On Tuesday I had a sliding doors moment.  A moment, upon reflection, that could have gone a very different way.  The impact of going through a different door would have affected every aspect of my life.

Tuesday was D Day.  It was a day where once again I was being cut open in the ongoing challenge to keep me alive.  I was having my veins fixed as my super vein had collapsed.  This larger than normal vein in my left arm is needed for when I have to go on dialysis.  When on dialysis we will use a dialysis machine to take my blood out of my body and clean it before putting it back into my body.  To do this needles will be inserted into my super vein and connect me to the machines with tubes.  Therefore it was important for me to go through this surgery on Tuesday.  I needed to fix my vein.  But at the eleventh hour my surgery was stopped.

Why was my surgery stopped?  Well first let me explain what my current number one goal is in life.  My number one goal is to stay off dialysis for as long as I can.  Dialysis is an invasive treatment that involves large needles, machines and hours and hours spent in a hospital bed on a weekly basis.  Yes it is an amazing life saving process that many people successfully incorporate into their lives, however it also brings with it a lot of complications and a new ordinary.  And personally I am not ready for that new ordinary.  I want to try and keep living a normal life for as long as possible. On Tuesday at the eleventh hour I learnt that this goal was about to be destroyed.

I had done all the right things.  I was up out of bed early and at the hospital by 7am, ready for my next round of surgery.  I was anxious and I felt sick.  But I was there, doing everything that my doctors had asked me to do.  I was following instructions.  I trusted that my doctors were competent and scheduling this surgery for me was just another needed step in my journey.

A few hours later I was laying on a rock hard operating table in a room that made me want to run and hide.   I was in the operating theatre.  I felt vulnerable.  I felt scared.  I was ice cold and shaking.  I had masked strangers surrounding me. I was about to put my life in the hands of these masked strangers.   I was trusting them  to take a scalpel to my body.  I was trusting them to fix me.

Before the final sedation was injected into my drip my surgeon wanted to do one last check that I understood what they were about to do.  He started his spiel with saying that what we are doing today is important as I needed to continue with my dialysis treatment.  Stop.  Wait.  What? Red flag!  I am not on dialysis and I have no plans on being on dialysis any time soon.  What is going on here?  He has the wrong facts.

“Um what do you mean continue my dialysis treatment?”

“You are on dialysis aren’t you?”

“No”

“Oh, ok.  I am sure you’ve been told that we are using dye today in this surgery.”

“No, but why is that important?  What impact will the dye have on my body?”

“Well as you are now at 7% kidney function this surgery will destroy that 7% and you will be pushed onto dialysis straight away”

“What?  Why am I only finding out about this now?  I am laying on an operating table and you are telling me this now?  Why would I choose to push myself onto dialysis?  Nobody would ever choose that, I don’t choose that.”

“Your notes say that you are on dialysis”

As he leant down and showed me the notes tears starting burning my eyes.  It was at that moment that I realized my world could have been turned upside down.  It was in that moment that I realized if  this ten second conversation hadn’t occurred I would have come out the other side of this surgery a dialysis patient.  I would have come out the other side of this surgery with a new ordinary in which I would need to be hooked up to a machine every couple of days to stay alive.  My nightmare would have become reality.  I would be living on a machine.  No choice.  No going back.  No days off.  My life would be forever different.  My life would revolve around hospital visits.  My life would revolve around needles, veins and pain.  To live I would need a machine.  This is my sliding door moment.

A few days later I can now reflect back and be grateful for the life I currently lead.  Yes I am ill however it could have been a lot worse.  I could now be dependent on a machine to keep me alive.  I do understand that the day will come when I need dialysis.  I do understand that this new ordinary will eventually arrive.  However, it doesn’t need to be now.

I can also reflect back on my recent experience and take a few learning’s.  I learnt that I need to continue to be inquisitive and ask questions about what everyone is doing to my body.  I own my body. It is the only one I have and it is my job to keep myself safe and to make informed decisions on what happens to me.  I can’t outsource that job.  Nobody is more concerned about my health and how I live my life than me.  And nobody should be.  I am responsible for the life I lead.  I am responsible for what happens to my body and I take that responsibility seriously.

It was a very close escape.  It scared me.  But I also learnt a valuable lesson.

Trust my specialists that they are knowledgeable in their chosen profession and competent in what they do.  But also continue to take responsibility for my own body and make sure that I am informed every step of the way on this journey.

Four more sleeps and back I go to the scary sterile white building of illness and pain.

Four more sleeps and my fashion outfit will be a green backless gown and white stockings.

Four more sleeps and I’ll be sedated so that I don’t feel the scalpel cutting through my skin into my veins.

Four more sleeps and I’ll put my trust in a masked stranger to fix my lifeline.

Tonight I cant sleep.

FACT:  Kidney disease impacts over 1.7 million Australians

FACT:  90% of Australians with kidney disease are unaware of their condition

FACT:  2 Australians every hour die from kidney related diseases

www.kidney.org.au

4 more sleeps and back to hospital I go……

Dealing with a serious illness isn’t simple.  It’s complex.  The complexities not only exist with the physical aspect of the illness but also with the  emotional and mental side and the impact it has on existing relationships.

Not everyone is able to adapt to the challenges that an illness presents.  For the person going through the illness and for the people standing on the sideline it’s at the best intense and at the worst a roller coaster nightmare with no seat belts or safety guards.  It’s a time of such distress and pressure that even the most stable person will turn to tearing out hair and screaming for some relief.  Adapting to the whirlwind of change that is thrusted upon you during a health crisis is a challenge.  I’m learning new survival techniques everyday.  I’m learning a lot.

At the start of this journey I recall having a conversation with a close friend and her partner.  As they sat by my hospital bed they shared their experiences.  One comment from this conversation of insight has stayed with me.  “Through this journey you will learn a lot about the people around you, but most of all you will learn a lot about yourself”.

My friends how right you were.  Yes I’m learning about kidney disease.  I’m learning about hospital systems, insurances and accounting.  I’m learning how to cry in the shower without getting wounds wet or soap in my eyes.  I’m learning about love, loss and relationships.  But most of all I’m learning about me.  My strengths and weaknesses are under a lens and I’m learning about who I am and who I need to be.

This phase in my life is not a chosen path.  I wasn’t prepared for this change and I now find myself navigating through this nightmare blindfolded and without the right tools.  I thought I was digging deep and doing my best to combat this change but now I realise that my best was the best for me.  But it hasn’t necessarily been the best for the people around me.  My best hasn’t necessarily been the best for the relationships I cherish.  I thought by doing everything I could to survive was the best for all concerned.  But I was wrong.  I needed to be more aware of what everyone around me also needed during this time.  My discovery of a failing organ impacted me greatly.  Yes that is true but it also impacted people closest.

In relationships we all take on roles.  Whether it’s the coordinator, the financial guru or the crazy one.  In our various relationships we all take on different roles.  Despite being thrown an illness curve ball I’ve realised that I can’t abandon these existing roles that I have formed in my relationships.  My needs and wants have changed but that doesn’t automatically mean that the needs and wants of my relationships have also changed.  I still need to be the daughter.  I still need to be the friend.  I still need to be the partner and the team mate.  I can’t let my focus of survival consume me, taking all my energy and not continue with my relationship responsibilities.  I can’t retreat to survive.

I’ve learnt that my life has taken a turn that I didn’t choose, but more importantly the people around me didn’t choose it either.  I’ve learnt that I need to hold myself accountable for dealing with my new ordinary.  This is my battle and I can’t expect my relationships to keep my head above water.  I need to carve out energy to heal and survive while at the same time nurture and protect the relationships around me.  I need to understand their needs.  Their needs of lightness.  Their needs of fun and laughter.  Their needs of the relationship that wasn’t built on illness and darkness.  My darkness can’t over flow and impact all that is around me.  No matter how much I’m hurting.  No matter how much I want to curl up in a ball and cry myself to sleep.  I need to think of others and how my behaviour impacts them, our relationship and their needs.  I need to rise above my darkness and not let it splinter and fracture all that I love.

I have learnt I need to be stronger.

I have learnt that I need to dig deeper.

I have learnt about me and the roles I need to play in my relationships.

I have learnt a lot about me and how I need to be better.

My friends you were right.

“There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle.”

Albert Einstein

I decided to run.  I grabbed my backpack, threw in my prized possession and climbed out of my bedroom window.  I climbed out of my window and headed north.  North up the railway line. Two hours later I stopped.  I stopped in the realization that my prized possession wasn’t the best choice as a runaway companion.  My prized possession wouldn’t keep me warm.  My prized possession wouldn’t feed me.  My prized possession, my eight hole Doc Martin boots with yellow stitching, were heavy.

A few hours later my boots and I made a sad and sorry return home.  I was thirteen years old.

I’ve been told that I will learn a lot about myself through this journey.  And yes I am.  I am learning that perhaps I still have a pair of Doc Martin boots in my cupboard.  I am learning that perhaps my middle age is tainted with a thirteen year old voice.  I am learning that perhaps I still prefer to retreat and hide.  Up a railway.  On my own.  Make the noise stop.

I am sorry my friends.  I am sorry my family.  I feel myself wanting to hide.  I feel myself wanting to retreat.   Am I already heading north?   Have I already found my railway in my bed and one thousand count thread?  Am I already making the noise stop?  My way.

I heard you yesterday my friend.  I heard your words of wisdom and reason.   Stop the pattern.  Stop retreating.  Be in the now.

I heard your plea my friend.  Your plea that retreating was not an option.  Retreating would not stop the toxins.  Retreating would not stop me dying.

I heard your words my friend.   I heard your suggestive words on embracing my freedom.  I have three weeks of freedom.  I have three weeks before the definition of my circus is shared.  I have three weeks before the reality of needles and magic machines are upon me again.  I agree, stop retreating.  Be in the now.

Are you free?  Where should we go?

The Silver Lining…..

The pain of my bruised ribs from the mugging dulls my kidney pain.

I have been diagnosed with kidney failure.  This basically means that my kidneys aren’t doing what they are meant to do and we can’t fix it.

The partner of a close friend of mine had a similar experience and he told me that he kept a journal.  He said it helped him at the time to express his feelings and thoughts of what he was going through.  Now years on, his journal has also helped him to reflect on how he felt through his journey and how different it is to where he is today.

I loved the idea and this blog is my journal of my  kidney failure adventure – which I call my Yellow Circus.