Self discovery, Emotions, Hospital addmission and National Transplant week.

Hey Bloggers,

This post is going to be my most deepest and emotional post yet. I am sorry I haven't posted in a while, feels like I've neglected this a little bit but my health, college and social life has taken over! I've been on a very long and complicated journey over the last few months, health wise and emotional wise. I am going to start off by talking a little bit about my expression of emotions and letting people in, which I am sure that lots of people with my complicated health condition will understand.

I have always kept myself to myself emotion wise because it has always seemed the easier option because I don't like feeling vulnerable to being hurt by peoples cruel comments about my scar, why I can't breathe as well as other people, why I take a while to talk to people when I'm sick so I can catch my breath. It's always been easier because I have never had to answer to anyone, let them see me in pain. I've hidden the true extent of my pain from my friends and family because I just get on with it, I just suck it up and deal with it because I don't like others seeing me suffer, I don't like letting people see me vulnerable. Only recently this has become a struggle to carry on thinking with this state of mind, I realise that if I want to be happy I have to start letting people in. I have the emotions there, I just don't know how to express them in ways that I want too. So over the last few days I have been trying to express my emotions towards people in my family, this is easier than I expected it to be and has given me great satisfaction. Showing these emotions to family is somewhat easier than friends and potential relationships because I've always been known as the tough girl, the girl who gets on with it, but I know this needs to change because it will affect me and affect them in the future. I'm sure others with CF feel like this, I know I'm not the only one.

The next thing I want to talk about is my admission into hospital on Monday. It's not for my chest, but for my stomach. They are finally doing my stomach operation and I am so pleased! no more pain and discomfort when eating and when drinking. I am quite nervous about this procedure because I know its major surgery and I have an irrational fear of ventilators as I have had a few bad experiences on them, but I'll get through it. Always do.

My final topic is national transplant week, this is a close cause to my heart. We need more donors to sign on the list but also for people to tell their families their wishes because even though they are on the list, the family can still refuse to donate the organs. Telling people their wishes is vital for the organ donation cycle to carry on. Four years ago next march someone saved my life, they've given me a lease of life, a second chance. You don't know how poorly you are until you feel better, the waiting and the agonising thoughts about whether you are going to live or die is horrible, torturing in fact. I am one of the lucky ones who got their organs but so many people die on the list, lives that could of indeed been saved. Wales has an op-out system, I think this needs to come into force in this country because it will save so many more lives, but until then, please sign the register, become a life saver. Don't waste your organs when someone in this country is crying out for them.

Thanks for reading everyone :)

Gracie xx 

seems like forever since I updated

Hey guys,

Sorry for the long period since I updated, been so busy with Christmas and everything. Now I'm back at college too! which hasn't helped me keep up to date with my blog. Anyway things are plodding along with me basically, I am having surgery on my stomach in April in the Easter holidays, I am a bit nervous about that really because I can see it affecting my kidneys even more than they are already. Well that's my stomach side of things, I am due in hospital next week because my little lungs have decided to say to everyone that they are still here and want some attention because the rest of my body seems to be doing that! This will be my second admission to the adult ward at my hospital which is quite good considering I moved to adults two years ago. I haven't been admitted for IVs for 14 months!! I'm really pleased about that. This cough is getting the better of me though, I've been sick since boxing day and it has slowly just got worse, orals didn't even touch the sides. I'm not looking forward to staying on the adult ward because last time it really played on my mind for months afterwards because I am hardly ever ill with my chest. Hopefully I can come home on home IVs after a few days because they have to monitor my kidney and liver functions.

Enough about that, this is a personal note. I have met some truly amazing people in the last few months and some of them have become my closest friends, I am so thankful for all the support I get off my friends, without them I would literally crumble. I'd like to say thank you to the most amazing person in my life right now, he's called Chris. He picked me up when I was at my lowest and he's helped me through so much. I love him for that and I cant thank him enough, also I'd like to thank Charlotte, she's been amazing too! we have known each other since we were small but never really been as close as we are now. I'd also like to thank Danielle, Wesley, Martin, Sarah, Taylor, Nicki, kit Kat and everyone else who's supported me over the last few months :)


thanks for reading everyone xxx

Grace xx

A bit of a catch up

Hey guys, 

Sorry I haven't written in a while, I've had so much going on and so much to update you with! 

So I'll start with my kidneys, I went into hospital 6 weeks ago due to my kidney function dropping. I was meant to stay in two nights just to flush them through but I ended up staying in two weeks because I had a horrific headache and had a fit and had to be ventilated and put on the kidney dialisys machine. My kidney function has stabilised for now but hey! You never know with me! Aha. 

Next update is on surgery, well I have to have surgery to untwist my stomach because it's twisted on its side and attached to liver. So that's being sorted and they are going to sort out my reflux and the same time! I have to go back in December to decide when surgery is best because of my kidneys. 

Next update is about uni and college, well I still want to be a nurse and have been looking at different uni's. I really want to go to kings college! College are helping me do my ucas and personal statement. So excited i just want to go now and get away from here! 

The last update is about me, I've shaped into a really good person now, my lungs are healthy and I'm quite fit. So I've even able to go out to places and chill with my mates. I'm going to a Halloween thing at my local nightclub tomorrow are a sexy school girl zombie! I've been making my outfit today and I am covered in paint hehe. I really have the best friends in the world who understand me and what I go through. 

Thanks to everyone for you constant support. 

Grace xx 

Going to Kings to talk about being a young mentor.

Hey guys,

So today I am off to Kings to talk about what is going to happen on a young peoples liver disease meeting. Last year I attended this as a participant but this year I am going to be a young mentor because I am nearly 19 and have been through transplant. The day is basically going to be about how liver disease affects young peoples lives and different ways of coping with it, also talking about possible transplantation in the future. I think its great that they have chosen me as a young mentor because I feel like I am giving something back to my donor for giving me the gift of a second chance at life. I am so grateful to still be here and to be able to say that I can now help young people going through the same thing. People need to be more aware of what the power of organ donation can do and I am glad that I can help just that tiny bit :)

Thanks for reading

Grace xx

Update on surgery

Hey blog readers,

So you know I told you I needed a pacemaker for my stomach because it doesn't empty properly? Well. They diagnosed that completely wrong! I went to the hospital a few weeks ago and had a bearium meal. The results showed that I have something called gastric volvulus. It's basically where your stomach has twisted 180 degrees on its side. The symptoms are, a swollen stomach, terrible stomach pain and vomiting....well I have been showing these signs for more than a year and no one has paid any attention to me. So I went for another appointment to discuss surgery. My transplant team are involved now because they no me and no what they done inside me. It's major surgery and I will probably be in hospital five weeks. It's thrown off my college course but if they do it now I should be able to catch up. I'm just really annoyed to be honest. Not at surgery but at my doctor for not picking it up sooner. It can be very dangerous and you can die from it if it's not treated and depending how bad the volvulus is.

Thanks for reading, 

Grace xx

Cf will have to put up a good fight first.

Hey guys, 

So I've been pretty down for quite a while now and I'm really fed up of it, so I thought I needed to snap out of it before it really starts to get me down. I've realised that it wasn't the cf that was making me down, it was my mental attitude. So, it stops now! I have to try and carry on, not just for me but for all the people who have died and didn't need too. I have to be strong and pick myself up because I have so much more fight in me left. I will be wife, mum and grand mum one day, and I have to believe it.

Thanks for reading x 

No sign of getting much better.

Hey guys, 

Well I still haven't heard from the hospital when I'm going to be having my surgery. I know I'm going to have it, I just haven't got a date yet. I'm really down at the moment because of so many things, mainly to do with my stomach but also because another CFer has died. It's so hard and it doesn't get any easier. It just dawns on you more. I hope that he is a peace now and that he didn't die in pain. Things with my lungs are okay at the moment. Going away did them a lot of good! I hate being in such a depressing mood because normally I'm a very positive person but lately I've been really struggling to find the inner strength and to pick myself up of the floor. I just wanna say how much I appreciate my friends always being there for me and also a few CFers that I'm quite close with. Including Martin and Vicki. The most loveliest CFers I've ever spoken too. I hope my mood can change soon because I'm fed up of feeling crap. 

Thanks for reading, 

Grace xx