'll be sticking to mocktails after all ;-)

I think this means to say to tell my cousin I don't need mocktails now I will be able to breathe!

I can't remember the exact time but it was some time early afternoon, maybe lunch time, when they got the go ahead and I was taken off to theatre. I remember it so clearly being wheeled off to the anaesthetic room and everyone was just really nice. I wasn't scared, which is unusual because when I've had surgery in the past I've been shaking like a leaf, even if it was just something minor like my sinus op! I still just felt really safe and protected, maybe I was just a bit out of it or drugged up haha or was so ill I just felt like it was my time and this was something that I needed so I just didn't feel frightened. Or maybe it was something else that I don't think I'm quite ready to talk about on here, maybe I never will, but I think you can probably gather how emotional it makes me feel. Sorry to go a bit soppy on you there, I feel like you understand though! The op was a long one at about 13 hours, I believe my surgeon had to scrape part of my lungs out as they were so sticky with CF nastiness! 

My time in ICU is all a bit of a blur, I was there for just over a month and it wasn't the easiest time so again I think my brain has blocked a lot of it out. The nurses kept a diary for me about my time there so when I get that back I'll know exactly what happened so maybe I'll tell you then about it all but until then I'll try my best to explain.  

I think I was under sedation for nearly a week, I know they didn't close my chest up for a couple of days as there was bleeding so they wanted to be sure it had stopped or something. I think I was given blood during the op too, so not only did an organ donor save my life but a blood donor too - how amazing? It was all ok so they took me back to theatre and closed me up then I think I was woken up a couple of  days after. I was so out of it still but I had a tracheostomy (trachy) in to help me breathe, a lot of people expect someone to be able to breathe normally straight away after a lung transplant but most need some help with oxygen in the beginning. This one meant I couldn't talk so I remember trying to mouth things to people which was really difficult! I wasn't in pain as they were so on it with pain relief but I did feel quite uncomfortable as I had a clot in my neck which made my right arm feel really heavy. Oh, and I had ballooned. You're not allowed to laugh, ok?

6 days post op

Alrite, you can laugh a bit ;-) I know I crack up when I look at this pic! I don't even look like me! It was all fluid and it was so flipping gross, my skin was literally oozing - especially where they'd put needles in for blood tests and things. I felt like some creature from a swamp haha!They weighed me and I was about 75kg, to put that into perspective I was maybe just under 50kg beforehand. That's a whole lot of fluid I'd gained, so not the nicest time I have to admit! My whole time in ICU wasn't that great to be honest, the nurses and doctors and my family were amazing but I was a mess. I had a bit of delirium in ICU which is common, as well as a lot of anxiety.

I can't remember what was real and what I hallucinated or dreamt, so when I try to think things over it gets so confusing and I feel myself panicking a little bit. For example a few times I thought I'd escaped Harefield (God knows how) and was so worried about how I'd get back. Because everyone around me were wearing those blue gowns in my head they were part of a cult and I thought I wasn't in hospital any more because the cult had taken me on a train to India! So I thought I had no medicines and was going to die, I was so afraid. I also had a big photo wall with pictures of my friends and family and lots of baby Florrie and they were all 'talking' to me like the photos in Harry Potter which was really weird. I remember telling my mum and stepdad to eff off, THE SHAME. Luckily they knew I'd gone a bit nuts in ICU so didn't take too much offence haha but I still feel awful about it. I also accused my nurse of  being fake and demanded to see her qualifications, I can't believe I did that! I said the same about my physio too, I feel so embarrassed. I did say sorry to them when I was more with it but they knew it was all the drugs and the ICU madness that made me stupid like that! Apparently it's very common and normal to have hallucinations and anxiety in ICU. 

I remember the doctors coming in to do bronchoscopies which is when they put a camera down your throat and also suction out any nastiness. I got to actually see my new lungs which was very cool, I even saw the stitches where they'd been stitched in! I had lots of x-rays, ct scans and just constant tests and monitoring, plus loads of medication. I couldn't swallow anything because of the trachy, not even water, so all my meds were put down my feeding tube in my stomach. Physio was something I found so difficult, because I was so heavy I had real difficulty moving plus I was so weak anyway from EMCO, being still for so long and just from being so unwell beforehand. It is crazy how quickly your brain forgets how to use muscles, my muscles had just wasted basically and I was so skinny once the fluid went - I lost something like 30kg which is madness. In the beginning I could literally barely move a finger! I needed so much help to do every little thing, it was quite scary not being able to move plus I still couldn't speak because of the trachy. But the fluid did soon go down and I started getting a bit of movement back, starting with being able to use my phone (naturally.)

I don't know what I was afraid of but I used to have mini panic attacks just before my physio session in the afternoons. I think we started off small trying to get my hands and feet moving then once the fluid had come down a bit they helped me sit on the edge of the bed for the first few sessions. Then we tried a machine called the 'Arjo' to help me stand up and I was so afraid of it haha!  I did not look as happy as this man. I'm not sure when exactly I started using a zimmer frame to walk a little around the room (when I get my diary back I'll know more!) but I was definitely feeling stronger despite still being very weak, having lots of lines in and needing oxygen still. There were tiny baby steps each day but they felt like a massive victory. My trachy got changed to one with a speaking valve so I finally could speak, eat and drink, then even better still they took it out completely! I was on the up! (Again these aren't my most beautiful photos, I looked rough as hell in hospital but I had more important things to concentrate on haha!)

Speaking valve in!

My first ice lolly haha it was like heaven!

Buh-bye trachy! This was outside when I was having 'Sunshine Therapy'. LOVE how they call it that. This is when you go out for a bit of fresh air, I managed to get out a few times! 

And then we had 'the blip', the same night that last photo was taken in fact. More on that in my next post!

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