BIG TENT ATTRACTION:  Dialysis or Death

On Tuesday I was hit with the cold hard slap of reality.  It was my first visit to the dreaded dialysis clinic.  It was an awareness and information session, and by the end of the session I would need to make a decision on the type of dialysis I was going to have.  Tim my dialysis nurse was lovely however quite direct.  Within 15 minutes upon my arrival he delivered a dose of reality with impressive force.

“Fiona the sooner you accept that it is either dialysis or death the better off you will be”

Slap.  Dialysis or death.

Ok so what is option three?  I don’t want dialysis, I don’t want death, I take option three.  What is option three?  According to Tim there is no option three, and by the look on his face he wasn’t messing around.  It was time to get real.  It was time to accept and start dealing with my new ordinary and Tim was determined that it was going to happen then and there.

As Tim worked through his presentation tears flowed and I became aware of the stench of sickness in the air.  It was suffocating me.  I couldn’t breathe.

“Fiona are you ok?’

“I can’t breathe”

“Would you like the door open?”

“Yes please”

I stared at the door.  I wanted to run out the door and never come back.  I wanted to run and keep running until I reached a far off land.  A far off land far far away from diagrams of tubes and sick people.  A far off land of white beaches and crystal blue waters.  A land where my days are spent relaxing  and my biggest decision is whether to have champagne or a mojito.

But taking one look at Tim all my hopes of escape faded.  I had a feeling that I wouldn’t make it half way across the room before Tim  would rugby tackle me back to reality and my chair of doom.  So  I decided against my great escape to a far off land.  Instead I pulled myself together and tried to absorb the information that is going to form part of my everyday life.  My new language, my new ordinary.

What does dialysis do?  When your kidneys fail, dialysis keeps your body in balance by:

• removing waste, salt and extra water to prevent them from building up in the body
• keeping a safe level of certain chemicals in your blood, such as potassium, sodium and bicarbonate
• helping to control blood pressure

What are the dialysis options?  There are two types of dialysis –hemodialysis and peritoneal dialysis.

What is hemodialysis?  In hemodialysis, an artificial kidney (a machine) is used to remove waste and extra chemicals and fluid from your blood. To get your blood into the artificial kidney, the doctor needs to make an access (entrance) into your blood vessels. This is done by minor surgery to your arm or leg.

Sometimes, an access is made by joining an artery to a vein under your skin to make a bigger blood vessel called a fistula.

However, if your blood vessels are not adequate for a fistula, the doctor may use a soft plastic tube to join an artery and a vein under your skin. This is called a graft.

At the start of each treatment two needles are then inserted into your veins and you are hooked up to a machine.  This treatment will be done three times a week, in a hospital or clinic for about four hours.  The whole treatment might take up to six hours.

What is peritoneal dialysis?  In this type of dialysis, your blood is cleaned inside your body. The doctor will do surgery to place a plastic tube called a catheter into your abdomen (belly) to make an access. During the treatment, your abdominal area (called the peritoneal cavity) is slowly filled with dialysate through the catheter. The blood stays in the arteries and veins that line your peritoneal cavity. Extra fluid and waste products are drawn out of your blood and into the dialysate.

You do this dialysis yourself three to four times a day.  The process takes about an hour each time.

Will dialysis help cure the kidney disease?  No. Dialysis does some of the work of healthy kidneys, but it does not cure your kidney disease. You will need to have dialysis treatments for your whole life unless you are able to get a kidney transplant.

Is dialysis uncomfortable?  You may have some discomfort when the needles are put into your arm.  The dialysis treatment itself is painless. However, some patients may have a drop in their blood pressure. If this happens, you may feel sick to your stomach, vomit, have a headache or cramps.

No more that is enough!  I get it, I get it.  I have read all of this, I have seen the pictures, I get it.  Decision time.  Tim I am getting there.  I can still feel the lingering sting of the slap….I can’t breathe.

Dialysis or death…..I choose….champagne or mojito?

“Fiona do you have any questions?”

“No.”

“Fiona the sooner you accept that it is either dialysis or death the better off you will be.”

“Ok.  Can I go home now…… please?”

BIG TENT ATTRACTION:  Acts Of Kindness

A broken wing.  It couldn’t fly. It survived one hit but its chance against another blow were slim.  Without thinking twice he pulled over, grabbed a rag out of the boot of the car and dashed into peak hour traffic.  He scooped up the  feathered creature and carried it back to safety.

That was my Dad.  I was seven years old and I can remember that day like yesterday.  I remember gently handing over our bruised and battered package to a man in khaki who smelt of cigarettes and lawn clippings.  The man in khaki  promised to nurse our new found friend back to life.  I trusted this stranger and I believed the man in khaki would be true to his word.

Leaving the bird sanctuary that day I knew we had done something good.  I had a skip in my step and a full feeling in my chest.  On that day my Dad had shown me what it is to be kind and to look out for others.  He taught me that it isn’t about what you get in return, it is about genuinely caring and giving from a good place within.

Genuine kindness is all around me.  It has arrived in colour, in delicious treats and in words.  It has been surprising and over whelming, but most of all it has been inspiring.  A friend of mine calls it my medicine, and I whole heartedly agree.  The acts of kindness I have been experiencing are urging me on.  They are inspiring me to put one foot in front of the other and face another day.

Today I am not the best version of me.  My wings are broken. But tomorrow is another day.  Thank you.  Thank you all.  Thank you for your belief in me, and your belief that I will fly again.

Acts of kindness you do not go unnoticed.  Acts of kindness you are my medicine.  Acts of kindness I’m forever grateful.  Thank you.

Count sheep.  Warm milky drink.  Lavender.  No electronics.  Dark room.  Fresh sheets.  Warm shower.

Tried and failed.

Sleep, my long lost friend, where are you?

The other day I had a comment flung at me during a conversation and it is still swirling around in my overactive mind.

“Hey you’ll be ok, it’s a bit inconvenient, but you’re still alive”

I know this comment came from a good place and the person who made the comment probably hasnt even thought about it again.  But me being me, I have.  I actually agree with most of the statement.  I will be ok and I am lucky to be alive.  It is the inconvenient bit of the comment that has got me questioning my own thoughts.

Inconvenience to me is waking up at 3am needing to go the toilet, or having to go to the bank on your lunch break.  But in the bigger picture of life does kidney failure fall into the category of inconvenience?

Am I looking at this all wrong?  Am I over thinking and over feeling this situation that I now find myself in?  Have I over complicated it?  Do I just need to take whatever is coming to me in my stride?  No more tears.  No more asking why or what did I do wrong?  Is it time to paint on a clowns smile and get back into the ring?

I am grateful to still be here.  Grateful to be able to feel the warmth of sunshine on my pale skin.  Grateful to still be seeing sunsets and hearing the rumbling of the ocean.  Maybe that’s enough.  Maybe the circus of needles, hospitals and dialysis is just a bit of an inconvenience. Maybe it is time for me to rejoin the living and embrace the joys of life.

I am still me.  I am still Happy Friday and chocolate for breakfast.

The show must go on.

Tired

Sad

Exhausted…

Dear Kidneys

There are times when I want to claw through my skin and rip you out of my body with my bare hands.  I then imagine throwing you down on the ground, stomping on you repeatedly and finally flushing you down the toilet.

Other times I want to beg for your forgiveness. Forgiveness for not listening to your cries for help from within. I want to apologise over and over for not recognising the signs that you were hurt and slowly dying.

Today I want to flush.

Love Fee

BIG TENT ATTRACTION:  Yellow Maze

I’m lost.  Every turn I take is a dead end.  I can’t climb over and I can’t crawl under.  I could try and push through but I am fearful that the thorns and prickly leaves would shred my already bruised skin.

I don’t like this.

Who likes being lost?  In a maze?  Alone?

Nobody can show me the way out.  Nobody is here.  I want out.  Please let me out.  Can I go back to the start?  I’ll try harder. I promise to train harder. I promise to be a better performer.  Please let me go back to the start.  Please let me try again.

I don’t want to play anymore.

Right.  Left.  Left.  Right again.  Left.

I see an exit.  I see two exits.  Which one do I take?  Do I go right?  Or do I go left?

Choose right and I get to put on a new costume consisting of a permanent tube in my stomach.  This tube forms part of my new act.  In this new act I pour two litres of magic liquid down the thin tube. The magic liquid cleans my insides and is then drained out again.  It would take me 45 minutes to perform this act and come rain, hail or sunshine I’d be expected to perform three times a day, everyday.

Choose left and my new costume is a tube in my arm or neck.  My new act involves being hooked up to a machine in a hospital three times a week.

Left or right?  Right or left?

Both exits mean new costumes and drop me down a rabbit hole.  A rabbit hole without cake and tea parties.  My rabbit hole is yellow and smells like disinfectant and vegetable soup.  My rabbit hole opens on Tuesday.

Left or right?

BIG TENT ATTRACTION:  Chocolate On A Stick

Chocolate on a stick!  And not just any chocolate.  Freddo Frogs, Mars bars and even an Aero bar were all given a stick to stand on and strategically placed in a box.  Robin you are a genius!

Thankyou Robin for thinking of me and the creative box of treats. It will be enjoyed and contribute towards my five a day.

You have also helped in reminding me of the joy of simple pleasures.  Like eating ice-cream for breakfast, the sound of the ocean and the smell of my  Mum’s lasagna.

Simple pleasures how could I have forgotten you?

Not all acts need fanfare.  Not all acts need the big tent, colourful costumes and the beating of a circus drum.  Simple pleasures you bring such joy into a complex world.  Simple pleasures you are my life-long friend.  You don’t know goodbyes.  You don’t know tears of broken forever.  Simple pleasures we are in this together, for the long haul.  New acts come and go, but you are here to stay.

Today I received a box full of chocolates on sticks.

Today was a good day.

BIG TENT ATTRACTION:  Pyjama Parade

Don’t cry in the shower with shampoo in your hair – rinse first….

Am I being impatient?  Are my expectations unrealistic?

Where are you?  Where are you when I need you?

Its too quiet.  The silence is deafening.  Come one, come all!  It’s a new show, we have new acts, it’s a new shade of yellow.

Am I being impatient?  Will it take time for the new shade of yellow to be recognised as different?  Will it take time for my new ordinary to form?

My skin feels baggy, tired and old.  It has lost its shape and no longer hugs me like a glove.  Just like when I wash a cheap t-shirt for the first time.  It never comes out the same way it went in.  The neck stretches and the bottom hem line becomes wonky.  It is changed forever.  It has gone from  Saturday afternoon drinking in the sun to a pyjama top.

Am I destined to be a pyjama top?