“You will get use to it”

Really?  I will get use to a sharp object being pushed through my skin and into my veins?  Well it has been over five months since my kidneys decided to pack it in and I don’t feel any closer to embracing needles as part of my every day life.

I received some advice the other day.  I was told that I will get over my fear of needles once I experience something that is worse.  Once I have the worse experience I can think about it whenever I am about to have another needle shoved in my arm and then it won’t seem so bad in comparison.

Recently I have had a couple of surgeries and lots of invasive tests but so far nothing can over shadow my fear of the pointy one.

I like the theory….I now just need something even more terrifying to happen to me….

8 more sleeps and back to hospital I go…..

I have learnt a lot in the past few weeks.  Mainly I have learnt that social media is a powerful tool and that the human spirit is alive and well.

A couple of weeks ago I sceptically launched a social media campaign in the quest of finding myself a kidney.  That quest has travelled across the country and beyond.  It has reached 30,000 (yes that is right thirty thousand) people.  Out of that 30,000 I am unsure as to how many actually read my page and took interest in my quest.  However, it has been liked over 600 times and I have received over 100 messages.

Social media is quick.  I didn’t realise how much we have embraced it as a society and how attentive we are to it.    I also didn’t expect the amount of encouragement that I have received from complete strangers.  Prior to launching my page I was feeling a bit lost and flat.  I knew that I needed a kidney transplant but I also knew that I didn’t have anyone close to me that could be a donor.  The journey of dialysis and waiting on a national transplant list, with no guarantee that my lucky number would ever come up was a daunting and rather depressing prospect to face.  However, since launching my page I have felt a new lease on life.  The messages of support and the sharing of stories that I am receiving are inspiring  me to continue on my quest, and I am more determine than ever to be proactive in my future.

I can’t express in words my gratitude to everyone who has responded to my quest.  Through the kind gestures and messages of support I am finding the strength to continue on  my journey – day by day.

Thank you for helping me to stay positive and believe that I have a future worth living.

Ups and downs.  Highs and lows.  Peaks and troughs.

Today I walked alone up a busy street.

Today I walked alone without my can that promises a spray of 1000 peppers.

Today I walked alone past strangers without holding my breath.

Today I walked alone and felt stronger.

Today I walked alone and I didn’t think of you or fear you.

Last year you attacked me in the safety of daylight.

Today I walked alone in the feeling of freedom.

Today was an up.

I am a rollercoaster.

Balance no longer exists in my life.  I feel as though I bounce from extremes.  My up days are amazing and I feel as though I could live like this forever.  But then I will hit a low and end up in bed for three days hiding away from the world.

I am sorry for being a rollercoaster.

I want to be balanced.  I don’t want to feel tired and exhausted after sleeping 15 hours straight.  I don’t want to cry while watching the news, or forget that I was meant to meet you for lunch.

I don’t want to be a rollercoaster.

It is World Kidney Day this Thursday 10th March.  Obviously this is not new, however this year I am paying particular attention to it.  I have been reading the messages that are coming out from the Kidney organization and I found this presentation that they are presenting at schools.

Please have a read through.  Even though it is targeted at children, I think we can all learn from it – it is simple and direct.

Kidney Education

Just because your past has been hard does not mean your future can’t be incredible.

The support I’ve received over the past few days since launching my social media quest to find a kidney has been amazing.  I am overwhelmed by all the well wishes and beautiful messages.   My expectations have been exceeded.  And that is what I keep telling myself to focus on.  I want to focus on all the good and positive messages that have boosted my hope for a future and not the couple of negatives messages that I’ve also received.

The sad and heart breaking part about the not so nice messages I’ve received is that they have been from fellow kidney patients.  Their messages have mainly told me to “get in line” and that I need to do my time on dialysis before I can ask for a kidney.  At first I felt sick and guilty, like a little child who was caught with my hand in the lolly jar without asking.  I felt as though I had done something wrong by proactively trying to find a kidney.  It was a terrible gut wrenching feeling as the messages  were aggressive and I felt intimidated.

But now I feel angry.  I didn’t ask to be sick.  I didn’t ask to be fighting for my life.  And nobody has given me a rule book on what I can and can’t do during organ failure.  Are there any rules?  Who do I ask?  And why can’t I put myself out there and ask for a kidney?  I’m not stealing anyone’s kidney and I’m not jumping a queue.  I am creating my own queue.  And right now there is nothing stopping anyone in a similar situation to me from doing the same thing.

Creating my quest for a kidney page was the hardest thing I’ve ever done.  I thought about it for a long time.  What did I hope to achieve?  How will people react?   Will I attract insincere people?  Am I just being a complete fool in thinking and believing that someone would want to give me a kidney?  I thought of so many scenarios and conversations that might occur from me launching such a quest.  But the one thing I didn’t consider was being hated by fellow kidney patients.  This has taken me by surprise.  And unfortunately not a pleasant one.

I am not sure how long I am meant to suffer and fear for my life before I can be proactive and try and save myself.  Maybe I should write back to my fellow kidney patients that are hating on me and ask them.  6 months?  2 years?  10 years?  Well unfortunately for them I have never been one to abide closely to rules.  I am more of a challenger to status quo and I enjoy a bit of chaos and disruption.  So I don’t care what they think.  I am not going to sit back and wait for my kidneys to take me down with them.  My kidneys might be dead but I’m not.  And I have no intention on leaving this world anytime soon.

So to everyone who has been to my page and to everyone for reading my blog THANKYOU! I couldn’t get through this without you.

To you mean fellow kidney patients I feel sad for you.

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.