Good news!  Great news!

I love Christmas.  And today I received my first Christmas present.  It was delivered by my specialist and it came in the form of a decision.  A decision to stop my dialysis and delay it until after Christmas.  The best present ever!

My body is still stressed and recovering from my two surgeries.  My toxins are also up and down.  So the decision of the day is that I stop dialysis.  I stop.  I rest.  I recover and stabilise.  I will also get an iron infusion, keep up my injections and watch my diet.  I will take a break from the invasive life support and live freely over Christmas.

This decision has made me very happy and this is the best Christmas present I could have hoped for (ok apart from the obvious of a new kidney).  Today I smiled and laughed in a way that I thought was lost in another world.  A world that I no longer lived in.  A world that no longer exists, for me.  But today I left the hospital with a skip in my step.  I left the hospital feeling lighter and more positive about my new world.  I was smiling.  I felt energised.  I felt good.

And I’m excited for this feeling to arrive just in time for Christmas.  I love Christmas.  I love everything about it.  The trees.  The lights.  The colours.  The fun of family and food.  The sharing of stories and the sharing of life and love.  This year Christmas is bringing with it a different tone.  A tone of gratefulness at a new and different level.  I feel lucky to be here.  I feel lucky to be alive.  I feel lucky to see and share this Christmas with my family and friends and I plan on making the most of it.  Especially now that I won’t have to deal with dialysis until after Christmas.

It’s been a tough year.  A year of shock and change.  However, I do feel that the cloud is starting to lift and I’m starting to see the blue sky.  I know I have huge challenges ahead of me but I believe we have put down good foundations with the surgeries and the taste of dialysis.

I know that I’ll look back on this time as a dark period.  Even now I read back through my posts and I feel the heaviness of my sadness and grief.  But I believe this darkness is shifting.  Yes I’ll still have hard days but I must believe of the promise of tomorrow.  I must believe that my days ahead are brighter than recent past.  I do believe.  I do believe in a better tomorrow.  I do believe that more positive posts are to come – I promise.

I love Christmas and I believe in the promise of 2016.

Life is not about how fast you run or how high you climb but how well you bounce.

I am lost.  I am in limbo.  I am stuck between two worlds.  My old familiar world and my new forming world.

My old world, pre-kidney failure, is one of design.  My design through choices that I made.  My home.  My job.  My friends.  My clothes.  My activities.  All my choices.  Choices made by a capable adult in an effort to design and live a life that fulfilled passions and wants.  Choices to bring happiness and joy to my day to day life and the people around me.  Choices that drove my goals.  Choices that I learnt from through successes and failings.  Choices that I owned and held myself accountable for.

In my old world I had choices.  My world wasn’t perfect.  My choices weren’t perfect, but it was the life I chose to lead.

My new world is kidney failure world.  It isn’t post kidney failure yet as I’m still living through it.  This world is still forming.  This world so far lacks choices.  There is no design in this world.  There is no ‘pick a path’ or multiple choice.  Instead I feel as though I am stuck on an escalator.  An escalator that I didn’t choose to get on.  An escalator that I can’t stop.  An escalator that I can’t get off.  An escalator of no known destination or stops.

In my new world I feel powerless.  I feel a loss of control.

Today I still have a foot in both worlds.  My old world is still in my grasp and my new world hasn’t swallowed me yet.  I am trying desperately to not let go of my old world, of the old me.  But as each day passes I can feel it piece by piece slipping away.  Piece by piece of me.  Piece by piece of my world.  I can feel my familiar existence getting sucked away into my new ordinary.  My new ordinary of no design.  My new ordinary that I didn’t choose.

How do I bring my two worlds together?

How do I escape limbo?

Who am I?

How life changes in the blink of an eye.

Two months ago my weekends were spent with family and friends enjoying beach walks, eggs benedict and champagne dinners. This weekend I lay alongside strangers in a hospital bed. I lay alongside strangers in a silent battle for my life while eating frozen cheese sandwiches and sipping lukewarm tea through a straw.

This is my reality.

This is my new ordinary

We all know the first level solution to technical issues is the classic ‘reboot’.  Most of us by now will know to apply this problem solving activity ourselves and will switch our computers on and off before reaching out for help.  Today I discovered the dialysis equivalent of the IT ‘off’ and ‘on’ problem solving technique.  It is the ‘bed tilt’.

The ‘bed tilt’ is a move that involves lowering the head of the bed and raising of the knees and feet simultaneously.  The end result is a laying down position with a slight bend in your knees and your feet are above the level of your heart.  It is actually quite comfortable and I have found myself quickly falling off to sleep when put into this ‘bed tilt’ position.

The ‘bed tilt’ seems to be a miracle worker and can be applied as a solution to many situations that may occur during a dialysis session.

When you have a headache = bed tilt

If you feel nauseous = bed tilt

If your blood pressure is low = bed tilt

When you feel light headed and dizzy = bed tilt

If you are getting cramps = bed tilt

The powers of the ‘bed tilt’are strong within the dialysis community.  Today I experienced ‘bed tilt’ first hand.  My second dialysis treatment did not go too well.  I was experiencing quite a bit of pain and my blood pressure was emergency low.  As a response my nurses kept implementing the ‘bed tilt’.  By half way through my dialysis session I was dangerously close to spilling head first out of bed.  I decided at that point not to raise any further awareness of pain or distress.

After two dialysis sessions I have come to the realisation that dialysis isn’t a walk in the park.  It is going to challenge me mentally and physically.

Dialysis will challenge me mentally because of the environment and pain associated with the treatment.  It is difficult to shut myself off from the other patients as we are all laying side by side in an open room.  Yesterday a young girl screamed and was quite distressed when the nurses were putting the needles into her arm.  It was difficult to hear the screaming and it was another reminder that we weren’t in Kansas anymore.  It was a reminder that I was spending my Saturday in a hospital ward.  It was a reminder that I was sharing my day with a group of strangers all battling to stay alive.

The physical side of dialysis is just as daunting as the mental side of it.  At the moment I am getting my dialysis done through my chest catheter so I am not having to go through the needles in the arm just yet.  The needle approach will occur in about six weeks once my arm has healed from surgery.  This plagues me as I am not looking forward to needles the size of a pen being pushed into my veins every few days.

Even though I’m not on the needles yet yesterday I could feel the blood flow through my chest tubes and into my heart.  It was uncomfortable.  It felt similar to heart burn.  I also had cramping in my legs and crippling back pain.  My nurse explained that these symptoms are from the changes in my toxins.  For years my body has been functioning with high levels of toxins due to my kidneys failing.  Now through dialysis my body is being stripped of these familiar toxins.  The pain and symptoms I am now experiencing is my body trying to get use to this big change.

In a nut shell I can expect to get worse before I get better.  Not exactly what I wanted to hear but at this point in my journey I am not surprised.  Living with organ failure is hard.  It is complex.  And dialysis is not a silver bullet.  It doesn’t hold all the answers and it brings with it different challenges.

Today I learnt the power of the ‘bed tilt’.

Today I learnt how steep my road is.

Today I learnt who I need bedside my bed.

Friday night.  Friday night use to be my favourite night of the week.  It symbolised the end of the working week and the promise of freedom.  Two days of freedom to be whoever you wanted to be.  Two days of freedom to do whatever you wanted to do.

Tonight is Friday night.  Friday night in my new ordinary symbolises the loss of freedom.  It symbolises the promise of needles, tubes and hospital.  It is the night before my next dialysis  session.  It is the night before my nightmare is once again proved to be reality.

My dialysis schedule includes every Saturday.  Starting tomorrow I will be spending my Saturdays hooked up to my magic machine.  Saturdays will become  one of my fighting days.  Saturdays will become one of my big girl pants day.

Tonight I’m still scared of tomorrow.  I now know the process and what to expect, but I’m not sure whether that is better or worse.  What I do know is that I don’t choose this life.  This life will not grow on me.  Time will not encourage fondness.  Attachment will not creep in.  I will not accept this life as forever.  I want to keep fighting this existence and keep fighting for me.

Living on a machine is temporary.  My promise of freedom is not lost.  I will follow the rules.  I will do the tests.  I will listen and trust.  And I believe that one day I will win the lottery and I will be ready.  I will be ready for the prize.

Friday night is not my favourite night of the week.  Not now.  But I believe it will again be a night of promise… one day.

I have retreated.

I have retreated to a place of warmth and care.  A place where I can let my gaurd down and not be judged.  A place where unconditional love wraps it’s arms around me and holds me tight.

I can feel myself healing.  I can feel my shoulders lower and my stomach settle .  I can feel my mind clear and my heart slow.

Tomorrow came and tomorrow went.  Now we are spinning at full pace on the merry-go-round and there is no stopping.  There is no getting off.

But I’m ok. I’ll be ok. I wasn’t ready for the ride but I was prepared.

Two more sleeps and I am back on my magic machine, my life saving machine.

Until then I’m retreating.

“I can’t breathe. I don’t want to do this.  It’s all too much.  Enough now”

I wanted to scream.  I wanted to let them all know that it was enough.  That I wanted to stay in bed.  My arm was still sore from surgery and I couldn’t take more pain.  I couldn’t take more needles.  I couldn’t take more poking and prodding.  I just couldn’t take anymore of anything.

Two surgeries in less than two weeks and now my first dialysis session.  I felt overwhelmed. It was all weighing down on me.  I felt as though I was drowning.

But I didn’t scream.  I didn’t cry.  I held back the tears and I kept quiet.

As I tried to pull the covers over me and hide away from it all I saw my Mum.  She was holding onto the end of my hospital bed as if she needed the support.  She too looked weighed down.  She too had tears in her eyes and from where I lay I could see and feel her hurt.  Her hurt for her daughter.  Her hurt for what I’ve already been through and what she could see still ahead of me.

I had no choice.  I had no escape.  I couldn’t hide.

Twenty minutes later I was climbing out of my wheelchair and into another hospital bed.  But this hospital bed was different.  This hospital bed was part of my new ordinary.  It was my dialysis bed.

As I crawled into my new bed in the dialysis ward all I could see was my magic machine.  It stood as tall as me and as wide as a door.  It dominated the room and in some strange way it looked strong and capable.  Which was a good thing as my life now depended on this machine.  After a brief introduction to my magic machine I was hooked up and ready to go.  It was at this point that I couldn’t hold back anymore.  I couldn’t hold back my tears.  Tears of uncertainty and fear streamed down face.  What was this going to feel like?  Will it hurt?  Will I be able to cope?  Will I be able to cope with seeing my blood leave my body through the clear plastic tubes and into the machine?  But my tears didn’t last long as before I knew it we had started.

As the machine started I watched the tubes turn from clear to red.  It was weird watching my blood leave my chest catheter and slowly move through the tubes across my bed and into the machine.  As I watched this life saving process I was unsure as to whether I could physically feel the moving of blood through my body.  It didn’t hurt but was there a slight cold feeling as my blood drained away from my chest through the tubes?  Was I imagining it or was it real?  Hours later I still can’t decide whether the cold feeling was in my head or not.  However,  I do know that during the session I did end up having real feelings of dizziness and nausea.

After two hours of blood cycling, tears and body twitches I was done.  My first dialysis session was over.  i had done it! Finally after  all the sleepless nights.  After all the tears.  After all the words of denial.  After all the anxious waiting and procrastination I had finally completed my first dialysis session.

Was it daunting?  Yes.  Was it painful?  No.  Do I want to do it again?  No.

Dialysis is a life saving activity.  It is an activity that is now at the core of my existence and is an unavoidable part of my life.  But I don’t like it.  And it will take time for me to accept it. It will take lots of time for me to accept it.

These past two weeks of surgeries, tests and dialysis has pushed me to my limits.  It has been without doubt the biggest challenge of my life.  And at times I felt as though I was walking a tight rope without a safety net.  I have been doing my best to balance all aspects of my life and with every step I had the pressure and threat of losing my footing and falling.  Falling down my rabbit hole of sickness and despair.  Never to return to the world I once knew and loved.

And in a way I have fallen down the rabbit hole.  My world has changed.  And changed forever.  At this point in time I don’t believe I have fully acknowledged or come to terms with these changes and the new ordinary that is forming around me.  I am home recovering but the familiar surroundings and comfort of home hasn’t wrapped me in warmth or filled me with calm.  I don’t feel at ease and I am itchy and uncomfortable in my own skin.   I feel on edge.

Despite how I’m feeling I am still moving forward.  I am still fighting the battle with all I’ve got.  In the past two weeks I have survived two surgeries and completed my first dialysis session.  But it’s more than that.  I have learnt so much.  I have jumped mental and personal hurdles that outweigh the physical aspect of this challenge and I feel as though a lot has been achieved in a small amount of time.

I do feel  different.  And I do feel overwhelmed.  But I also feel proud of the momentum and the amount of progress we have made in forming my new ordinary.

I’m alive!

Today was a big day in my new ordinary.  I had stitches removed from my neck and my dialysis tubes were flushed, cleaned and redressed.  But the main event of the day was my operation to form a fistula in my left arm.

This procedure joined my vein and artery together and formed a super artery.  This super artery is the fistula.  This is what my needles will be jabbed into every time I have dialysis so that I can be hooked up to my blood draining magic machine.

It will take up to three months for my fistula to heal and be ready for dialysis.  So in the meantime we will use my neck and chest tubes that I had inserted during surgery last week for dialysis.

My body has been through so much trauma lately.  I’m impressed with how my body is continuing to put one foot in front of the other.  Yes it has failed me in my life of normality but it is putting everything it’s got left in our chase for life.  And the next step in our chase for life is dialysis.

I start dialysis tomorrow.  At 3pm tomorrow for the first time I will be hooked up to my magic blood machine.  My magic blood machine will keep me alive.  It will take all of my blood out of my body.  It will filter my blood and then pump it all back into me.  This will take about 6 hours.  It’s my blood cleaning magic machine.  My machine of life.

As I lay here, listening to the man in cubicle 84 snore for Australia, tomorrow consumes my thoughts.  I’m anxious about my first time on my magic machine.  What will it feel like?  Will it hurt?  Will I feel better?  Will I cope with watching tubes of blood swirling around me?

For me it is daunting and disappointing that my life will depend on a machine.  Without the magic dialysis machine I would die.  Therefore once I start on this machine I can’t stop.  I cant stop until I get a transplant. In this life changing situation I feel a sense of loss.  A loss of control over my body and life.  A loss of independence and decision making ability.  I feel trapped without any options and feel as though I am at the mercy of my disease.

Tonight obviously I’m feeling the lightest I felt in a long time, thanks to hospital drugs.  The one positive about being in this place.  I am trying my best to take one day at a time and am working hard to fight this battle.  It is a tough and draining battle and some days I feel more positive than others.  I find this evident when I read back through my blog.  I’m up and down.  But I do understand that this is the nature of such a life changing journey.  It’s a roller coaster journey.  And one that I’m sure will continue in this topsy turvy fashion.  It’s going to be a long ride.

I survived surgery number 2.

Here we go again!

Waiting.  Surgery number 2.

I’m scared. I don’t want to do this. Don’t call my name.

I want to run.

Please hold my hand please.

Wish me luck.