A Mothers Last Message: March 2016

As a person living with Cystic Fibrosis you get told things from a young age about things that might happen later in life.

When we (myself and my brother) was old enough to know we was told by our dr that at some point in our life we would need a double lung transplant. I was only young and I said straight away that I would never have one. And till this day, I'm 25 and I still say I would never have one.

Some may ask why? Well for starters you have to be assessed to go on the waiting list. A list where I have seen other wait on and die waiting. Then there's once your on the list you are living your life waiting for that one call that can change your life, the call to say we have some lungs that could be for you. The call that cod demolish all your hope because when you get to the hospital and get prepped there's a high chance your then told sorry the lungs weren't good enough to reuse.

Then there's the point that you could be waiting days, weeks months even years and still no call, no lungs, and your survival rate is rapidly dropping. What about the fact that someone else's son, daughter, mum , aunt etc has died and your taking their lungs. Someone else's body in your body. Then there's the fact that it might not work and you die in the operating theatre. So that moment you go down you say goodbye to your loved ones and it could really be goodbye. Then if it's sussecful you spend weeks and months in hospital tied to machine upon machine finding the strength in your worn out body to fight every second of the day to get home. You have very little visitors, you find out which friends and family really care and which are only up there to see a patient who has had a transplant as though it's so cool and they must see so they can tell all their friends and act like they give a damn!

Once you leave the hospital your up and down, back and forth every week till they say monthly etc. You take more tablets, and if you forget a tablet your liable to rejecting your new lungs. Your strength is nothing, you learn to start from the beginning almost like a newborn. The even more open to catching bugs and every illness going, even that little sniffle could cost you your life immediately.

And still after every fighting day, week, month even years there's still the risk your body will reject, that risk stays with you every day of your life for the rest of your life.

Now people might say I'm selfish because I don't want one. And yes I do want to watch Lauren grow up, get married, have babies etc. But I don't want to live my life waiting for the call, I want to live my life enjoying my time with my daughter, I don't want to have to say goodbye to her going down for the op and upsetting her, to then luckily come back round from the op and if something goes wrong have to say goodbye again. I don't want another persons body part in my body, it is my body and my body parts. I could end up with anyone's lungs, the person could have been a thief a rapist, anything! Why would you want their parts in your body.

In any way I look at it all, if I die my little girl will know exactly who I am, exactly what her mother was like. And she will know that no matter how unwell I was I still spent my time with her, she will know how much I love her.

Like every CFer I fight daily anyway but as a mum my fight is bigger. I do my medicine just to stay by my daughters side aslong as I can. I want to spend every waking moment with my little girl because life can be taken so suddenly. I can't control the future but I can try to better my health. I wouldn't want my little girl up and down the hospital to see my attached to all kinds of machines keeping me alive and asking every day when's mummy coming home. Waiting for mummy to pick her up when I can't for months due to no strength and pain.

I believe everything happens for a reason. And there was a reason I had Lauren and there's a reason as to why I've always said no to a transplant.

14th Photoshoot

Biggin Hill

Picnic & Play at Heathside

14th Photoshoot

Transplants..

Elisia's Birthday at the Hop Farm