Category Archives: Livers and Givers

Geez-Louise, Dad (J.K.)

Churn this around in your head.  It’s not that adults produce children.  It’s that children produce adults.

I was mulling about children in light of relatively new evidence that my teenager doesn’t think I’m as cool as she did when she was, say 6 years old. Or even 12.  Or even last year.  I have gone from amazingly cool to occasionally embarrassing. I was dismayed to feel the umbilical chord stretch for the very first time this Fall. We have had such a great run that I thought we would be immune forever. However, I am accepting of my new status partly because I have hope. That the chord will bounce back like a taut elastic.    In time.    Indeed, I am certain of it.

Because I too felt embarrassed by my own dad growing up. Painfully at times, telling my classmates about whole grains and the benefits of vegetarianism and meditation. But I’ve gotten past that. Or maybe the world just caught up?

Well, to be honest, he embarrasses me still. With different things. Here’s a current example; in his just-released TEDx UW talk, he shows a picture of me in hospital, clutching my IV pole and – hold on gentle readers – wearing a non-Stephens’ Sisters Shopping Diet hospital gown.

Joking aside, all the above is a rambling preamble for his wonderful talk. Check it out:

Truth is always stranger than fiction. When people ask me about my dad, I never know where or how to begin. So I’m super stoked that his talk is out. It’s a tip of the iceberg introduction: his paintings, his inspiring life path, his marriage to my (equally interesting) Indian mother and yes even our live liver donation story (now you are in on the hospital gown reference — Heck I’ll embarrass myself if it spurs someone else to donate their liver.)

On the quest for transparency, truth and social justice, it’s normal to embarrass your kids occasionally. Right? But every so often I’m surprised when my munchkins beg in stereo, “Mom please don’t talk about pesticides with [so and so]’s parents.” I smile quietly.  Sometimes I can’t help but say “You will understand when you’re older.” I feel that sharing valuable information with my fellow humans is worth a little un-comfortability. Because if you always stay within your cocoon of ease, can you make meaningful change?       Can you?

What do you think? I want to know.

I’ll close this post with the words of Russell Brand, who will certainly embarrass his kids. (A lot):

“Rebel children, I urge you, fight the turgid slick of conformity with which they seek to smother your glory.”

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.

Two Great Events coming up in Vancouver

Two Great Events are coming up in Vancouver that I wanted to share with y’all. If you can’t attend, send positive vibrations.

OCTOBER 2nd

The goal of The Deeper Side Blog is to inspire change. What better way to embrace change than by celebrating it? How else to celebrate women who are making the step to live clean and sober than by making them queens for a day? In anticipation of their forth-coming nuptials? How about gifting them designer, custom wedding dresses? Custom made Jewellery? How about a day at Zazou Spa?  How about those dresses be none other than upcycled wedding dresses from Pure Magnolia Eco-Bridal Boutique?  Welcome to the ReVamp Gala.

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Celebrating the triumphant struggle of brave women, in front of the beluga whales at the Vancouver Aquarium, Pure Magnolia Eco-Bridal designs will be upcycling wedding dresses.  Specially crafted jewellery will be gifted to the brides by Mirror Mirror Bijoux by Pamela Chang, a local designer. (I have pair of earrings I love by Pamela Chang.) And there will be a fashion show to celebrate.  All proceeds from the event will be donated to YWCA Crabtree Corner (assisting pregnant women with addictions). http://www.puremagnolia.ca/2013/09/inspiration-tuesday-the-ywca-crabtree-corner-brides/

OCTOBER 4TH

Second event is the TORCH OF LIFE is a huge media event, including press conferences, film screenings at VGH and Walk for Life Organ Donation.  https://www.facebook.com/events/510954582320796/

I was a living liver donor 2.5 years ago (yes, my liver grew back). Most people who need organs die on the waiting list waiting for someone else to die (yes it’s a weird feeling being on the wait list waiting for someone to die). If laws were changed then many people who were in my position will be spared the ordeal to save a loved one. Canada currently has an organ donation program where we opt in. This means that unless you have signed up to be a donor, you wont be one. The upshot of Canada’s current system is that most organs are lost to those who need them because, unintentionally, they didn’t sign up. Uruguay Mexico, Columbia and Singapore have recently implemented presumptive consent for organ donation. Presumptive consent means that the default is that you opt out. So if you don’t want to donate your organs, you don’t have to donate your organs.

Torch of Life
Karen Hurd Stacey, in a loving gesture, donated her “Blood Money” to help others. Given a transfusion of tainted blood many years ago, she developed liver disease.  Given compensation by the government and turning a tragedy to triumph, Karen used the money to set up the Stacey House. See my post https://thedeepersideblog.com/2013/05/21/livers-and-givers-karen-stacey/

Karen works tirelessly in the hospitals, volunteering and advising and supporting those people who desperately need an organ. She recently told me about a young man in intensive care who’s barely hanging on, hoping against hope, racing against the clock.  Karen has put together an amazing event to raise awareness for organ donation.  Two films will be shown: stories to touch you: one is about a Palestinian boy killed in the crossfire. His organs went to Israeli children.  In Nicholas’ Gift Nicholas killed while on holiday in Italy.  His parents saved multiple lives donating his organs.  Nicholas lives on.  This makes me cry just writing about it.

To celebrate life and miracles we are given by modern medicine, please come out, see the film, hear what Doctors, donors and recipients have to say and Join the short Walk for Life from VGH to Vancouver City Hall.  Seating is limited for the film.  So get your tickets before they are gone.

Mototravellers

People are moved to give when another person demonstrates sacrifice.

If you click on the link below, and scroll down, you will see a clip of what motivated me to donate to Roberto Di Frassineto.    A jovial Italian, Roberto has a mandate to help orphans, travelling around the world on his motorcycle, to raise funds and awareness. When he can, he travels with others but is usually solo or with one other person.  His dental experience in Mexico struck a chord in me.  Not only is this guy eschewing a vacation with his family and roughing it for the orphans – none of which he has to do – he gets a tooth infection while crossing Mexico on his motorbike.  Roberto’s tooth had to come out.  Those of you who have only experienced the antiseptic atmosphere of North American dentistry will be horrified.  I have had traumatic dental experiences in my 13 years of living abroad. When I watched this clip, I was holding my mouth and laughing and crying and rocking back and forth in my chair.

http://mototravellers.com/category/mexico-2013/page/2/

Roberto

Apart from medical emergencies, Roberto has to deal with primitive bureaucracies and dangerous situations, war zones. I’ve seen photos of some of the flea bag hovels and remote inns in Mongolia.  He does this for the children. Roberto shares his story on a blog and has just started a new leg from Costa Rica to the tip of South America and will bring money to an orphanage in Bolivia, http://mototravellers.com/2ndsegment/

Roberto on bike

I follow his blog when he’s travelling, living vicariously through him. Roberto experiences the “non-touristy” parts of the world.  You can see what he’s up to and hopefully you will be motivated to also give to the innocent, the helpless.

Giving with love

“It’s not how much we give but how much love we put into giving.”

– Mother Theresa

My parents began their life together in debt.  Wed in India in 1969, the young, penniless (rupee-less), multi-cultural couple borrowed enough money for a plane ticket back to Vancouver.  From then on it’s been a historic rise for my parents.

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My mom Ratana Stephens, in her early twenties.

Talking to a very successful lawyer recently, he said, “We in the world of finance see money as a flowing river to tap into and divert.  Your parents have done the extra-ordinary.  They have built their success in actually creating value.” On so many levels.  I had never thought of it like that but he was right.  Nurturing people and the planet is part their triple-bottom line philosophy.  Socially responsible, environmentally sustainable and financially viable.

In encouraging change, we need examples.  What can be achieved? What is possible?  Whose shoulders should we stand tall upon and grow to new heights?  I look to my parents as a template for success.  Not just financially.  Not just in giving back but in making the world safer, providing wholesome organic food as the original and viable alternative to the toxins and chemicals that poison the Earth.  Through their vision, Nature’s Path is standing up for the planet again and again.

Here is a plaque recently put up in Vancouver General Hospital which honours the recent and huge monetary contribution to the Vancouver General and UBC Hospitals.  Dad and I were interviewed on CBC radio earlier this year about the donation.  I gave dad 2/3 of my liver.  Dad gave me life.  I gave him life.  And we give in return.

We give with love and accept with gratitude.

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Livers and Givers – Karen Stacey

“Life loves the liver of it.”

– Maya Angelou

I was a living liver donor 2 years ago and am still working on the book about it “Deliver Me.”  I have met so many true heroes, angel nurses and doctors that it’s hard to keep track.  Much of the time, I feel a halo of love and light (covering the painful memories) surrounding this experience.    Having met other donors, I’ve been humbled by their tales of sacrifice.  Recently I had the honor to meet Karen Stacey.  Her story has moved me to write to today.

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Karen Stacy, founder of the Happy Liver Society

Karen’s story reads like a nightmarish urban myth. It was hard for Karen to tell this story.  Not only is it true and painful but it is also uplifting and hopeful.  With her permission…

Many years ago, Karen found herself in the worst situation an expectant mother can be in.  At eight months of pregnancy, she lost her baby.  Her baby was almost fully grown when the placenta separated from the wall of the uterus. This is a relatively rare occurrence.  I only know about it because this happened to a close friend of mine.  It’s agonizingly painful, the bleeding is tremendous and the mother, who has just lost her most precious hope, is now losing her blood by the litre.  Her baby dead, she must now find the will to live.

Karen was given transfusions to replace what blood she had lost in this tragic series of events.  Although her body eventually recovered, the ache that a mother has for her lost baby never really heals, never goes away.  Karen, a bright, bustling, energetic and strong woman, picked up the pieces of her broken heart and healed her body.  She went on to have two children, work and live her life to the fullest.

Years after that fateful miscarriage, Karen was diagnosed with liver disease.  “How could this have happened?” she asked herself.  What had she done to get liver disease?  When I was going through the tests to be an organ donor, I was asked the same questions over and over again.  Did I go to unlicensed tattoo-parlours?  Had I ever exchanged sex  or sexual favours for money?  Had I ever used tainted needles?  (no, no and no – in case you’re wondering.)  Karen was surely asked all those questions too.  It took a while to figure out, but eventually the medical team traced Karen’s illness back to her miscarriage   They determined that she had been transfused with bad blood, the same blood which had paradoxically saved her.  Karen’s life is in jeopardy now because of a well-meaning blood donor decades prior.  That blood was tainted.

“I felt like typhoid Mary,” Karen told me. She panicked, worrying that she had unwittingly infected her husband and children and everybody else in her life.  She thought she had given the kiss of death to her nearest and dearest.  Thank Goodness that she didn’t and hadn’t.

Karen was given compensation from the government from having received tainted blood.  She said “I could have used the money to make myself comfortable and stop working.”  She considered that option.  Most people would have taken care of themselves.  But that was wrong, “That was blood money,” she said.

STACEY-HOUSE-BLEND

Suffering from debilitating liver disease, Karen used that blood money to buy an apartment for transplant patients and named it Stacey House.  It is across the street from the hospital and belongs to the “Happy Liver Society” which Karen founded.  She could simply have bought a house for herself or her children.  She could have travelled around the world or hired extra care.  But no, she gave that money to the community.  Even though it was owed to her and given to her, she *gave it away* to help others.  In the full throes of liver disease and dying, Karen was worried about the others who were suffering.  Thanks to the Stacey House, patients and their families with limited means have a comfortable home when they come to the city for a transplant.

Karen had been on the transplant list for 4 years, the longest wait to date in BC.  Most patients who need transplants die.  They slowly die. Whilst waiting for someone else to die.

When I met Karen at the Happy Liver Society’s Spring Fling last month, I nearly fell over when she told me that she had gotten her recycled liver only 8 months before.  “That’s amazing!” I gasped in wonderment.  As a liver *donor*, I was certainly not up to organizing a big event 8 months post surgery.  Organizing a gala takes Energy.  (Like a wedding.)  “Oh, I hosted an event 9 days after my transplant surgery,” Karen said, smiling with a soupcon of nonchalance.

Needless to say, Karen is a beacon of light.  I felt almost silly when *she* presented *me* with a Bill Reid print, “Happy Liver Society Gift of Life Award” for being a living donor.  Karen is the working tirelessly, not just at her job and life, but also at making the world a better place for those suffering from sickness and recovering from serious surgery.  I salute Karen: her tenacity, her generosity, her sacrifices and indomitable spirit.  May her noble purpose and positive energy infect us all.

For more information about the Happy Liver society please click below:

http://www.happyliversociety.org/