Lung Transplant

Hi everyone, so on Tuesday as most of you have probably seen, I was in the paper. Front page and in the middle if you're wondering!

The Rainbow Trust kindly asked me if I would mind doing an interview with the Swindon Advertiser because even though I'm poorly I'm very lucky to have my own voice. I said yes and last week I met Marion and she was so lovely. I was really nervous to do the interview because I'd never done one before and I wasn't sure what to expect. But Marion was amazing and made me feel right at home and relaxed, we managed to have a laugh and it was really nice to get to know her and to do something different. 

Since it got published on Tuesday my phone has not stopped going off. I cannot believe how many people have actually seen it! I never ever ever thought that in a million years people my age and people I know would read it which is one of the reasons I was so happy to do it. It sounds bizarre I know but I just didn't think people would read it. I don't really talk about my illness often in the way I did for the article, it was a lot more personal than I think any of my blog posts have ever been. I don't know if this makes sense as a reader but to me it does so I'll just hope you understand what I mean. I think it's also a lot to do in the way they right things as well, I guess very blunt and straight to the point? I don't know, anyway; I really cannot believe how many people have read it. I've had so many messages from people that don't even know me and I'm so humbled by you all. You've all been so kind and some of your words really did make me well up. I also didn't think my friends would read it either and I was kind of hoping they wouldn't, but they did, and they were all so keen to show their support for me which was amazing. 

I also noticed that since it was published and people have read it, there have been many of questions regarding a transplant. I really can't remember if I've spoken about transplant before in a post or I would attach a link, but I don't think I have so I guess it's time to speak about that...

Back in June 2013 when I was under Great Ormond Street at the age of 13, I was told that I needed to start considering having a lung transplant and a transplant assessment was arranged for me. It consisted of 3 days in London, having tests after tests after tests and then a consultation with the lung transplant specialist, Helen Spencer. When we met with Helen she told me and my family about the operation, what it would consist of, what it meant after, and lots of other things I shan't bore you with.   That day was one of the most emotional days I think I've ever had in my entire life and we were bombarded with information and facts and figures, and to be honest to put it bluntly transplant is not as amazing as it is made out to be. You have to be 100% sure, and you have to 100% dedicated. Not that I'm not dedicated, I'm just not 100% sure, I'm actually 0% sure. And it's really not as easy as you would assume it to be. Nothing like Casualty or Holby City I'll tell you that now!!

When I had my transplant assessment I took notes on my phone so that I could look back on it at a later date and I had all the facts that essentially mattered the most to me at the time.

• 6-7 Hour operation
• Takes 18months to fully recover from
• After the operation, you have chest drains to drain the excess fluid as well as on constant morphine for pain relief
• You have to make yourself cough as when they do the lung transplant they cut the nerves off from your lungs to your brain so your lungs don't tell you when you need to cough and this also helps to stretch the new lungs
• Chest pyshiotherapy after
• In hospital for minimum of a week
• 3 months off school/work due to risk of infection
• 12 different tablets to take a day
• The scar is under the boobs on the bra line going across
• After the transplant its an average of 7 years life, but it could be less or it could be more
• If my stomach gets damaged during the operation, I have to have another operation the next day to have my stomach tightened 
• More at risk of cancer or other organs failing
• 95% chance I get through surgery, 75% chance I'm still alive after 5 years, 50% chance I'm alive after 7 years and only 1/3 of transplant patients survive after 10 years

I think one of the biggest things for me is that I could potentially be playing with my life; because it's a lot to do with timing. For example, if I decided tomorrow that I wanted to go on the list, I would most likely be put on the list straight away, but at the moment I'm rather well in the grand scheme of things. So if in the near future I go on the list (NOT THAT I AM), and suddenly theres a perfect match of lungs available for me in December for example, I have to take them as soon as they are available to me. I can't just decide then that I don't want it or it's not the right time. So if in December I'm still as well as I am now and theres a match for lungs, it could mean that I have my lung transplant too early. And that instead of gaining months/years, I lose months/years. Because if I'm 'well' and I have the transplant but then reject them, I've essentially lost time, because I've had it too early and I could of had another 6 months before I was really poorly and needed the transplant because time was running out. But there's also the case of going to late and being too poorly to pass for transplant.

There is obviously a lot lot lot more to transplant than the few things I've stated and that is just the start. I guess some people would see it as a really high success rate of survival but it's my life I'm messing with and if I get it wrong it could potentially have serious consequences for me. I believe a lot of it has to do with timing and I definitely know it's not my time to consider transplant again yet, it may never be my time but it could be sooner than I think also.

It's a very tough decision to have to make and there are so many things that you don't realise happen unless you're in the position. Talking about transplant is particularly hard for me, and I'm really not that accepting of the idea. I don't want a transplant and I hate discussing it if I'm honest. There are so many reasons why I declined transplant, but maybe in the future I might change my mind, I really don't know but for now it's a no. 

I hope this has cleared a few things up! And if you haven't seen it already I'll attach the online version of the newspaper article below!

Thanks for reading and for all your continued support

Love, Erika

Online Version - They said she would not last a year... now she's 18

What do people find at the bottom of the Rainbow if they are very lucky?

As some of you may know on the 1st of July me and my family hosted a Quiz night in aid of the Rainbow Trust. We'd never ever done anything like this before but surprisingly it went really well for our first!

The night was absolutely amazing, we were given tons of raffle prizes and we never expected to get that many at all, so thank you to all the companies and families and friends that gave us a raffle prize! We also played Irish Bingo at the end, as well as a 'Name the Bear'! We were very lucky to have my grandparents as quiz masters and we were very lucky with the turn out. It was absolutely incredible, the support we received was amazing; and I can't thank everyone enough that came for making it one brilliant night! Our whole family was touched by everyone that came and supported us and helped raise money for the Rainbow Trust.



We raised an astounding amount of money, £848.72 to be exact and we handed it over to the Rainbow Trust 2 weeks ago!

Thank you to everyone who came and made it an amazing night!

Love, Erika

The Build

Hi everyone, long time no speak! I hope you are all well. Life is a little bit crazy at the moment which is why there has been some serious lacking of posts but hopefully I can start to pick it back up again over the next few weeks!

I'm currently having an extension built on my house, oh em gee! It started on the 20th of June, and it's going to be an extension on the downstairs to extend the kitchen diner, as well as building a downstairs bedroom and bathroom for me because those stairs are starting to get the better of me now. We're currently boxing up our kitchen, dining room and living room and I'm preparing to leave to go to my Dad's tomorrow for about 3 weeks while they do the knock through and complete the build.

It's not been as stressful as I though it would be, and we're very lucky with our builders. They're all so lovely and we get on really well. Don't ask why but I really enjoy making them cups of tea haha, maybe it's therapeutic I don't know but never the less I enjoy it. We're always having a laugh and when it comes to the end of the day I don't actually want them to go home, and now I'm packing up for my Dad's I won't see them anymore which I'm a bit gutted about!

Apart from the build, not much has really happened! We hosted a quiz night last night in the aid of the Rainbow Trust which went really well and I had such an amazing night; so keep an eye out for a post on last night which will be coming later this week.

And then for the next few weeks I've got quite a few things going on which is exciting.

This week my Grandma and Grandad are finally moving down from Brighton and we get the keys on Monday, so most of this week will be helping them out with decor and moving in. But I'm also off to Bristol this week with some friends from work for a good old shopping spree, then at the weekend I'm going to a wildlife park as well as the usual which is meeting up with friends for a coffee and catch up; definitely one of my favourite things to do!

So a really full week coming but I can't wait! It also means that time will fly by because I can't wait for my birthday which is in 28 days!!!!!!!!!!!!! Flipping heck, it only feels like yesterday I was saying that it was 160 days! Oh how exciting.

Speak soon

Love, Erika

But you don't look sick?

"Have you ever seen someone park in a disabled spot and look perfectly healthy as they step out of the car? You wonder, "They're not disabled, they can walk just fine! They must have that disabled badge illegally." What most don't stop to think is that perhaps this individual may have an invisible disease. A disease that causes a brief walk across the parking lot to feel like the equivalent of running the length of a football field five times over while every single joint screams in pain."

I'm very aware of the fact I don't look poorly and I look rather normal for someone who has such a life threatening disease. But I can assure you that if you could see my insides, they would tell a very different story.

Anyone that knows me well will know I'm very stubborn and I refuse to give up. Work is hard, much harder than it should be and it's getting harder; but I won't give in. It may take me more time, and I made need to take five minutes but I will not give up. When I see my friends, you may see me laughing, talking and walking. But what you don't see is me asking them to slow down, or me telling them that I'll talk in a minute because I can't walk and talk. You don't see me stopping to catch my breath and gathering myself because I feel 'funny' (faint/light headed), to you, I'm looking in a shop or checking my phone.

People assume that I can breathe better because I'm out and about and doing things, unfortunately no I can't breathe better at all, it's worse when I'm out and about. But I refuse to sit here and not do anything; it might take me longer, I might have a funny 5 minutes, but I'll do it, no matter how hard it may be.

Sometimes I do give in and say yes to the use of a wheelchair, but only if I'm not in Swindon. I don't know why but I'm not ready to see people I know in a wheelchair out and about. Even though some days when I'm out I could really benefit with being in one, I refuse to use it. I'd rather struggle than be seen by people I know in a wheelchair.

And even though I'm in my wheelchair, I still don't look sick, and my illness isn't actually that visible. I just look like a young girl, in a wheelchair, with no obvious reason as to why I'm in a wheelchair.

I'm still learning how to not be embarrassed when asking for help and for people to slow down. And this is something else I'll have to learn to accept. I've already come so far in just a year with my wheelchair, but I think it'll be a while till I'm ready to accept it fully.

"All too often judgments are made that the patient cannot be ill, because they do not look sick".

Love, Erika

http://www.mollysfund.org/2013/04/invisible-illness-but-you-look-so-good/

One Day

If you had one day to live, how would you spend it?

Many people say they would want to live it normally, as they would any other day. But if you knew that you only had today then would you really? I know I wouldn't.

I'd make a special effort to wake up at 8/9am so I really could make the most of my day. I'd ring absolutely everyone, all my close friends and family so I could spend it with them. And I think I'd like to get the train to Weston-Super-Mare.

A lot of my childhood memories are at Weston with my family; mainly my Mums side. I have so many fond memories of donkey rides, sea world, the pier and Ben building us sand sculpture cars. It's definitely one of my 'happy places'. I spent my 17th birthday there with my family last year, and to some of you that may sound far from exciting but I honestly had the best day. They have the most amazing milkshake shop just outside the centre which we always go to, and the pier is always a good shout.

Anyway, I would definitely go to Weston-Super-Mare and I would definitely grab a milkshake and I'd also go to the pier. Ahhhh so much fun. And I think I'd just get some chips and gravy, and eat on the sea front wall with everyone.

If I had one day to live that's how I would spend it, not too complicated, but spent with the most important people in my happy place.

As for having one day left to live, that won't be anytime soon and if it ever does come around, I'd like to think I'd be at a decent age, so I probably wouldn't be able to do all that in reality. So actually if I did have one day to live, I'd like to be at home, in bed surrounded by my family and friends, and theres nothing more I'd want! (Although a a pizza definitely wouldn't go a miss. (I hope that's the right term).

I believe that you should live every day as if it's your last. You leave behind the history of yesterday, and determine how you will use todays energy; because all you have is now, and you have to live for today and make it so beautiful that it's worth remembering. Today will never come again so make good use of it. You will only regret it if you don't.

Life is beautiful; count your blessings, not your problems.

Love, Erika

More Amelia's

Source

More Amelia's

Charities, what would we do without them? In all honesty, I never really payed much attention to charities before I got poorly and that sounds absolutely awful but I think most people have this perception; that charities don't do what they say they do and actually the money doesn't go where you're told it does..I was one of those people. 

When you're chucked into a situation that you weren't expecting you feel totally alone and you really don't understand until you're in it. Charities are one of the most incredible things to ever exist. They have the ability to help people that need it and provide support as well as hope. Unfortunately a lot of charities don't get the recognition they deserve and I've only had the pleasure of working with a few charities that really do deserve a lot of recognition; Rainbow Trust, Molly Olly's Wishes, The Family Fund and Make A Wish Foundation. I've written about my experiences and wishes with all of these charities on a previous blog post Make A Wish. 

I've currently been working on a project with the Rainbow Trust to get them more recognition by creating short films with other families. My support worker Amelia is absolutely incredible and before Amelia joined, I had a lady called Oonagh. Both incredible women. Unfortunately Oonagh left and Amelia took over, and I don't take to new people very well when it comes to my illness but Amelia honestly is just amazing and we just clicked. 

The thing with Amelia for me is that she's not a friend, she's not family, she cares, but in a different way so you're not afraid to tell her how you're feeling because the connection is different. When you speak with family and friends, you're worried. You're scared because you don't want them to be sad because of what you've spoken to them about and you don't want them to get hurt or be reminded that you are ill. You live with your family every single day, you see your friends every single week, you want yourself and them to be happy and to be honest all you want is to have a nice day so you don't really want to talk about. I really don't know if I'm explaining this very well at all, and I know what I'm trying to say but I just can't put it into words so I'm just praying you all read this and understand what I mean.

Without Amelia, I'm not really sure where I'd be. It's not just the emotional support, it's about having someone that's there and you're not afraid to let them in. Thanks to Amelia, I'm able to enjoy myself more because I have her to talk to. We laugh 90% of the time, we smile a lot, and we talk often, and that's the best way to be. She can't take my disease away, but she can be there for the bad days and the good days, to make everything a little easier and a lot more enjoyable. 

A lot of what I'm saying will probably be spoken about it the videos too, from not just me, others. There are so many families that Amelia supports. And I'm so glad that I could take part in this video as well as writing this post, to help raise awareness; because without the sponsors, we have no Amelia, and without Amelia we have no support.

Below is the link to one of our short films for Rainbow. Please feel free to check it out and pass the link on.

More Amelia's

Love, Erika

What matters is today..

Some of you may be new readers and some of you may be returning readers... either way, welcome!

I'm Erika and this is my blog, C'est La Vie. I've always loved writing and this is the place where I get to write and share things as well as being able to create awareness for PH. 

I've been writing my blog since July 2014, and my very first post was My Story,which went live on the 4th of July 2014. All though that was the start of 'Tinkerbellaaaaa', I then changed my blog name to 'C'est La Vie'. 

After a year of writing on C'est La Vie I decided to take a break and my last post was on the 1st of July 2015. Shortly after that post went live I actually made my blog private which took it off the internet completely and no one could access it. At this time, I had a lot going on, and all though my blog is to share my life through writing I only really share a small percentage which mainly focus' on my disease. It would be merely impossible to share absolutely everything and I always have tried my best to share as much as I can but there are some things I wish not to share and to keep private which I'm sure you can all understand. I was unable to write a post on what was going on and why my blog was coming offline, mainly because you wouldn't be able to access my blog to read it and also because I could barely string a sentence together, nothing made sense, and I tried so hard to write a Facebook status but I just couldn't, I would just sit there, staring at a blank screen trying to figure out what to write. In the end I wrote maybe a line on Facebook saying I would be taking a break and I'd be back soon... 

Well here I am, 9 months on...I'm back and I'm ready. 

People would ask me when I was gunna come back and honestly I was never sure if I ever was going to come back; but since working on a project with the Rainbow Trust, it's given me the confidence boost that I needed and it made me realise that a lot of what I write helps others whether they are in a similar situation or not, and if I'm able to help people through writing and being honest then I'm happy.

At the moment I can't actually share the project that myself, others and Rainbow Trust have been working on but I promise I can soon, honestly I can share it much sooner than you probably think. 

Also, since taking my blog down I've deleted Facebook, I did also come off Twitter and Snapchat for a long time but recently got them back. As for Facebook, well, I'm not sure about that at the moment. It will benefit my blog but it definitely doesn't benefit me at the moment. When I feel that the time is right for me to get Facebook back I will and I'll be sure to let you know but for the moment Facebook is a big NO.

Since taking my blog offline, I've had a lot of time and it's definitely time I needed. I don't regret taking it offline because it has benefited me in so many ways. I am so grateful for everyone that was there and supported me at the beginning of Tinkerbella as well as everyone that may be reading for the first time. It truly means the world!

Thank you so much for reading

Love, Erika