It's been almost a month of officially being on the double lung transplant list. Although  it feels like an eternity and that time is passing slower then ever, I continue to consciously remind myself that every day in passing is another day closer to being able to breathe. Until then, i'll miss doing all the things a normal 20 year old woman does. While all my friends are partying, working, attending university and achieving their goals and dreams - I'm sitting at home on a constant, counting my  tablets for the week and learning about new medications I've recently been put on, doing nebulisers, listening to my oxygen pumping whilst it keeps me alive... and the only thing I'm attending is doctors appointments.

I do my makeup to pass the time - as if I'm going out for the night -  and as a beauty therapist and makeup artist, it's one of my biggest passions and although i can't work anymore, I still continue to try and evolve in the industry and keep up with the modernisation of changes - and to be honest, it makes me feel good and it helps me hide whats truly beneath it all. It's 12.14am and my eyes feel like they want to sleep, yet my body is aching from my head to my ankles and honestly, I just don't want to sleep at all. With every cough my body jerks forward, in an attempt to help my muscle pain. My chest almost constantly feels like its being stabbed with multiple needs. My back is stiff and my shoulders are tense. My sinuses are blocked and my nose is dry from the constant oxygen. Drinking takes my breath away, and getting dressed makes me feel like I've just finished training for the olympics. I roll my neck in attempt to un-stiffen it and look down at my arms and how tiny they are from the constant loss of weight due to lack of appetite and my bodies deterioration. It seems that makeup is my perfect disguise

Ive always believed that you are only as strong as you allow yourself to be. So never be discouraged, never lose determination and focus on what lies ahead. I won't come all this way to leave without the victory.  

Today I find myself much like a hermit crab, 

short of breath and not wanting to leave my shell. 

I lay in bed and trace my eyes along my clear oxygen tubing that's keeping me alive. 

I breathe deeply and remember this is only temporary - well, I pray it is. 

Even the bravest have the greatest of fears but it doesn't stop them from 

moving in the direction they were destined to walk upon. 

Listening to Ben Howard's 'promise', It makes me feel serenity and relaxed,

It's times like this that you realise the most beautiful, simple things in life. 
Click here to listen to Ben Howard - Promise.

On another note, meet the newest edition to the family.

Hope.

We've had her for approximately 5 weeks and she is in total 12 weeks old.
I was wanting a dog for ages because sometimes we just need someone or something to be there for us in life's obstacles and ebbs- not to fix anything or do anything in particular, just be simply be there and that's exactly what she does for me. Happy days with my 900 gram beautiful little girl.

My disease progresses, advances, kills but the will to live will always outweigh the ability to die.For when there is darkness, look for the stars, when there is rain, search for the rainbow.

This road to transplant tests me everyday. It causes me to feel not only physical pain but emotional pain. To feel failure, to feel sadness. To feel weakness, and to feel different. This past week I have been struggling the most. I was told by my transplant team recently about all the chest drains, the catheters, the central lines I'll have right after my transplant. About the induced coma I'll be put in from 2-3 days. The life support. The medication. Although I had already heard about most of these things, hearing it from my transplant doctor just made it all so real and I guess, official. 

To tell you the truth, I don't want to do this. Not one bit. But you know what else I don't want to do? Die. So which option do I take? I've got nothing to lose so I figured I may as well take the plunge. 

I don't consider myself strong. Everybody tells me I am but I kind of think they just do that just to help me through a bad day. I know other people who have been or are going through the same journey and their strength is double mine. My doctors say it's normal to feel the way I do. The guilt, the hurt. Feeling like a burden. I'm not convinced though. As of the 4th of July, I will be on the active transplant list. A year ago I would of never thought this is who I'd be in a years time but everybody goes through something that changes them in a way that they could never go back to the person they once were. 

Mind of a killer

You're born with me. I am cruel. I will eat this body excruciatingly painfully. I will make it suffer beyond imagination. I will attack the vital organs and damage them permanently.  It's my mission to kill this body - slowly and painfully. In the cruelest way. I will slowly eat away at the lungs until they are so damaged that they can't function. My plan of attack is to fill every hole in the lungs with thick, sticky mucus until they are so blocked that air cannot fill them. I will block the sinuses with my mucus and cause major inflammation. The owner of this body can either go through pain to fight me or suffocate and die from me. My mucus isn't like any other - not like a cold or flu. It's sticky, thick, green and full of bacteria that you will struggle to kill. If I'm lucky enough, you'll bring my mucus up with blood - this is a sign of my accomplishment of shredding the lungs apart bit by bit. I'll also attack the pancreas. I hate seeing this body healthy. The owner of this body will try to over rule me with hundreds of tablets. This body struggles to gain weight and it won't possess the vitamins it needs. I will kill this frail body, but before it dies, I will torture it everyday.

I will trick this body into believing that it can start a family - have children but secretly, I have already taken that privilege away. Shattering hopes and dreams is my fortè. This body may go through IVF against my own will, but only on the rare occasion will it succeed. I won't be able to attack the new little body but I'll make sure I leave my footprints there in hope if another one of my kind meeting those footprints and starting this cycle over again.

In summer, I will dehydrate this body at extreme speeds. Speeds that nobody without me could understand. I will push white salt crystals put of the skin, causing irritation. By dehydrating this body, I am succeeding in weakening the organs, the lungs are drying and this body is dying. If I really wanted to, I could dehydrate this body and kill it instantly.

This body hasn't given up the fight. It goes to a hospital every 3 months for weeks on end. If I work overtime - sometimes even more. The skin cries in pain from all the needles and the body is tested while having so many strong antibiotics. The antibiotics are used to attack me and eventually, for a short while, it feels better. Stronger. But it's only my opportunity to attack this body harder then ever before. As the body gets older, my army grows stronger, allowing me to cause more pain. Sometimes, I am able to damage this body so much that it needs 24 hour oxygen replacement. Eventually, even walking will become a chore and exercise will only kill the body quicker. I have made the muscles so weak, and destroyed the minds of many.

I have let this body survive, given them pity to some point. They are now bed ridden, on oxygen and their mind is almost lost. They are surviving on morphine and other opioids just to get through the day. They are in levels of pain that no simple mind could understand. That is my eventual pity.. If I'm feeling generous.

You die with me.
I am Cystic Fibrosis.

It was Monday the 26th of May. The day I had been waiting for was here.. Already! This was my fate and the day I would find out whether I was going to live or die. I needed that second chance at life. I needed new lungs.. Finally I was called into the doctors room, he took down my history from birth and then asked about my current situation.. without even trying not to - my eyes filled with tears and I couldn't help but pour my heart out to this doctor who I'd never met before, yet felt so comfortable in his presence.

"I can't walk far, I need help showering, I used to be a huge socialite and now this whole situation is affecting my friendships because I hardly can leave the house! It's  taking a toll on my family, I'm emotionally wrecked. I have no independence and I've been stripped of my adulthood life which should be just starting!" He had no problem hearing my cry for help.. And that is exactly what it was. Life was almost always a struggle. Walking had become a chore and I was almost relying on painkillers to get me through the day. I missed being able to laugh without coughing and going to the places I loved most. 

The doctor bought my family in, explained the pros and cons of bilateral lung transplant and told me that frankly, I could die whilst wattling for my new lungs. After our questions were answered he bought until the room one of the head transplant consultants. After a brief chat with her, it took her no longer then 5 minutes to come to tell my family and I what my fate held. Sweaty palms, heavy hearts, My parents, partner, uncle and I held our breath and crossed our fingers.

"Let's get you on the list as soon as possible.. Within the month."

My world was bright again. My future filled with hope and my shoulders lighter. Thank you didn't seem like enough and all our tears were heartfelt. And there it was... My shiny pink new lungs are in the making. ❤️

Uncertainty.. Something I'm struggling with. How can you ask for reassurance about something that isn't garaunteed? It's like asking for your death date. 

My St. Vincent's/Transplant team appointment approaches closer and closer and the closer it comes, the more scared I am. Is this what I want? Is this the right decision? On paper, yes. I'm looking right down the barrel of being an almost perfect candidate for bilateral lung transplant but that doesn't mean when I wake up, life's going to be roses and butterflies. It could though. 

As another hospital admission fast approaches, I'm not sure if it's right to wonder whether I should just let my body take it's own toll and go when originally planned, or whether I should take the gamble of a second chance and possibly live a long prosperous life... Or maybe struggle even harder? The thing is, I still have so much to do, so much to see, so many aspirations, goals...

I've never met anyone on the other side of transplant who regrets their decision, including the ones who currently and still struggle and fight. Even the ones who lost their life, always reminded me that it was the best decision they had made in their life. 

If I could have one wish, it would be to sit down and talk with God just so I could know his plan for me. Just because my decision is pretty much made, doesn't mean it's the right one. I just want to see the light at the end of the tunnel. 

            You're never gonna survive 

            unless you get a little crazy. 

Early morning thought.

PIt's 5.20am, day 14 on admission and I sit here in my hospital bed unable to sleep, a constant re-accurance. And as we all do, I think about everything that has happened lately. My mind constantly ticks over - maybe this is why I can't sleep. 

I haven't blogged for awhile and for those that follow me, I apologise, but here we go again - and this time I don't plan to stop. 

Sometimes, I sense like my health is inconvenience for not only me but others around me, family, friends, whatever it may be. I hate thinking that sometimes even when I'm at my sickest, I should stay out of hospital because it will just be easier for all of us involved, especially the ones that invest their time in travelling to see me. I always want to have a 'normal'? life.. Attending parties, get togethers, catchups.. But now it's got to the point where I'm hardly ever invited because people just assume because I've been sick these past 3 months {example} that I'm still sick and can't attend anything at all. Yes it has been more often then not, but I still want to attend them and never miss them. 

By now, I'm 20 years old. I have been 'doing' hospital admissions all my life. So some say I should be 'used to it.' Should I? Is that's why now, the calls have stopped, the flowers don't get ordered, the cards don't get posted and I shouldn't even think about visits? Or maybe it's just because everyone else is used to it except me. That the most regular visitors I have are doctors and nurses and the very few and far between family and friends. Is that why a text with the common 'Love you, hope you're feeling better soon' is sent? 

Maybe. 

What nobody seems to understand is that sitting in a hospital 24-7 for 14 days or longer, staring at 4 walls is the loneliest you could ever be. 

Everyone n your life has a different role, I guess. Whether it's to be by your side 24/7 or to be a distant friend or family member rarely spoken to and I guess that's why I shouldn't hold grudges if someone I expect to contact me whilst in hospital doesn't - because maybe they're toxic to our lives and that's Gods way of just telling you it's okay to not have them around.

                                  

To you it may be just a dog but to me, she's my best friend. 

My happy place, my light of my life. The one I can cry to and tell my secrets to, knowing she won't tell anyone. The one I know who will be happily waiting for me with unconditional love when I get home. To me, she's the piece of my heart I never thought I'd need to face losing but the time has come where I just don't know how much longer I have with her. 

I love you hub, near or far.
"The person who said diamonds are a girls best friend never owned a dog."

Rest in peace Sarah - 10th February 2000 til 24th December 2013.

My wish

I hope the days come easy and the moments pass slow

And each road leads you where you want to go

And if you're faced with a choice and you have to choose,

I hope you choose the one that means most to you. 

If one door opens to another door closed,

Keep on walking till you find the window. 

If its cold outside show the warmth of your smile. 

But more then anything, 

My wish is that this life becomes all that you want it too.

Your dreams stay big and your worries stay small. 

You never need to carry more then you can hold. 

And while you're out there getting where you're getting to,

I hope you know that someone loves you and wants the same things too. 

This is my wish for you. 

I love you mum & dad.