I don’t want surgery

I don’t want a huge ugly vein running up my arm

I don’t want tubes sticking out of my chest

I don’t want needles

I don’t want to be kept alive by a machine

I don’t want any of it

I want a normal life

I want to be well

I want to go to sleep and wake up from this bad bad dream

I want to be someone else

I don’t want to be me

“You rock it.  Go make it your bitch.  You’ve got this.”

I shared with you my fear of looking horrible after my surgery.  I’ll have an ugly arm with a huge twisted vein running up it and tubes hanging out of my chest, visible for everyone to see.  Without blinking you told me to simply ‘own it’.

I absolutely love your attitude and advice.  You know who you are.  Thank you for bringing sunshine into my days.

“That’s it.  We are at the end of the road.  There is no more time.  You’re kidneys are done.  If we don’t get you on dialysis ASAP only bad things will now start to happen.  We can’t push through anymore.

We have lots to do to get you ready.”

And yes we did lots! I was poked, pricked, slapped and pulled.  I was weighed, measured and covered in gel.  I laid down, I rolled over and I bent like a pretzel.  I sighed, coughed, cried and laughed.  I was grateful, overwhelmed, tired and sore.  Yesterday was a long long day in hospital. And at the end of it all my next steps were planned.  My fate was signed.

My first surgery is next week.  My first surgery is to get me ready for dialysis.

During this surgery I will have two main procedures.  I will have a catheter (tubes) put in my chest and I will have my veins cut open and connected to form a super artery.

The catheter in my chest will be used immediately for my dialysis.  It will be used to connect me to my dialysis machine through two needles.  I will use the catheter for about 3 months while the veins in my arm heal and grow into the super artery.  Once the veins in my arm are healed we then stop using the catheter in my chest and start using my super artery.  Two needles will be put into my super artery in my left arm and will be the connection to my dialysis machine.

I will start dialysis immediately after surgery, through my chest catheter.  I will be hooked up to the dialysis machine three times a week for six to eight hours each time.

So that’s it.  That’s my new life.  And it is about to start.  I have no choice.  I have no other option.  If I don’t have surgery and do dialysis I will die in a few weeks.

I’m not ready to die.

I’m also not ready to live on a machine.

I cried a lot yesterday.  I cried a lot today.  Does that make me weak?  Should I hide my tears and only cry on my pillow?  Do I need to be careful who I cry in front of?  Will people think I’m weak and that I should just get on with it?   Do people think I should have accepted it by now?  Should I care about how people judge me?

I do.

What am I crying about the most? Is it my loss of freedom?  Or is it the thought of being kept alive by a machine?  Am I crying out of fear?  The fear of losing my career?   The fear of needles three times a week?  The fear of hemorrhaging? The fear of being physically ugly and deformed by the large twisted super vein that is going to run up my arm? Or is it the pain?

I am not sure exactly what my tears are for.  Maybe a combination of all my fears and questions bundled with exhaustion, pain and a general feeling of being overwhelmed.  One thing I know is I can’t hold back my tears and I’m sorry for crying on you, friends and family.  Thankyou for your shoulders.

I have no words of wisdom today.  All I have is a path that I must travel.  I need to dig deep to stay on this path.  And I know I will.  But I can’t promise it will be a journey free of tears or bad days.  All I can promise is to give it my best shot.  My best go.

That’s all I’ve got.

It’s not a good day.

It’s a bad news day.

It’s a screaming day.

It’s a crying day.

It’s I can’t do this day.

It’s I can’t believe this is happening day.

It’s hate hate hate kidney day.

It’s I don’t want to be me day.

It’s a bad day.

I’m hurting.  I’m sad.  I’m crushed.

One more sleep.

I’m hanging on.  I’m not feeling too good.  Tomorrow I get my next steps.

Stay tuned…..

“I don’t feel well.  Can I stay home please?”

“What do you mean you don’t feel well?  Exactly where aren’t you well?”

Being sick as a kid wasn’t easy in my household.  Approval to stay home from school wasn’t granted to a vague declaration of a stomach ache.  It took precise and detailed description of pain, bodily fluids, energy levels and appetite.  I literally would have to be half dead with a limb falling off before Mum would give me the all clear to stay home and curl up on the couch with my lime cordial and SAO biscuits.

Mum and I now laugh about her interrogation parenting style.  She calls it her tough love approach.  At the time, as a kid, I’m not sure about understanding the love bit but I definitely recall the tough part.  And all these years later as I reflect on my own approach to health I believe I am carrying on my Mum’s legacy.  I believe the tough part of her approach has rubbed off on me and has influenced how I deal with my own illnesses as an adult.

I’ve never been one to go the doctors.  Well not a GP, I see other specialists regularly.  But I’m not one to race off to my local practice every time I have a head ache or sore throat.  I take a bit more of a “I’ll be alright” approach to my health.  I now realize that the ‘I’ll just push through’ strategy isn’t a very successful one when it comes to maintaining good health.  I now realise that if your body starts to hurt or do strange things it usually means something is wrong or something has changed.  It usually means time to go and get checked out by a professional.  Someone who knows how the body works more than you and google.

About six weeks ago I finally dragged myself to my local GP and told him my symptoms, in great detail.  We ran some tests and in less than 24 hours I was in emergency with my first diagnosis of kidney failure.  Tonight I lay in my bed consumed by these same symptoms.  They have returned in full force.  They have returned and this time I know what they are.  I know what they mean.  I know I can’t push though. There is no shrugging of the shoulders and “I’ll be alright” this time.

Tomorrow will come.  Tomorrow will come and with it a declaration to my doctor.

“I’m not feeling very well.

Do I need to go back to hospital?

Please help me.”

If sleeping was an Olympic sport I would win gold.

“Have you found a kidney yet?”

Where do I look?  Behind the couch?  In my bedside drawer?  The deli section in Woolworths?

This is my delema.

My specialist encourages me to ask my family, my friends for a kidney.  This, according to my specialist, is apparently my best bet for health.  My less invasive route for survival.  My other option is go on dialysis and then the waiting list for a donor kidney.  In Australia the process to get a donor kidney is that I must go on dialysis first and then I can register on the donor waiting list.  The average waiting time in Australia for a kidney is four years.  And the main reason for my specialist wanting me to find a kidney and not go on dialysis are the associated risks with dialysis. There are all sorts of complications that come with dialysis as well as the lifestyle impact.

My delema of accepting a kidney from a family member or friend is putting them through the traumatic experience of tests and surgery.  It isn’t simple.  There is a lot to go through.  And it is not guaranteed success.  What if my body rejects the family or friend kidney?  Then they went through all that pain and suffering for nothing.

I would feel guilty.  Guilty for their generous gift that I didn’t accept.  I would also live in fear that they too would fall ill.  That their only kidney somehow would also fail them and then they are facing the same fate as me – dialysis and transplant.  I just couldn’t live with myself knowing that they have to live their life like I am now.  I wouldn’t wish this on my worst enemy let alone someone I love.

So in answer to your question, my specialist, no I haven’t found a kidney yet.  And I won’t be seeking out a match in my family or my friends.

This is my fate.  I will run the gauntlet.  I will be living on a machine whether it takes two years or ten.

I will be strong.

I will survive.

Six more sleeps until my next appointment.

My expectations have not been met.  I expected a strategy.  I expected a plan.  That is what I had built this day up to.  But it failed.  Somewhere along the way my schedule and clarity of what’s next got lost.  Instead I had more tests and a visit to a dialysis clinic.

Initially I was upset that my expectations hadn’t been met and that my day didn’t go to plan.  But now upon reflection of my day I think the visit to the dialysis clinic was a positive step forward.

So what did I get today?

1.  I had more tests showing that my organs are still failing – yep no change there.  Good to know.
2. Another appointment.  In 7 more sleeps I get to finally talk about surgery and dialysis clinics and schedules.
3. A visit to a dialysis clinic.  I visited the clinic, saw the process and heard stories.  Sad stories.  Real life stories.

The  visit to the clinic was the biggest step forward for me today.  All the images that I had of a dialysis clinic, the images of how the clinic would look and feel are no longer fictional.  From my visit today I now have reality.  The reality of a dialysis clinic is vastly different to what I had formed inside my head.  Reality is a large grey cold hospital room full of beds.  Rows of beds full of sick people.  Sick people under covers hooked up to magic machines.  Large magic machines with lots of tubes and flashing lights.

I felt out of place in the dialysis clinic.  I felt like an intruder.  But I wasn’t.  I am one of them.  I will become one of them.  I will be lying in a bed, under the covers with a machine attached to my limb.  My life will depend on that machine.  A blood draining machine will be my life line, my closest companion.

How will that change me?   Will it suck life out of me?  Or will it give me life?

Is this a glass half empty or glass half full question?

I think my dialysis clinic visit has given me more determination.  More determination to not let this kick me.  I might be bruised and battered.  I might be scared and anxious.  I might be hurt from the needles, sore from the cramps and nauseous from the drugs.  But I’m still me.

Maybe I needed to see reality.  Maybe I needed to see my new world in action.  In action before I entered it.  Maybe this is what my strength is for.  I don’t need to accept this world in its current form.  I can change it to suit me.  Sure I’ll need to change my routines, my habits, my lifestyle.  But maybe I don’t need to change me.

I’m alive.

I’m chocolate for breakfast.

I’m happy Friday.

I’m champagne and pyjamas.

I’m Fee.