Circus Show Day 230

“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.

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