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.
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
