How to save a life

I have always known somehow that when it comes down to it I will need a new heart one day.  After researching and helping my twin gain her organ donor card I wondered how many people really know how to do it, and want to. Do people really think while writing their will that they would like to save or enhance a total strangers life?. I guess they do, but Australia has one of the lowest organ donor rates but the highest success rates of transplants. There isn’t much right with that statement.

People who are on the list can wait up to five years, or longer, for an organ they really need right away, some won’t get on the list because they need to much that can’t be given or they are too sick to survive such an operation, you will die anyway, the doctor says, and you will hear them screaming back, we all are anyway. I never understood, until the wisest of girls told me of the fine line between being well enough not to have a transplant and being too sick to survive the transplant.  To get on the list your quality of life needs to be bad enough for your doctors to decide that this will benefit your quality of life but well enough to survive the operation and afterwards. You will then join 1600 other people waiting for organ and tissue transplants,  While Australia has one of the highest success rates for organ transplants in the developed world it has the lowest for organ donation, that is where you come in.

Anyone can donate something, whether it be heart, lungs, kidney, liver, pancreas, pancreas stets, intestine or tissue. You are never too old to donate; you do have to be 16 to legally go on the organ donor registry though. Transplant professionals will decide what organs and tissue can be used at the time of death after looking at your past medical history, the condition of your organs and their suitability. You will still be able to have a normal funeral, open casket and all and your family will be able to anonymously know how the person who received your donated organ or tissue is going and will be treated with care.

When you die two senior doctors separately check that you are legally and clinically brain dead, then they will see if you are on the organ donation registry and contact your family who will have to confirm the donation wishes of the deceased before donation for transplant can proceed. Your family will be supported by a trained donate life coordinator and counsellors during and after donation.

This is not a private decision, you can tick the box and become a organ donor on your own, yes, but your family are the ones that will make the final decision, it will need to be quick and easy at the recipiecent will need the organ as quick as possible. which is why you have to discuss your wishes with as many people as you can, because when you die you won’t have control over your wishes, your funeral, it all comes down to your family, and they need to know. That is what a will, a funeral plan, the organ donation registry and a very important  conversation is for, so when you pass they will know for sure what you want. Your life and wishes will always be top priority before donation, you won’t be compromised in your final days and the quality of care and consideration for all involved is never compromised by the potential of donation.

It seems easy enough, not many people do it, and those who do still need to talk to their families about it, explain why you want this, why it is important to you so when the time comes you can trust that they will let you help save or enhance someone’s life.

A transplant may last five years or two weeks give or take and medication is vital everyday to ensure there is no organ rejection. It may not seem worth it, everyone dies eventually. But it gives them more time with their love, Give them a chance to say I do, gives a mother a chance to see her sons first steps, a boy to graduate high school, a chance for one more love, one more trip. A chance to live the best life possible before we get our wings, because I promise every life is worth it.

To see or believe

Every single day you pass hundreds of people, never giving their story a second thought.

And then you see someone different and assume you know their story.

 If I had wires all over my breaking body and went downstairs from the hospital for dinner a lady would whisper “she is very sick”.  No, I’m just here for a sleep study, I will politely say as I order a big mac.  I will sit in my room looking out at the park thinking how no-one really sees or believes something unless it is visible. That no one understands until they have something physical to fix their eyes upon. I will think about the one night that everything is ok, is the one night that everyone will finally see just how sick I am. I will understand that all is it takes is some wires to show the truth.

People believe in ghosts, angels and other beings. Some say you can just feel it, like a shiver going down your spine when the wind turns. You will see a figure at the corner of your eye and think you saw a ghost. You’ll have a flick of the wheelchair feeling that this all seems too familiar and you will you also see her in the supermarket, eyes piercing green resting near the magazine rack.

You hear him at a sports game among the crowds of screaming fans. Some will have wheelchairs and walking sticks, while others you won’t understand as they sit in priority seats on the train.  You will see our red lipstick and bandannas as we laugh at the silliest things and you’ll smile thinking about how amazing our life is.

Then one day you may hear the story of the most beautiful girls, but you don’t look sick you will tell her. You will need to understand that not every tragedy is visible. Not everyone needs to have a wheelchair or IV tubes beneath our skin to be sick. 

Feel the heart that beats too fast even when he isn’t in the room.

 Hear the screams at night because it’s happening again.  

See that the heat pillow isn’t for warmth and believe that it is real.You may scold us

There are people worse off than you. There always will be. 

 Reality is that transplants should not be a topic for nineteen year old girls.  Best friends shouldn’t be made during hospital trips and hot doctors shouldn’t take the place of hot school mates. We should be exhausted after dancing the night away not walking a block. I shouldn’t be able to feel pressure in my lungs after I walk, and she should be able to run.

You say ‘oh well, you don’t know any different so it is ok’

 Sometimes that is true. Some of us don’t know what it is like to wake up and be able to breathe without gasping. He doesn’t know what it is like to see, she doesn’t know what it’s like to run. But we should be allowed to dream. Fight for the day that we can walk hand in hand without pain crippling us, without fear from not being able to get out of bed for the next week if we go to that party. We should be able to laugh at the world, be carefree. She should be able to fight and show the world who she is.

We aren’t amazing because we are sick. We are amazing  in spite of it.  

February

Today, the 14^th of February is CHD awareness day. So while you are showering your special someone with much deserved love I thought I’d tell you a story of my heart, on the day that is made for them, and help some friends raise awareness for congenital heart defects. I’m not going to tell you about all the different heart conditions because I’m honestly in no place to talk about any but my own, this is not about anyone else’s story, just my experiences. Everyone’s journey is different, even if their road is the same.

I was born with a Pulmonary Artesia and a Tricuspid Artesia. This basically means that the Tricuspid valve is replaced by a plate or membrane that does not open. The right ventricle therefore does not receive blood normally and is often small. So therefore half of my heart simply doesn’t work. I also had pneumonia a lot when I was younger, mostly in my right lung. Eventually my lung just collapsed and I’ve never had pneumonia again.

I had my first operation at one day old and a shunt at 8 years old. These operations, while they didn’t fix my heart completely gave me time and energy that I would never have without them. After the last operation my cardiologist said that the next step will have to be a heart transplant because my heart is beyond repair.

After my last operation I was pretty healthy, I could run 600 meters on sports day, which was a big change from not even being strong enough to pull out a chair years before.  I needed to rest every now and then and was quite blue from time to time but other than that I was healthier than I had ever been, so by the time I was old enough to realize my differences I couldn’t really feel them. It’s pretty trippy placing your hand over your heart and feeling a normal heartbeat under scars and muscle, knowing that that small distant beat is only coming from half of it. When you are born with something you don’t know any better, you may see people wondering what is wrong with you, have questions about your purple nails or erratic breathing but somehow I grew up being able to ignore it. It’s pretty safe to say I was a bit of an ignorant kid, I didn’t talk about my illness to anyone, didn’t see the point in telling people about it if it didn’t affect them. All they had to know was that I had a heart problem and needed to rest every now and then, It was my problem, no one else’s.

You see being born with something that you can only see in an ECHO made me think if no-one could see it, it didn’t matter. That’s what I thought, as long as everything seemed normal enough it didn’t matter. It didn’t matter that I could only run half the course on sports day or be dragged around the oval, because I could still run at all. It didn’t matter that I had to use a “boogie” box (nebulizer) because it gave me time to read. It didn’t matter that I had my own private physio sessions in primary school, it was like my own private sports session. I felt normal as I was and I didn’t know any better, but that all changed when I started high school, because I had to grow up.

High school was pretty exciting to start with. I got a bottom locker and extra time to get from class to class because I became breathless easy, different classes and a cool new uniform.  But in year 8 the doctors stumbled upon my biggest nightmare. I honestly kept expecting the world to stop the day I was diagnosed with scoliosis, that everything would happen in slow motion until the explosion happened. But there was no explosion, no silence, no tears, no screaming or jokes; the world didn’t stop because life can’t just stop for the big moments, good or bad. The world keeps turning and you just have to realize that now your world is slightly different to everyone elses. I knew enough about scoliosis to know that it was detrimental to the body. Knowing that my spine, the one thing that enables us to walk, run and do things that we take for granted was growing like a bean stalk, crumbling with my body was petrifying.  The first words the back brace fitter said to me didn’t settle my fears any more. “There is a young girl here who is having rods put in to correct a 60* bend, you need to wear this brace all the time or you’ll get that operation too.”

They say that someone with a heart condition is born with a broken heart. Well I never believed that, because you are born perfect, innocent and precious, it’s the world that shapes us. But in that small room thinking about my predicament, knowing my spine was growing the wrong way, that I could need metal in my back one day, that I had grown with this, that my heart, my poor heart could suffer more blows because of this, now it was defiantly broken.

I was now facing three years of my own version of a badly made horror movie. I would lie on a thin metal bed while they wrapped me in wet plaster so the back brace could be made. With specialists telling me it was ok and a back brace fitter telling me it wasn’t. I was very confused so I tried to wear it as much as I could. I didn’t do sport anymore because the brace restricted my breathing even more and it wasn’t worth all the stress of the brace not working. I would get acid pains in the stomach after I ate or drank due to my stomach unable to expand. It was uncomfortable to sit because the brace would slide up out of position and I was terrified to take it off because I needed to wear it all the time or it wouldn’t work. It was the most stressful, confusing three years of my life and I started to wear it less and less because it was causing more pain and stress than helping. My spine didn’t get much worse but it was still worrying not wearing it as I was supposed to be growing not knowing if it would get worse.

At the end of 2007 we moved to a new city, where my doctors started discussing heart transplants. It’s a big difference between knowing that one day you will need a new organ and being told you have to have one. You know about it but you never really expect it to happen because it has always sat out of reach in the future not the real present. You’d think knowing about something years before would prepare you, but the only thing it does is let you know that your body isn’t going to last a lifetime. I don’t remember the specifics of when we started talking about transplants but I do remember the 3 hour waits at the hospital. The big chunks of it I didn’t hear, sitting in McDonalds concentrating on eating instead of freaking out again, meeting and hearing of people who had successful transplants and the rollercoaster of emotions you never realize you have. I was on the “maybe” list for a long time while the doctors discussed the need to have a transplant now or later while also transferring into adult care so I had a long time to wrap my head around my future, now that it seemed real.

I had heard a lot about a couple of groups linked with the children’s hospital that would be interesting to join, to show that it’s ok to be sick. So after a lot of debating I went on a camp for chronically sick teens in January 2008. With in an hour I was telling a stranger more about my illness and life that I have ever told. It wasn’t like I thought there was no-one else like me, I have met people with scars, burns and bandages. High fived a friend who had mild scoliosis. Hell I spent a week in hospital across from another kid with a similar condition, I was never alone. I had amazing friends and family, but now it was like I had a new perspective on everything.

Over time the cardiologists decided that my heart was stable and I didn’t need a transplant, yet. My spine didn’t get much worse and last time I went to the specialist they said that the brace wasn’t doing anything to help anyway and they were not worried because it wasn’t affecting my lungs. It’s been a few years since then and yes I’m getting tired more easily, puffed frequently and sometimes my lungs just hurt, but that’s ok because life isn’t supposed to be perfect. One day I will have a transplant and go through everything again, but that’s ok too, because sometimes life has to happen a certain way so you can meet people and learn things you never thought you would want to.

I know this blog won’t change the world, or make all the kids being born with heart diseases magically better, but maybe it will let someone know they aren’t alone. That there are many others born with a “broken heart” just like you, breathing and feeling exactly how you feel.

So today, while you are on the tram to your favorite restaurant, smile at the girl with a scar running down her chest. Give your seat to the man who is a little blue around the edges. Don’t roll your eyes at the boy who gets out of his wheelchair to grab those flowers from the top shelf. Laugh with the child in McDonalds with the breathless giggle. And don’t give them pity because life is always beautiful no matter what we can still laugh, live, love and breathe.

Just run

People run for different reasons, perhaps it’s into the rain to have a joyous dance or running after a loved one.Running out of fear, to exercise.To catch the last bus,train,tram or plane. For a cause and some people run just because they can.

When I run it is like everything is gone and nothing can touch me. The world stops spinning and I’m free as the wind carries me past everything as fast as an eagle. There is  nothing but me. No-one to tell me I can’t. No illness, doubts or fears. No thoughts or sound, just my legs carrying me further than anyone could ever phantom. My heart thumps away in my chest until I can feel it under my skin, my hair flies behind me until it turns into straw flying in my face and I feel absoloutly weightless.It isn’t until my legs somehow find the ground that the earth starts spinning again and my lungs start begging for air.

Maybe I’m not meant to be the next Cathy Freeman, but that never stopped me trying. When I was younger I would put on a superior smirk at school race day and tell my teachers I didn’t need a head start before my friend would drag me across the field like a rag doll past horrified teachers. Because when you’re a kid everyone can fly.

I may not be able to walk much sometimes, but running is something else, like magic.That amazing, wonderess thing that no-one can quite understand but makes you happy and believe. It makes life just a little bit more beautiful.One day my body is going to go back to the way it was before all those surgeries and that one that couldn’t be, and until that inventible day I’m going to take life by the hand and tell it too just run.

New year, new things

 I wasn’t going too do a whole “official hello new blog post” but I remeberd Im not doing this just because I can. I want, no,need too. I have been sitting on the idea of starting a blog for a while now, and it’s almost new years which means a new beginning and a brand new year so why not.

I have a congenital heart defect and only one functioning lung due to Phenomia when I was young, but Im alive, so that’s fine. One day I will need a new heart and lungs, so I will be one of the many people on that big old list, but today everything is stable, and Im so lucky. However I decided to take a year off after year 12 too rest and sort out chronic migraines that have been plaguing me,so I did.

 My life has been a big undecieive mess these past twelve months, and I have realised that I may never be smart enough too be a lwayer or gutsy enough too work in a hospital. Im not going to magically be strong enough too be an athlete, or have enough drive too own my own small business, but someone once said that you don’t need to be something big to help people, Just a smile, a few words or even a cupcake can make someones day.so this is me doing something I love,hoping that it makes someone smile when it may be hard too.

Thats all