TRUE STORY:

Once upon a time there was a woman who lived in Perth, Western Australia.  This woman had chronic kidney disease and was waiting on the national donor register for a kidney.  But after years and years of waiting her health was deteriorating and things were looking a bit grim.  So the woman decided to take action and be proactive in saving her own life.

The woman from Perth placed an advertisement in a Western Australian newspaper – “Kidney Wanted”

The woman was pleasantly surprised by the response.  She received over 100 letters offering her kidneys.  Out of the 100 offers she was able to find a match.  A young man gave her a kidney and saved her life.

They had a photo together printed in the Western Australian newspaper after they both recovered from surgery.

The END.

I love this story.  I love it because a young woman was tired of the situation she was in and against all odds she empowered herself to do something about it and make change happen.  I also love it because it was before social media so she had to take an advert out in the newspaper.  I wonder which section she put it in?

Even though I love this story it was told to me today as a bit of a warning.  My specialist explained that despite the story having a happy ending it wasn’t all smooth sailing.  After the woman placed the advert she shared it with her doctors and nurses at her dialysis clinic and the response was outrage.  This was not how organs are donated.  They come from a friend, partner or family member.  If you don’t have anyone you know that can donate then you do your treatment and go on the national donor list.  And you wait.  You wait and you hope that a kidney comes your way before its too late and you die.  That’s how its done.

Why?  Why couldn’t this woman go out and try and save her own life?  Why did she have to sit, wait and risk dying?  Because of fear.  The medical world are fearful that the person willing to donate their organ to a stranger has unethical drivers behind their gift of life.  That this generous good Samaritan is really a wolf in sheep’s clothing.  There is concern that somehow they will hold it over the recipient of the kidney and ask for money or a new car.  That somewhere, somehow money or gifts will change hands and that breaches laws and ethical medical behaviour.

The woman who placed the advert in the paper is alive today because of her own actions.  She has moved on and is enjoying life.  The medical world however hasn’t moved on and apparently I should be prepared for some negativity from the medical arena on my social media approach to finding myself a kidney.

I totally understand the concern and I did a lot of thinking before I put myself out there on Facebook.  I thought about how bizarre it was to ask people around the world to consider giving me a kidney.  I thought about how I would deal with the responses and also how I would deal with no responses.  I weighed up all my options and I decided that I ultimately had nothing to lose.  When death is an option I think most people in my shoes would give anything a go.

So yes I have launched a social media campaign in my quest to find myself a kidney.  And yes it is unconventional and risky.  But dying is not an option I’m willing to consider.

If nothing else I am enjoying connecting with people.  New connections and old connections, the past few days have lifted my spirits and has given me hope.  Hope that I will find a kidney from a true good Samaritan – my kidney hero.

Why does time seem to past so quickly when you are dreading a future event?  It’s the same amount of minutes in an hour and the same amount of hours in a day.  But time seems to be on fast forward.

Tomorrow I’m heading back to the white walled sterile castle on the freeway.  The place where my nose itches.  The place where my body shakes from the cold air.  The place where fear engulfs me.

Tomorrow I’ll make the dreaded journey.  I’ll smile and nod through all the questions.  I’ll sit, stand and produce limbs as requested.  I’ll silently cry as I’m poked and prodded.  I’ll stare away and think of sunsets as the needles are unwrapped and jabbed into my veins.

Tomorrow I’ll be reminded of how my life has changed.

Tomorrow I will see my future and miss my past.

Tomorrow I will continue in the fight for my life.

Tonight please let me sleep and dream.  Dream of a healthy life.

If you don’t like something, change it.  If you can’t change it, change the way you think about it.

Connecting with new and reconnecting with old is a kidney failure gift.  This week I have been reminded of the positives of my current health situation.  Through my kidney failure diagnosis I have made new friendships and rekindled old.

Without my diagnosis perhaps I wouldn’t have the pleasure of having these people in my life.  By going on this journey my life has become richer for the connections I have made and no doubt will continue to make.

Thank you kidneys for giving me the gift of new and old friendships.

Thank you to my new friends.  Everyday you give me energy and strength to put one foot in front of the other and fight for my life.

Thank you to my old friends for reaching back out to me and for reminding me of who I am and how memories of the past can help shape future journeys.

Yesterday I received a gift.  A gift so special it touched my heart and made me cry.  Not cry out of sadness but cry as I was so overwhelmed by the generosity and thoughtfulness of the gift.

Jodi thank you for the beautiful hand made quilt.  I can’t put in words how much it meant to me and how much I’ll cherish it.    The gorgeous bright colours will cheer me up on my hardest days and I know it will become my favourite companion on my dreaded hospital visits.  I usually freeze when I am going through my day long tests and treatments.  But not anymore as I’ll have your quilt with me.

Jodi you have reminded me that people are kind and have heart.  Your gift has spurred me on and I will be going back to hospital on Monday with my quilt in hand and determination in my heart to keep going and face my next hurdle with everything I have.

THANKYOU.

Xxxx

7 more sleeps and back to hospital I go…

What do I have in common with:

Bananas, pineapples, lemons, Big Bird, daffodils, the sun, cheese, the Mc Donald’s arches, bumble bees, smiley face emoji, sunflowers, a baby chick?

We are all a shade of yellow.

Yes I am turning a lovely tinge of yellow.  It’s quite subtle at the moment.  It is a dirty dull yellow.  I look as though I haven’t bathed in a month.

I mean honestly what’s next???

Actually don’t tell me, I don’t want to know.  I would rather keep the surprises coming…. joy.

Tick tock tick tock.

One sheep.  Two sheep.  Three sheep.

Bed.  Couch.  Bed again.

Sleep where are you?  My friend I need you.  Why are you avoiding me?

Legs stop moving.  Back stop hurting.  Mind stop racing.

Weird body spasms.  Toxins is that you?

Why does darkness bring restless hours?  Why does daylight bring longing for bed and sleep?

Tick tock tick tock….

As much as I live by the rule of “knowledge is power” and that we should all “seek to learn” my recent burst of information download is now plaguing me.  My newly formed understanding of the organ transplant process and the associated statistics is at the forefront of mind day and night.

I have discovered that my chances of receiving a kidney transplant in the near future are very slim.  Yes it is a numbers game, however the numbers are shrinking here in Australia and it doesn’t look like the ship is going to turn anytime soon.  And my problem with this is that  I am not naturally someone who sits back and waits for something to happen to me.  I usually take a proactive approach in my life and I like to ultimately be in control, or at least have a delusional sense that I am in control of where my life is heading.  That is why I can’t just sit back and wait for a kidney to magically appear in four to ten years.  That would drive me crazy.

What are my options?  Wait?  Die?  Or be proactive?

The bad news is that there aren’t too many options.  I don’t have a family member or close friend that can donate me a kidney and I am not going to wait around and put all my eggs into one basket – the national donor registration list.  Therefore the only option left, as I see it, is  to seek a new kidney myself.  I need to find a living donor.  I need to find a kidney hero.

This is where the keeping me awake day and night thoughts come into it.  Am I being ridiculous?  Do I really believe that there is a person out there willing to give up a kidney for me?  A complete stranger?  Do I believe that a complete stranger  will cut open their  body and give me a piece of themselves?  Do I believe that a complete stranger will take time out of their life and go through the trauma of surgery and recovery to give me a kidney?  To save my life?  To be my kidney hero?

I need to believe or at the very least have hope.  I am hoping that if I go out there with my story there might be someone, somewhere that I connect with for whatever reason and we are a match.  When I say it out loud it does sound a bit far fetched.  A bit of pie in the sky thinking.  A bit of wishing upon a star behavior.  But what else do I have?  Yes I will still be going on the national register and I will wait alongside 11,000 other kidney hopefuls  for that magical phone call that my life is being saved by a donor kidney.  But I refuse to die waiting.  I want to live.  I want to celebrate my next birthday and see my nephews go to high school.  So I am going to do everything I can to find a kidney, even if it means taking an out of the box approach.  I am going to try and find my kidney hero through social media.  I am going to put my story out there for everyone to hear.  And fingers crossed my life can be saved.

So stay tuned as I pull together my “seeking a kidney hero” page as even though it is a bit unorthodox, dying is not an option I am willing to consider…..