It’s the night before….again

Tomorrow I return.  Return for surgery number 2.

I feel numb.  I feel a bit broken tonight.

I have no words.

One more sleep.

I can do better.

I’ll be nicer.  I’ll be smarter.  I’ll be kinder.  I’ll be more thoughtful.  I’ll be more considerate.  I’ll be more generous.  I’ll be more forgiving.  I’ll love more.  I’ll give more.

Please let me try again.  Please can I go back?  Please can I start again?  Please give me another chance.  I don’t want this life.  I don’t want to be trapped in this body.  This body that is failing.

If I can go back and start again I promise I’ll look after myself better.  I’ll be better.

Please.  Please don’t make this my life.  I want to get off the merry-go-round of disease.

The truth is I can’t go back.  The truth hurts.  This is it.  This is my life.

I hate my new life. I hate my new ordinary.

I hate it.

Two more sleeps until surgery number 2.

Two more sleeps until more needles and scalpels.

Two more sleeps until more stitches and pain killers.

Two more sleeps until more hospital beds and water jugs.

Two more sleeps until more strangers in uniform and masks.

I’m scared.  I’m anxious.

Hold my hand please.  Don’t let go.

Two more sleeps until surgery number 2.

I won $874.55 in lotto.  That was over twenty years ago.

I am about to start playing a new lotto game.  The difference with this new lotto game is I don’t play with numbers.  The difference with this new lotto game is I don’t win money.

I play with tissue and blood type.

If I win the prize is a kidney.

My new specialist is about to start the testing process so I can play the Kidney Lottery.  Once I have all my test results I can start playing with approximately 4,500 other Australians.  One by one we all register our results into the lottery.  And we wait.  We all wait for a generous donor to leave behind a kidney.  A kidney that matches our test results.  It’s a lottery.

BINGO.

One day my results will match a donor.

One day my results will be drawn from the pool of needy recipients.

One day I will get a new kidney.

One day I will win the lotto again.

The Kidney Lottery is my new game.

Step 1:  Hold syringe and pull cap directly down to expose needle

Step 2:  Continue to hold syringe and with the other hand grab a fold of stomach skin

Step 3:  While holding the stomach skin push needle into skin

Step 4:  Push down on the top of syringe and inject the fluid, stop once fluid is all gone

Step 5:  Let go of the stomach skin

Step 6:  Pull the syringe out of the stomach

This is my new circus trick.  I will be injecting myself with hormones three times a week.  These hormones will help me to produce red blood cells and carry oxygen around my body.  My lack of red blood cells is another side affect of saying goodbye to my kidneys.  Joy.

Today I did all my pre-admission tests for my next surgery and I jabbed myself with hormones for the first time.   After jabbing myself I cried.  I cried as I walked from the hospital to the train station.  It wasn’t a sobbing cry.  It was more of a silent cry, with stinging hot tears that rolled down my face.  Tears that I couldn’t stop.  Tears that I couldn’t control.  At first I thought they were tears of pure exhaustion from my long day at the hospital. But now upon reflection I think the tears were a mixture of exhaustion and relief.

Relief that I’m starting to understand my new world.  Relief that I’m starting to feel less like an intruder and more like part of a team.  The best thing that has happened on this journey, so far, is being fired by my first specialist.  My new specialist has taken me under her wing.  I feel protected and I feel that I now have someone in my corner.  Someone who truly cares, someone who listens and has no ego.

My new specialist has also shared her team with me.  And they are lovely!  I keep wondering why they are being so nice to me? But then I remember we all have the same mission.  We all have the same purpose.  We are all focused on saving my life.  Every test.  Every needle prick.  Every cut and every stitch are all for one thing.  To save my life.

This new team that I’m now a part of don’t know me like my friends or family know me.  Yet right now they understand me more than anyone else.  They understand what I’m going through.  They understand my battles. They understand what is behind me and what is ahead of me.  I also understand that I need them.  I need to be a part of this team to survive this journey.  I need to embrace them as part of my new world.  My new ordinary.  I need to cherish this new team and trust them.

Despite the pain and the exhaustion I can feel positivity creeping in.  I can feel the momentum of moving forward.  These past few weeks and the next few ahead will be chaotic.  Getting through two surgeries and starting dialysis is the hardest challenge of my life – so far.  But I feel as though I’m building my safety net.  A safety net of friends, family and now my medical team.  This safety net gives me courage and confidence to keep moving.  To keep fighting.

I feel lucky to have people in my corner cheering me on.  I owe my cheerleaders a lot.  I owe my cheerleaders my life.

I will rise to this challenge.  I’m not a quitter.

Keep cheering please.  I applaud you as I know it’s not an easy role to play.

I applaud you and I thank you, as I need you.  I’m not ready to perform without a safety net.

Not yet.

It’s been two months since I was first diagnosed with kidney failure.

I’ve learnt a lot in two months.  I’ve learnt new words like fistula and cannula.  I’ve learnt about kidney dialysis and transplants.  I’ve learnt about super arteries and catheters. The list is long.

I’ve also done a lot in two months.  I’ve had more tests than I have fingers.  I’ve had litres of blood drained from my body.  I’ve had scans, ultrasounds, biopsies and tubes surgically inserted into my heart through my neck.  I’ve changed.

In two months I’ve adapted.  I’ve had no choice.

Tomorrow I am back at the hospital.  It will be an all day event.  I will meet with my anesthetist, admission nurse, dialysis nurse and specialist.  I will be measured, weighed, pricked and prodded.  I will pee in a cup and give up more blood.  By the end of the day I will be ready for my surgery next Tuesday and have my first dialysis session booked in.  I will also be walking away tomorrow with a set of needles and a sharps box.  Starting tomorrow I will be injecting myself daily with medication to help my red blood cells and oxygen levels.

A month ago, even two weeks ago, tomorrow would be as daunting as climbing Mount Everest or swimming with sharks.  But tonight as I lay here I’m not overcome by anxiety for what tomorrow brings, I’m calmer.  I think the calm is a result of familiarity.  I know what to expect tomorrow.  I now know how to navigate from room to room without the assistance of a friendly face or hospital signs.  I know which corridors are short cuts,  where to get the best cup of tea and I’m on first name basis with the clinic receptionist.

Two months ago I didn’t know this world existed.  Now I am living in it.  I am living in a world of needles and plastic gloves.  A world of illness and sad stories.  A world that survives on hope and innovation.  I am new in this world but I already understand the language.  I already use the currency.  It’s quickly becoming my world.  A familiar world.  It’s quickly becoming my new ordinary.

I can feel myself changing.  How could I not change? I’ve been thrust into this new world that is rapidly becoming my new ordinary.  And my new ordinary requires a different approach.  It requires a different focus.  It requires a different me.

Two months ago I was diagnosed with kidney failure.

“The world ain’t all sunshine and rainbows.  It’s a very mean and nasty place and I don’t care how tough you are it will beat you to your knees and keep you there permanently if you let it.  You, me, or nobody is gonna hit as hard as life.  But it ain’t about how hard you hit.  It’s about how hard you can get hit and keep moving forward.”

– Rocky Balboa

I have a new specialist and she is brilliant!

My new specialist listens and explains why.

My new specialist is going to plan my treatment and surgeries with me.

My new specialist treated me like a human being.

My new specialist has given me hope and a light at the end of the tunnel.

My old specialist fired me today because I wouldn’t put a tube in my stomach.

My old specialist fired me today because I defended my body.

My old specialist fired me today because we couldn’t connect.

My old specialist fired me today and I’m glad.

Thank you.

I have two tubes sticking out of my chest.

One of the tubes will transport the dialysis fluid into my body and the other tube will take the dialysis waste out of my body.

This is what my tubes look like.

This is how my tubes go into my neck and through to my heart.

It’s weird to think I now have these tubes in my body.  But I definitely know they are there.  They hurt. My chest and neck are still recovering from the tubes being inserted.  I’m very sore, swollen and bruised.  But I know that the swelling will go and I will heal.  These tubes are now my lifeline.

Tomorrow I am back at the hospital getting a post operation check up and I’ll be seeing my specialist.  We are going to work out my next steps with dialysis.  Now that I have my tubes, most likely I’ll start dialysis this week.  I will also be finalizing all the bits and pieces for my surgery next week.  Eight more sleeps and I’m back under the knife.

It’s all a bit full on.  There is no stopping it now.  It’s like a train with no breaks, just full steam ahead.

I hope I can keep up.

I am back in my comfort.  I am home.

Thanks Mum for the past 24 hours.  Thank you for the soft landing.  Thank you for your warmth and place of rest.  Thank you for the nursing and the care.  Your love and protection is a magic prescription.  I couldn’t do this without you.

Today I feel more awake, more alert.  The fog of the surgery and drugs has lifted and my senses have returned.  I can unscramble my thoughts and reflect on the progress that we have made.

The surgery went well.  I now have a catheter that hugs my collar bone and tubes that hang just above my armpit.  They aren’t pretty but they also aren’t that obvious to the passer-by.  I am not happy about having tubes sticking out of my body, however I am pleasantly surprised at how easy they can be hidden under my clothes.  I am relieved.

The worst part at the moment is the pain and the look of the black string stitches. I am having difficulty turning my neck but this should hopefully pass once the swelling goes down and the protective tape is removed.  I can feel the catheter inside my body.  It is a bit uncomfortable and weird but as with anything I know I will get use to it over time and eventually I won’t notice it.

On the positive side I am alive and I have taken a big step towards my dialysis.  I am also feeling more prepared for my next surgery.  I now know the process. My next procedure will take place in the same environment with the same surgical team.  Familiarity is a good thing.

I also think my outpouring of raw emotion last night did me a lot of good.  Leading up to the surgery I had a lot of anxiety and bottled emotion.  Last night the flood gates were opened and as a result today I feel a bit lighter.  A bit brighter.

None of this is easy.  I didn’t want any of this and I didn’t expect to be dealing with organ failure at this time in my life.  Or at any point in my life.  But who truly knows what is around the corner?  Who truly knows what life is about to throw at them?  I certainly didn’t.  All I can do is continue to move forward.  All I can do is be grateful for the good that I have in my life.  The good that I have around me.

One step at a time.

Tonight I go to bed thankful for the care I have received.  Thankful for the love I feel.  Thankful to see the sunrise and sunset.