Transplant - One Year On

Actually one year plus a bit more, but for someone who rambles a lot on here I was struggling to write this post. Also I try and keep the actual date quite vague for ethical reasons as I don't know anything about my donor or their family so it's out of respect for them. For those that are curious, as I've had a few people ask, I did send a letter a while back to the family which was really important to me as I wanted to thank them and let them know how grateful I am. I've yet to receive a reply but to be honest although it obviously would be lovely to know about them, if I never do that's ok as I could never ask them for anything more as they've given me so much already. They have given me, a total stranger, life. How bloody amazing is that? So for Organ Donation Week 2017 I really wanted to write a post celebrating that in honour of my donor and others who have given people like me a second chance of life as they're all total superheroes. You may wanna grab a cuppa and a snack too as this will be a long 'un but hey, it's Sunday! Hopefully you're doing nothing more than slobbing in your pyjamas and watching Sunday Brunch.

I'll start with the obvious - for me transplant wasn't the smoothest ride (you can read about it here) and sometimes it still isn't. I don't think it is for anyone, as it's a massive life-changing thing, particularly I think if you have cystic fibrosis (CF) or another chronic illness and have been ill all of your life. My health deteriorated as I got older but even when I was 'well' it was still a life of intense chest physio, multiple nebulisers, and a cocktail of drugs daily. IV antibiotics every three months at least, x-rays, blood tests, tube feeding from the age of three years old. At the time I just saw it as normal and I somehow fitted it around every day life with a lot of dedication, early wake up calls, understanding friends and especially a lot of help from my amazing family (everyone says their mum is the best but mine actually is, so there!) And of course my CF team, who I think I got real lucky with as they're the most dedicated (and a little bit nuts!) team of people who I consider friends. They are everything that is wonderful about the NHS and just humankind in general.

I still have CF and with that the various complications that come with it but they're easier for me to cope with now that I don't have rubbish lungs to contend with. Breathing is the most basic thing living things do and when you can't it makes every little thing difficult. Although I'm still on a lot of medication and have regular tests and hospital appointments at Harefield (a fantastic hospital with brilliant, genius staff) where I had transplant and less regular with my CF Clinic, my treatment regime these days is barely anything compared to before. I used to spend hours a day doing treatment and medication, now I'd guess it all takes half an hour tops if that. I haven't had IVs for a whole year which hasn't happened since I was diagnosed aged 2. It's so brill not needing to do chest physio, it's the most tiring and time consuming thing - I'd compare it to going to the gym at least twice a day! Obviously it's amazing having it all cut down like this but it did take some adjusting because when you've been doing something your whole life change takes some getting used to - for a long time I always had the feeling I'd forgotten something! There's had to be a lot of adjustment actually, but this is a good thing. The best of all has been having my independence, I'd say I got it back but I got ill just as others are finding their way in the world so I didn't get much of a chance to do that but now I do. It's nice not needing to rely on others as much and so fab to make plans for the weekend knowing I'll most likely be able to go instead of getting ill and cancelling like I used to 99% of the time. I feel so free!

My 23rd birthday

There are also changes on the inside and out. They did my transplant using the clamshell technique (which I will leave you to google if you're not squeamish) and where they put the bones in my chest back together it's a little bumpy and just feels different, it's a bit hard to explain. There were no mirrors in the hospital so when I got home after two months I had a good look and to be honest I was so shocked. My neck is covered in scars from having a tracheostomy put in not once but twice and they also stitched it in. There are marks there and on my shoulder from having lines put in. There are scars there from where they originally put the ECMO (which is a life support machine) in but I think my heartbeat was too strong so they had to move it to my groin, where I also have two big scars as the tubes were massive. I have four scars in my ribs from chest drains and a weird one in my stomach that looks a little gunshot wound where my feeding tube was for 20 years. Then there was the biggie, the transplant scar - this goes all the way across my chest horizontally like underarm to underarm and although the rest of my scars have faded a lot this one doesn't seem to want to no matter what I put on it. It took some getting used to as I was totally in my own crazy world in ICU and wasn't too aware of all the tubes and I have zero recollection of ECMO still so although I know where they're all from it was still a bit surprising to see all the scars as I don't remember where they came from.

But now they don't bother me, I love what I see in the mirror! Obviously I still have the odd day where I wish I had a Kim K butt (which is ridiculous as I so don't have the sass for that ass!) but on the whole I'm happy. Scars tell a story anyway!  Pre transplant I was often hooked up to all sorts - IV drips, feeding machines and 24/7 oxygen. Now I've got no bits of plastic stuck on me, no needles, no oxygen tubes or Airvo machine covering most of my face. I have my face back! A face with no dark circles, a bit of colour, even a little bit of chub. At end stage CF I was often in a wheelchair and struggled with the most simplest of tasks then when I woke up from transplant I had total muscle wastage so couldn't even wiggle my little finger. I had to learn how to do everything again, from swallowing to walking and even a couple of months after transplant I was still needing a frame and moving like a zombie from The Walking Dead. But now I'm walking, I can run, I can do what I want. Even as I'm typing now I still look at my fingers and feel grateful I can move them.

Old lungs

I've always separated CF and my body, I feel like it tried to fight against the illness all those years and when I got told I needed new lungs I grieved for my CF ones and felt sorry for them as they were just so battered. Now I think WOW,  look how it bounced back after everything it's been through over the years and I have this new respect and awe for my body that maybe I didn't have before. The way it have adjusted to these new lungs and welcomed them is incredible, as are the new lungs themselves. CF is like having a constant chest infection that gets so much worse when you have another chest infection on top of that and towards the end my lungs were ruined to the point where they literally weren't working which is why I was put on ECMO. All my life I was that kid in exams trying desperately to hold my cough in so the nerds wouldn't get angry at me, trying to hold it in at the cinema watching Atonement when Briony reveals the twist, trying to hold it in on the bus so people don't look at you in disgust because how dare you get on public transport if you're ill. It's a constant cough, you'd hear me coming before you'd see me. Now, it's just gone! I can't tell you how weird it is, weird but fantastic. Coughing all the time is exhausting, as is having lungs full of gunk permanently even on a 'well' day. Now they are so clear, I never cough up any green nastiness which is bizarre to me as I used to be able to do that on demand like some super weird party trick. I used to take shallow breaths so I had to learn how take deeper ones and to be honest it took a while to trust my new lungs. I wasn't used to breathing so easily and at first I was so used to struggling to breathe I thought I still was when I wasn't - what a dope! Also I didn't know what was 'normal' breathlessness so it took a bit of time to work out that going to the gym for example makes everyone breathless so it's nothing to worry about. Like it's still weird and mind blowing to me that I can run up and down the stairs, 90% of the time I'll take the stairs rather than the lift or escalator just because I can and it kind of baffles me that anyone who is healthy and able bodied doesn't! But obviously that's just because it's a novelty to me and so much easier in comparison to before.

My lovely and clear new lungs

Of course I'm doing much more than just running up and down stairs! This year has been the most fun learning to live properly again and it's been the best of my life. Organ donation has allowed me to have so many new opportunities and I've got experience things I never would have had I not received these new lungs. Here are some highlights!

*I've made so many more memories with my family, I'm lucky to come from quite a big gang and we're all so close. Excitingly got to meet my cousin's beautiful baby too! He's just a couple of weeks old and is the loveliest boy, his name is Hughie (or 'Queuey' as Baby Florrie calls him!)

'Queuey'

*Although Baby Florrie is now Toddler Florrie! Before transplant I said I wanted to be around to have proper conversations with her and know what was in her head. Now I do know because she can tell me all the funny things that's in her head and I love hearing her stories, whether real or imagined haha. I can play with her properly which I couldn't do before and we can dance because in Florrie's words 'Everyone has to do dancing, ok?' I agree!

Florrie wearing my sunnies way better than me!

*Which is why I've had many dancing nights with my friends, both new and old. I've made more memories with my best mates (who were there all through transplant both before, during and after - we are currently planning a trip to Disneyland!) and also many new ones that I've met since transplant and I'm so grateful to have all of these people in my life.

Me and friends and boyfriend Tom Hardy

*I've been able to volunteer at the Fashion and Textile Museum which has been an really fun opportunity not only to indulge in my love of fashion history but also helped ease me back into the 'real world' after being in my ill lil' bubble for so long.

*I'm off to uni to study Fashion and Dress History, something I'm actually passionate about and live in Brighton which is one of the most fun and creative places in the UK. I'm moving out of my home which wouldn't have been an option before.

*I've got to see new places and so many of my favourite bands and artists that I've lost count. I'd never seen them before so it's been a dream to see the music played live that got me through a lot of the bad times. In fact I'm at another gig today seeing The Libertines!

With Meg at Blink 182

*There are the little things like eating more ice cream, reading more books, seeing the latest season of Game of Thrones. Things that might not seem like much to some but mean the world to me. Taking Freddydog on long walks is a definite highlight!

Freddy and me

*I was on the blimmin' TV and radio raising awareness of organ donation. Totally out of my comfort zone, but that's where all the fun awaits innit?

On the radio

*Talking of comfort zones I think I've pushed myself way out of mine this year. From meeting new people to going for opportunities I maybe wouldn't have had the confidence to before it's been so much fun just going for stuff and has lead to many amazing things so I'm glad I stopped being so wimpy. Organ donation has given me the push to be braver and it was a push that I needed.

This is all thanks to my donor. It's a cliche but there really aren't enough words to describe how grateful I am so I hope through my actions and by making the most of this gift I can show it. I worry sometimes that I sound almost cold when talking about organ donation but please know that I think of and thank my donor daily, they are my absolute hero. So as I come to the end of this lengthy post I'd just like to ask you to consider signing the organ donor register. Since I was listed I've had so many emails, comments and messages from people who read my blog or follow me on instagram saying that they have signed the register and I can't tell you how proud that makes me! It's such a selfless decision to make and it's so amazing that you have taken the time to consider it and taken a couple of minutes out of your day to sign up as I totally understand that it may not be the easiest decision to make. As you know I back an 'opt-out' system but currently this isn't in place in England. When I got my transplant it was only because someone had signed up and that their next of kin agreed to it and that is the reason I'm here now. Who knows when or even if an opt-out system will become law here, in the meantime three people die a day waiting for an organ transplant which is a heartbreaking statistic. If people sign up now, today, this very moment, there is a chance of this number lowering and more people will be able to get their second chance of life like I was. If you do or have signed up, please remember to have that all important conversation with your family stating your wishes as currently they are able to override your decision even if you are down on the register so it's best that they have definite knowledge of exactly what you want as that way they are more likely to agree to organ donation should something happen. Again, I know it's not the easiest convo but it's an important one that could help change or save lives. 

Even I'm on the register, so what's stopping you? ;-) You can sign up here, it's so quick and easy.