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