I’d give anything for a peaceful night of sleep….anything…

It is called the snowball effect.  The snowball effect is a situation in which something increases in size or importance at a faster and faster rate.  The more successful you become, the more publicity you get and the publicity generates interest and in some instances sales.

I am wondering how much it takes to influence a snowball effect?  The other week we held a morning tea at my work to raise awareness on kidney disease.  My very close friend at work organized it as a way of showing support for me personally.   But she also recognized that there is a very important message about kidney disease that we need to get out there as one in three Australians are now impacted by a kidney related illness.  Our morning tea was successful on the day for reaching our goals of raising money for kidney disease research and building awareness within our organization but it now seems there was an unexpected knock on effect.

A facilities management organization hold annual quiz night charity events and they invite their local contractors to participate.  The contractors pay for the tickets to attend the quiz and they also donate prizes for raffles, door prizes, quiz answers etc.  It is apparently quite a large annual event.   Through their interactions with South32 (my organization)  they have become aware of the morning tea that we held for kidney disease and have decided that they would like to choose Kidney Australia as their charity of choice for this year’s quiz.  They would also like me to be involved and share my story on the night.

I feel honored that they have thought of me and my story to promote the charitable gene in their organization.  I am obviously passionate about kidney research as I need a kidney and believe that our current life saving options can be improved with technology.

I know that this is only one small step in promoting kidney awareness but surely every conversation helps.  Every quiz night helps.  And at the risk of sounding selfish is this my balance?  Would this also help me?  Currently my purpose is work.  Work is giving me the motivation to get up and out of bed in the mornings.  Work is giving me the interactions that I crave and need to keep me focused on fighting this disease.  But work has now become my main focus and outlet.   So would sharing my story at charitable events be my balance?  Would this give me more than just one dimension in my life?

I hope this is the start of a snowball….

Thank you weekend for allowing me to rest.

Thank you weekend for sharing unconditional love.

Thank you weekend for giving me time with my friends.

Thank you weekend for helping me grow in conversation.

Thank you weekend for showing me why my battle needs to continue.

Thank you weekend for not giving up on me.

Head up.

You’ve got this.

You are alive.

Go live.

You are stronger than you think.

Head up.

The intent of this blog was to help me as an outlet to express my feelings and thoughts.  It was ultimately meant to be used as a type of therapy.  A journal to capture the ups and downs of my kidney failure adventure.  Now nearly twelve months since my diagnosis I would say that it has worked.  I have become quite attached to my blog.  I have turned to it in times of frustration, heartache, darkness and loss.  My blog has become a bit of a crutch,  something that I depend on to be there when I need it.  It has become a way for me to vent without laying burden.  It has also helped me find clarity in my thoughts and reactions.  At times it has even proven to be my saviour.

This blog has been a positive tool during my hardest hours but it has also been an instigator of distress within some circles of family and friends.  At first I was confused.  I couldn’t understand why those close to me would struggle to read my posts and why they would react negatively.  But over time I came to realise that it was mainly due to two reasons.

Firstly, my ramblings that I post are in my head and usually I don’t share the same thoughts verbally.  For example I might express in my blog that I was having a tough week.  That I was down and struggling to understand how I was going to get through the challenges ahead of me.  On that same day I might have lunch with a friend and we would chat and laugh about other topics in life.  Later that evening when my lunch date went home they might open my blog and read that I was struggling.  This could then trigger feelings of confusion as I didn’t mention that at lunch.  They would question my honesty and wonder about the truth.  Was I struggling as I wrote in my blog?  Or was I actually ok as I said at lunch?

The second reason why my blog caused a few issues over the past twelve months is that my posts are raw.  At times my raw descriptions and emotions have been too confrontational resulting in an outpouring of concern and disapproval for my decisions and actions from some friends and family members.  This has been difficult for me to deal with as I believe that my posts shouldn’t be tailored to address my audience.  I believe that I should be able to write my uncensored feelings and thoughts.  I want my writing to depict as closely as possible the journey I am going through, showing the impact of kidney failure on my physical and mental health.  And I believe that as the author of my blog I get the right to decide the content.

Despite some issues that my blog has caused, overall I have found it enjoyable and therapeutic to write my posts.  But all good things must come to an end and my time in posting about my kidney journey is nearly up.  I said I would write about the year I said goodbye to my kidneys and in a couple of weeks that year will be over.

I am going to miss this blog.

What’s next?

It’s been nearly a year since I heard the words that would change my life forever.

“You have stage five kidney disease”.

“What does that mean?”

“Your kidneys have failed”

“What is the next stage after stage five?”

“There is no stage six.  You will need a transplant.”

And today I am still learning how to live with kidney failure.  It’s been a bumpy road with lots of ups and downs.  Lots of tears, tantrums, loss and heartache.  There’s also been unexpected friendships and learnings.

It’s been nearly twelve months.

Clip on organs is a thing…..

“I was laying on an operating table, completely vulnerable, shaking with fear and from my cold surroundings.   It was traumatic.”

“I know.  You are not having surgery.”

“What never?”

“No just for now.”

The other week I found myself in a situation that rocked me to my core.  At the time I was a wreck over the near miss however now as time has passed I know it was a valuable learning experience.  I was about to have surgery that would push me into my worst nightmare.  If the surgery went ahead the dye that would have been used during the surgery would have destroyed the last 7% function of my kidneys pushing me straight onto dialysis.  There would be no turning back.  I would be hooked up to a machine three times a week to stay alive.  My worst nightmare.

I have since discovered that the near miss was a result of accumulative events that could have been avoided.  But I can’t change the past.  All I can do is be grateful that my sliding doors moment ended in a positive way and that I am still here fighting the good fight.  I am still not hooked up to a machine.  And this week my doctor confirmed that I can continue  the fight.  She has confirmed that I won’t be having surgery as there is no safe way of my veins being fixed.  We will just have to wait to fix my veins and this will be when I finally have to commit to permanent dialysis.

This is the number one question I get asked when discussing my condition.  “Are you on dialysis?”.  “When are you going on dialysis?”.  I can answer the first question but not the second question.  I regularly visit my renal clinic and every time I am there I ask the same question – “When will I need to go on dialysis?”.  The response is always consistent.  They don’t know.  They are unable to predict.  Many people with the same kidney function as me (7%) are already on dialysis, but that is not what they are gauging me on as everyone is different.

Currently I am controlling my minerals through medication, injections and a new lifestyle including diet and the amount of sleep I get.  I can also still pee.  Yes pee.  That is the main measure.  Once I am unable to pee I will need to go on dialysis.  I find this quite amusing as I use to curse having to get out of bed in the middle of the night and freeze in the cold tiled bathroom while peeing.  And at work I would get annoyed when I was in the middle of something important and I would have to dash to the bathroom. Yet now this inconvenient activity is the difference between me living my new ordinary as normal as possible and being hooked up to a blood draining machine three days a week.  As a result these days I embrace my need to pee day or night.  I welcome the activity and hope it never stops.

The past month has been one of milestones.  I travelled to the other side of Australia and I saved myself from dialysis through my sliding doors moment.  Sure I am going to end up on dialysis one day.  But that day is not today.  I can still pee.

I miss you.

I wish you were here.

What would you say to me?

Would you tell me to be stronger?

Would you tell me that it is all going to be ok?

What would you do?

Would you wrap your arms around me and kiss me on my forehead?

Would you be my cheer leader?  Urging me on morning, noon and night.

What would you feel?

Would you be proud of me?

Would you hurt for me?

What would you see?

Would you see through my painted smile and fake courage?

Would you see my pain and broken spirit?

Would you see me?  Your youngest one struggling and in desperate need of a rock.

I’ll never know.  You are gone.  But I am still here.

I miss you more than words can say.

I wish you were here Dad.

Exhausted.

That’s all I have.