7 more sleeps and back to hospital I go…

What do I have in common with:

Bananas, pineapples, lemons, Big Bird, daffodils, the sun, cheese, the Mc Donald’s arches, bumble bees, smiley face emoji, sunflowers, a baby chick?

We are all a shade of yellow.

Yes I am turning a lovely tinge of yellow.  It’s quite subtle at the moment.  It is a dirty dull yellow.  I look as though I haven’t bathed in a month.

I mean honestly what’s next???

Actually don’t tell me, I don’t want to know.  I would rather keep the surprises coming…. joy.

Tick tock tick tock.

One sheep.  Two sheep.  Three sheep.

Bed.  Couch.  Bed again.

Sleep where are you?  My friend I need you.  Why are you avoiding me?

Legs stop moving.  Back stop hurting.  Mind stop racing.

Weird body spasms.  Toxins is that you?

Why does darkness bring restless hours?  Why does daylight bring longing for bed and sleep?

Tick tock tick tock….

As much as I live by the rule of “knowledge is power” and that we should all “seek to learn” my recent burst of information download is now plaguing me.  My newly formed understanding of the organ transplant process and the associated statistics is at the forefront of mind day and night.

I have discovered that my chances of receiving a kidney transplant in the near future are very slim.  Yes it is a numbers game, however the numbers are shrinking here in Australia and it doesn’t look like the ship is going to turn anytime soon.  And my problem with this is that  I am not naturally someone who sits back and waits for something to happen to me.  I usually take a proactive approach in my life and I like to ultimately be in control, or at least have a delusional sense that I am in control of where my life is heading.  That is why I can’t just sit back and wait for a kidney to magically appear in four to ten years.  That would drive me crazy.

What are my options?  Wait?  Die?  Or be proactive?

The bad news is that there aren’t too many options.  I don’t have a family member or close friend that can donate me a kidney and I am not going to wait around and put all my eggs into one basket – the national donor registration list.  Therefore the only option left, as I see it, is  to seek a new kidney myself.  I need to find a living donor.  I need to find a kidney hero.

This is where the keeping me awake day and night thoughts come into it.  Am I being ridiculous?  Do I really believe that there is a person out there willing to give up a kidney for me?  A complete stranger?  Do I believe that a complete stranger  will cut open their  body and give me a piece of themselves?  Do I believe that a complete stranger will take time out of their life and go through the trauma of surgery and recovery to give me a kidney?  To save my life?  To be my kidney hero?

I need to believe or at the very least have hope.  I am hoping that if I go out there with my story there might be someone, somewhere that I connect with for whatever reason and we are a match.  When I say it out loud it does sound a bit far fetched.  A bit of pie in the sky thinking.  A bit of wishing upon a star behavior.  But what else do I have?  Yes I will still be going on the national register and I will wait alongside 11,000 other kidney hopefuls  for that magical phone call that my life is being saved by a donor kidney.  But I refuse to die waiting.  I want to live.  I want to celebrate my next birthday and see my nephews go to high school.  So I am going to do everything I can to find a kidney, even if it means taking an out of the box approach.  I am going to try and find my kidney hero through social media.  I am going to put my story out there for everyone to hear.  And fingers crossed my life can be saved.

So stay tuned as I pull together my “seeking a kidney hero” page as even though it is a bit unorthodox, dying is not an option I am willing to consider…..

Today’s mantra:

It’s ok to be scared. Being scared means you’re about to do something really really brave.

I want to be strong.  I want to feel as though I can conquer it all.  I am woman hear me roar!  But right now I feel I am pathetic and weak, hear me whimper.

I’m struggling right now. I have no energy and I’m feeling pretty low.  That’s hard for me to admit.  I’ve been trying my best to keep the mask on.  To keep the painted smile bright.  But my lips are smudging and my mask is starting to slip south with my tears.  My head is heavy.  My mind is foggy and everything seems to hurt.

My drive to combat and keep battling through this is starting to fall behind.  I feel limp and vulnerable.  A friend of mine commented that my life is like a roller coaster.  And she is right.  I’m up and down day to day.  I never know what is ahead of me from one day to the next.  I’m good at adapting and living in uncertainty its just the pain and tiredness that is wearing me down.  Wearing me down, down, down.

Today I struggled.

One foot.  Two feet.  They’re heavy.

Everything hurts.  Why?

Breathe.  Smile.  Action.

Sit. Stand. Think. Talk.

I’m tired.  Smile.  Thank you.

Breathe.  Chest is heavy.  I’m tired.

Home.  Pillow.  Drained.

Today I struggled.

Your mind must arrive at the destination before your life does.

I have a hectic mind.  My mind never stops.  I could be sitting on the train, walking down the street or in a meeting at work and conversations will continually cycle through my mind.  The worst is usually at night when I’m trying to sleep.  I’ll play my day back in snippets or play my next day in hope.  Even when I don’t have anything concerning me or a big event in my life my thoughts will continue in a random manner.  I’ll wonder how many people in the room with me have webbed toes.  Or how I’d look with purple hair.  Could a moth eat a whole dress?

But lately my mind has been consumed with organs.  How many kidneys are there in the world?  Are we ever going to able to grow a kidney that’s not in a pig?  What will it feel like to have a strangers kidney inside me?  Will I die before I get one?

And this has led me to researching the topic of donating organs.   I have found my research quite interesting and it has made my already strong opinion on this topic grow even stronger.

I believe that everyone should donate their organs.  I have always been of this view.  Be a hero in death.  When you die, you don’t need your organs anymore.  Don’t be selfish and hang on to things that you don’t need, be a hero and save lives.  I always believed that it would be such a wonderful dying thought to know that even though you are going to be dead as a person that somewhere a part of you lives on in another human being.  That you gave them the greatest gift possible – life.  I have always been a strong advocate for organ transplants and now that I am one of many waiting in a queue to be saved by a transplant of course I am even more for it!

My research hasn’t changed my opinion on donating organs but it has highlighted the inaccuracy of my thoughts on how to increase our donor rate.

I knew in Australia our organ donor rate was very low, and it is continuing to drop.  We are ranked 20 in the world.  Countries such as Spain and France have as much as double our rate of organ donors.  This low rate in Australia equates to nearly 3 people per day missing out on organ transplants.  For me in the world of kidneys there is about 11,000 of us on dialysis in Australia right now.  We are all waiting for kidneys.  Only 9% of us will be lucky enough to get a kidney.  That means 91% of us will need a machine to keep us alive for the rest of our lives or we will die waiting.  I could be in that 91%.

Prior to my recent burst of knowledge I thought I had the answers to solve this growing problem.  I thought that there are two simple things we need to do to increase our donor rate.  One make it an opt out system. This means that everyone is automatically an organ donor unless we officially opt out through a formal process.  And two we need more campaigns, more education – awareness, awareness, awareness.

Well I was wrong.  These are not the answers to spring boarding our low donor rate.  In fact the Australian government poured $250 million into a campaign in 2014 to promote awareness of the importance of donating organs.  It was a mass media campaign and despite the messages reaching every Australian household our donor rate actually decreased that year.  And the opt out system apparently is also not the answer as families will always be able to veto the donation once the person is dead.  Families have the last say and currently 38% of families override the wish of the deceased to be an organ donor.  This is usually due to the emotion of the moment.

So my question upon reading all this was well what can we do?  With the increase of type 2 diabetes to a level that is being tagged an ‘epidemic’ just the number of kidneys needed in Australia alone will increase dramatically in the coming years.  We need to do something.

Apparently there are two things we can do.

Firstly we can all have conversations with our families saying how important it is to us to donate our organs.  We can explain how we understand that it might be stressful and emotional at the time of our deaths, but we are making it clear that under no circumstances are they to override our dying wish.

Secondly we need to improve our system.  We need to give our medical teams the training and support in identifying early potential organ donors and the skills to work with the families in discussing the organ donor process and getting their buy in before it’s too late.

Apparently these are the two things that will save lives.  There probably isn’t many of us that can influence the way we run our medical practices across Australia but we can definitely all be organ donors and have clear conversations with our families.

It’s been a surprising journey into the statistics and issues of organ donation that we are facing as a country.   It is one that has invigorated me and I think I may have found my path into how I can try and make a difference and do something good out of this situation.

So stay tuned, who knows where I’m heading with this new found knowledge and drive….

Things I can control:

1. My beliefs
2. My attitude
3. My thoughts (sometimes☺)
4. My perspective
5. My honesty
6. The books I read
7. How often I exercise
8. The type of food I eat
9. How many risks I take
10. How I interpret situations
11. How kind I am to others
12. How kind I am to myself
13. How often I say “I love you”
14. How often I say “thank you”
15. How often I express my feelings
16. Whether or not I ask for help
17. How often I practice gratitude
18. How much I smile
19. The amount of effort I put forth
20. How much I spend/invest money
21. How much time I spend worrying
22. How often I think about my past
23. Whether or not I judge other people
24. Whether or not I try again after a setback
25. How much I appreciate the things I have