Ho hum back to the hospital I go.

Today is dressing change and transfusion day.

It’s become my second home.

It’s familiar but still uncomfortable.

If I could go back in time what advice would this older and wiser Fee give to a younger Fee?

I have given this much thought over the past few weeks.  There are many life lessons I would share but when it comes to kidney failure and what I am currently being challenged with I would say three simple things:

1. Drink more water
2. Have regular health checks
3. Be an organ donor

The crazy bit is when I read these three pieces of advice I realize how simple and easy they are.  They don’t require a lifestyle change or lots of money spent on gizmos that lay neglected in the back of a kitchen cupboard.  They don’t require weeks and months of dedication.  They are simple and anyone can do them.

Drinking more water is something that I have only really started to do over the past few years.  Growing up and in my twenties and early thirties I would never have a bottle of water in my work meetings or in my handbag.  It just wasn’t a habit that I had formed.  Now water is the first thing I think of when leaving home or getting settled in for a day at work.  Water is so readily available there is no reason why any of us should go without or deprive our organs of the much needed liquid gold.

Having regular health checks I also neglected in my life.  This is the one that I really do wish I had paid more attention to.  To take an hour out of my life every year to visit my local doctor and do a few tests now seems so easy.  What is an hour?  That hour every year could have prevented the health crisis that I now find myself facing.  That sixty minutes could have prevented all of the pain and heartache that is now consuming my once happy and carefree life.  Just an hour every year and I could be enjoying another Christmas with my family as a healthy and happy adult.

I have been someone that was almost proud of the lack of time I spent with my GP.  I was almost proud that I would push through illness, aches and pains without reaching out to my local doctor for support.  “I don’t need a doctor to tell me what is wrong, I can deal with this”.  How many times did my back hurt me over the years?  How many times did my legs swell without explanation?  How many times did I have a taste of metal in mouth that I self treated with strong mints and chewing gum?

I am not very proud now to say I was a fool.  I am no spring chicken.  I should have known better.  But I didn’t.  I didn’t do regular health checks.  I spent time in denial about my MS and did the minimum I could with that.  I am not too proud now to admit that I was wrong.  I should have listened more.  I should have done what the doctors had asked me to do instead of taking on a MacGyver approach to my health.  If I had been smarter my symptoms would have been confirmed through tests and I would have had early detection of a disease that will kill me.  If I had been smarter I might not be facing life on a machine.

The third piece of advice is the easiest of them all.  Be an organ donor.  It is as simple as ticking a box on your license.  This is actually one that I have done my whole life.  Since I first got permission to cruise the streets at the age of seventeen I have always been an organ donor.  There is something magical to me about dying but living on.  By giving away my organs when I die I get to be a hero through death.  I get to help someone else live and I keep on living.  A piece of me keeps living.  How can anyone not want that?  What a waste to rot in the ground or turn perfectly good organs to ash.  Keep living on and be generous in death I say!

So that’s my top three for a younger Fee.

But I can’t turn back time.  I can’t do ‘if only’.  I now need to face my fate head on.  I need to do whatever it takes to survive.  Right now that is recovering from two surgeries and getting my strength back for more tests so I can get myself on the donor list.  Right now I just want to enjoy a relaxing Christmas with my family and friends.

There is no turning back time.

I have decided to let go of the past.

I have decided to stop dreading the future.

I have decided to live in the present.

Good news!  Great news!

I love Christmas.  And today I received my first Christmas present.  It was delivered by my specialist and it came in the form of a decision.  A decision to stop my dialysis and delay it until after Christmas.  The best present ever!

My body is still stressed and recovering from my two surgeries.  My toxins are also up and down.  So the decision of the day is that I stop dialysis.  I stop.  I rest.  I recover and stabilise.  I will also get an iron infusion, keep up my injections and watch my diet.  I will take a break from the invasive life support and live freely over Christmas.

This decision has made me very happy and this is the best Christmas present I could have hoped for (ok apart from the obvious of a new kidney).  Today I smiled and laughed in a way that I thought was lost in another world.  A world that I no longer lived in.  A world that no longer exists, for me.  But today I left the hospital with a skip in my step.  I left the hospital feeling lighter and more positive about my new world.  I was smiling.  I felt energised.  I felt good.

And I’m excited for this feeling to arrive just in time for Christmas.  I love Christmas.  I love everything about it.  The trees.  The lights.  The colours.  The fun of family and food.  The sharing of stories and the sharing of life and love.  This year Christmas is bringing with it a different tone.  A tone of gratefulness at a new and different level.  I feel lucky to be here.  I feel lucky to be alive.  I feel lucky to see and share this Christmas with my family and friends and I plan on making the most of it.  Especially now that I won’t have to deal with dialysis until after Christmas.

It’s been a tough year.  A year of shock and change.  However, I do feel that the cloud is starting to lift and I’m starting to see the blue sky.  I know I have huge challenges ahead of me but I believe we have put down good foundations with the surgeries and the taste of dialysis.

I know that I’ll look back on this time as a dark period.  Even now I read back through my posts and I feel the heaviness of my sadness and grief.  But I believe this darkness is shifting.  Yes I’ll still have hard days but I must believe of the promise of tomorrow.  I must believe that my days ahead are brighter than recent past.  I do believe.  I do believe in a better tomorrow.  I do believe that more positive posts are to come – I promise.

I love Christmas and I believe in the promise of 2016.

Life is not about how fast you run or how high you climb but how well you bounce.

I am lost.  I am in limbo.  I am stuck between two worlds.  My old familiar world and my new forming world.

My old world, pre-kidney failure, is one of design.  My design through choices that I made.  My home.  My job.  My friends.  My clothes.  My activities.  All my choices.  Choices made by a capable adult in an effort to design and live a life that fulfilled passions and wants.  Choices to bring happiness and joy to my day to day life and the people around me.  Choices that drove my goals.  Choices that I learnt from through successes and failings.  Choices that I owned and held myself accountable for.

In my old world I had choices.  My world wasn’t perfect.  My choices weren’t perfect, but it was the life I chose to lead.

My new world is kidney failure world.  It isn’t post kidney failure yet as I’m still living through it.  This world is still forming.  This world so far lacks choices.  There is no design in this world.  There is no ‘pick a path’ or multiple choice.  Instead I feel as though I am stuck on an escalator.  An escalator that I didn’t choose to get on.  An escalator that I can’t stop.  An escalator that I can’t get off.  An escalator of no known destination or stops.

In my new world I feel powerless.  I feel a loss of control.

Today I still have a foot in both worlds.  My old world is still in my grasp and my new world hasn’t swallowed me yet.  I am trying desperately to not let go of my old world, of the old me.  But as each day passes I can feel it piece by piece slipping away.  Piece by piece of me.  Piece by piece of my world.  I can feel my familiar existence getting sucked away into my new ordinary.  My new ordinary of no design.  My new ordinary that I didn’t choose.

How do I bring my two worlds together?

How do I escape limbo?

Who am I?

How life changes in the blink of an eye.

Two months ago my weekends were spent with family and friends enjoying beach walks, eggs benedict and champagne dinners. This weekend I lay alongside strangers in a hospital bed. I lay alongside strangers in a silent battle for my life while eating frozen cheese sandwiches and sipping lukewarm tea through a straw.

This is my reality.

This is my new ordinary

We all know the first level solution to technical issues is the classic ‘reboot’.  Most of us by now will know to apply this problem solving activity ourselves and will switch our computers on and off before reaching out for help.  Today I discovered the dialysis equivalent of the IT ‘off’ and ‘on’ problem solving technique.  It is the ‘bed tilt’.

The ‘bed tilt’ is a move that involves lowering the head of the bed and raising of the knees and feet simultaneously.  The end result is a laying down position with a slight bend in your knees and your feet are above the level of your heart.  It is actually quite comfortable and I have found myself quickly falling off to sleep when put into this ‘bed tilt’ position.

The ‘bed tilt’ seems to be a miracle worker and can be applied as a solution to many situations that may occur during a dialysis session.

When you have a headache = bed tilt

If you feel nauseous = bed tilt

If your blood pressure is low = bed tilt

When you feel light headed and dizzy = bed tilt

If you are getting cramps = bed tilt

The powers of the ‘bed tilt’are strong within the dialysis community.  Today I experienced ‘bed tilt’ first hand.  My second dialysis treatment did not go too well.  I was experiencing quite a bit of pain and my blood pressure was emergency low.  As a response my nurses kept implementing the ‘bed tilt’.  By half way through my dialysis session I was dangerously close to spilling head first out of bed.  I decided at that point not to raise any further awareness of pain or distress.

After two dialysis sessions I have come to the realisation that dialysis isn’t a walk in the park.  It is going to challenge me mentally and physically.

Dialysis will challenge me mentally because of the environment and pain associated with the treatment.  It is difficult to shut myself off from the other patients as we are all laying side by side in an open room.  Yesterday a young girl screamed and was quite distressed when the nurses were putting the needles into her arm.  It was difficult to hear the screaming and it was another reminder that we weren’t in Kansas anymore.  It was a reminder that I was spending my Saturday in a hospital ward.  It was a reminder that I was sharing my day with a group of strangers all battling to stay alive.

The physical side of dialysis is just as daunting as the mental side of it.  At the moment I am getting my dialysis done through my chest catheter so I am not having to go through the needles in the arm just yet.  The needle approach will occur in about six weeks once my arm has healed from surgery.  This plagues me as I am not looking forward to needles the size of a pen being pushed into my veins every few days.

Even though I’m not on the needles yet yesterday I could feel the blood flow through my chest tubes and into my heart.  It was uncomfortable.  It felt similar to heart burn.  I also had cramping in my legs and crippling back pain.  My nurse explained that these symptoms are from the changes in my toxins.  For years my body has been functioning with high levels of toxins due to my kidneys failing.  Now through dialysis my body is being stripped of these familiar toxins.  The pain and symptoms I am now experiencing is my body trying to get use to this big change.

In a nut shell I can expect to get worse before I get better.  Not exactly what I wanted to hear but at this point in my journey I am not surprised.  Living with organ failure is hard.  It is complex.  And dialysis is not a silver bullet.  It doesn’t hold all the answers and it brings with it different challenges.

Today I learnt the power of the ‘bed tilt’.

Today I learnt how steep my road is.

Today I learnt who I need bedside my bed.