Torch of Life

What struck me most about The Torch Of Life event for organ donation were not the buckets of tears I wept during the Movie Nicholas’ Gift, it was talking to Reg Green, Nicholas’ father.  20 years after his son was killed.   The nadir, he said, was Nicholas’ death itself.  Ever since I became a mother, I feel tragedy more viscerally.  I know many of you feel this too.  The unimaginable, the loss and death of your child.  I can think of nothing worse….

But because they chose to donate Nicholas’ organs, only joy came out of this personal tragedy.   Nicholas’ organs went to 7 different recipients.   The 19 year old girl who received Nicholas liver had just gone into a coma. Her brother and mother had died of liver disease.   Now she is a busy bustling mother herself.  How could that not be joyful?

The death of young Ahmed Khatib, a Palestinian killed in the cross-fire might have resulted in more suicide bombers.  Instead his grieving father donated Khaled’s organs to Israeli children.  It was an ultimate defiant act of peace.  There were several lives saved by this selfless act.  Including an orthodox jew, who wasn’t entirely comfortable with his dying daughter receiving the liver of a Palestinian.  It saved her life. The movie “Heart of Jenin”  showed us that there is such hope to heal nations even in the senseless death of a loved one.

I was moved to tears throughout the event, which included two films, various speeches, and a walk for life.  Throughout we had the inspiring presence of Nicholas’ father Reg (who lives in California), and Ahmed’s brother from Palestine (he lives in Toronto)!

We can learn a lesson that in grief, we can give.  In giving, we heal.

Below is Karen Hurd Stacey of the Stacey House https://www.facebook.com/happyliversociety.org with Dr Yoshida of VGH.  Karen who received a liver transplant last year, gives a home to those needing one during their transplants.  More importantly she gives support and advice to people facing this scary situation. Dr Yoshida is a beacon of light to his patients.  His motto is “Not to Worry”.

a karen and dr y

Below is Darvy Cullerton, double – lung transplant recipient.  He never expected to live past 31 years of age having suffered from cistic fibrosis his whole lifvxe.  He is newly and happily married and 36!

aDarvy Calleton

Katie Powell (below) is a gal who donated her liver to her brother.  Woo Hoo Katie.  Her site https://www.facebook.com/LiverGiverKatie!aKatie Powell

Below is George Marcello – a man on a mission.  He received a liver transplant and hasn’t been able to stop going.  He runs and walks thousands of miles to raise awareness for organ donors.  He took the torch of life to be blessed by the pope (who supports organ transplants by the way).  http://www.torchoflife.com/
a George marcello www.stepbystep.ca

We marched on City Hall….

a vancouver city hall

Walking with the torch are Nicholas Dad, Ahmed’s brother and Karen Stacey.

a start of walk

Taking the torch to City Hall.

a arrival at city hallb

Councillor Adrienne Carr acting as Deputy Mayor receives the Torch carried by Nicholas’ Dad and Ahmed’s brother.

a coucillor carr greeting torch

a councillor Carr

Below Eunice Barriga, grateful heart transplant recipient.

a heart transplant recipient eunice barriga

Photo op!

a photo op

This is the website to register online in BC https://transplant.bc.ca/OnlineReg/bcts.asp

In addition to the movie starring Jamie Lee Curtis there is a touching video of around 12 minutes long you can see here about Nicholas.

http://www.youtube.com/watch?v=yA8671CyM7w

I promised to send someone the speech I gave.  Might just as well post it here for those of you who are curious about my story.  If it inspires just one person to donate….

5 years ago I was blissfully unaware of the path  I was heading on.  As the saying goes, ignorance is bliss.  I speak to you today as a mother, which automatically makes me  a daughter and grand-daughter.  The web of your interconnectedness is just as wide.  But at the end of the day we all daughters and sons.  I’m half Indian half English, so according to the Indian culture I can simplify it as follows:

If you’re older than me I will call you aunty or uncle.  If you are the same age as me I will call you brother or sister.  It pushes past the who what why, the clothes we wear and the roles we play.  We are all pretty much the same underneath our skin.

Except for health.  And blood types.  It’s because of my A+ bloodtype that I’m standing here about to tell you why I gave away 2/3 of liver of my liver 2.5 years ago.  The thing is: that it grows back.  What do you mean it grows back?  Well it does.  So many educated people don’t know that.  Mine grew back after about 6 weeks.   From one healthy liver you get two healthy livers as Dr. Buscowski told me.  This is a miracle.  Liver is the only internal organ which regenerates.

I actually volunteered a student at the University of Chicago Wyler Children’s Hospital.  This was in the early 90s when they were just experimenting with parent to child transplants.  They were doing the first live liver transplants back then on wee ones.  Volunteering with those kids back them, I never dreamed that I too would be in their situation, waiting for my liver to grow back.  The glamorousness pushing an IV pole around.  Sick as dog.  And totally beyond the point of caring that my backside was hanging out.

Technology has worked miracles.  We can donate just about anything, but only the liver grows back.  As much as I hero-worship the medical team, they are not gods or the creator.  They have  managed to prolong life.  This is the miracle of modern medicine.

Being a liver donor was a unique blessing.  I was able to save my father, Arran from premature death.  Not only that but we were able to hop on the wellness train together.  Let me just say for the record I am not a masochist.  I have a low pain threshold.  I didn’t enjoy being sick, time away from my little girls.  But was worth it, it was a no-brainer.

So here is a brief synopsis.

In 2008 Dr Yoshida told my dad, he would need a transplant.  This was due in part, to a genetic condition called Alpha –1 Anti-typsonase.  I was living in Italy with my husband and 2 young children at the time.  I immediately offered my liver.  And I was just as promptly refused by my mom and dad.  You have young children!  What about them?  Don’t you talk to us about this again!

So secretly I did all my blood tests in Italy- it was to be our last year there.  My dear husband supported me.  Heck! Pascal even got his blood typed so he could be considered as a donor.  But it wasn’t a match.  I felt the hand of destiny guiding me.  Everyone who got tested wasn’t suitable.  Besides I was the tallest possible donor.  Your internal organs positively correlate to height.  Taller you are, bigger your organs.  I was closest relative, the tallest relative and with A+ bloodtype.   I didn’t have the Genetic Condition that dad had that my grandmother had.

Dad surprisingly did turn for the better which lasted to 2010.  I was waiting in the wings ready to jump in, when he took a turn for the worse.  He turned into a bag of bones, with a huge distended Belly and stick thin arms; he was more in the hospital than out. I had mentioned to the medical team that I wanted to donate my liver several times (out of earshot of my parents).   Each time, they smiled and said great!  So I figured I had communicated my desire; I had been tested (in Italy) and was good to go.

However, I didn’t realize that doctors are prohibited from soliciting living donors.  Even if you tell them you want to donate, they are forbidden by ethical rules to pass your name on to BC Transplant.  I didn’t know that.  This explained why nobody was contacting me from BC Transplant.  I don’t know how I made the connection.  But I contacted BC Transplant.  If you are in this situation this should be your first step.  Learn from my mistake.  Don’ test yourself. Forget about results being from a foreign country and in foreign language.  Heck those doctors won’t accept blood work that they haven’t personally ordered.  The testing process took months.  I was hoping dad would not succumb to a random infection in the weeks before.  I said a prayer with every heartbeat.

We were given the date March 7th, 2011

We survived the ordeal and after a year or so felt much like our old selves.  Dad is travelling now which is why he couldn’t be here.  And I’m so happy for him.

The way our health is going, it is inevitable that you will know someone in your family needing an organ transplant.   It may be you, it may be your brother or your son.  Please sign up.  I understood that other countries don’t face this organ shortage that we have here in Canada.  It’s a funny feeling waiting for someone to die.  Most people who need organs die on the waiting list, paradoxically waiting for others to die.

If I told you we could eliminate the waitlist with two simple words, would you believe me?  The laws are currently set up for what’s called “opt-in”.  That means everyone who wants to donate (like on their driver’s license) has to “opt in”. The other system is “opt out”. Recently Urguay and 4 other countries set up presumptive consent.  That means you opt out.  If you don’t want to donate your organs you don’t have to.  But for those who forgot to check the box, this could save your brother, your friend, your mother, your daughter.  This is what presumptive consent is.  Join me in advocating for the laws to be changed.

In the meantime, there are some very sick people in this building.  They are dying just like my dad was.   The only thing that can save them is an organ.  Please give the gift of life.  Give so they can live. And until we figure out how to change these laws, tick off the box that makes you an organ donor.

2 thoughts on “Torch of Life

  1. Ratana Stephens

    How was your speech received? How was Eric Y? You have brought tears in my eyes Love you Mum

    Sent from my iPad

    Reply
  2. Eve

    Me too. Very moving piece, beautifully written. Many years ago I knew a 19 year old who died waiting for a liver transplant. As her days grew shorter,she and her parents hoped desperately that absent a human donor, they could get a pig or non-human primate liver. Approval was never given and undoubtedly such a transplant would have failed. I never heard living donors discussed; perhaps no one was doing them back then. She might well be alive now had they been possible.

    Reply

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