This is a love story about my husband Sam and his liver.
Sam desperately needs a liver transplant and I am desperately in need of your
help.
I hope that after you read our story, you decide to share it with others and
that together, somehow, somewhere, someone will come forward to help us.
The world is a social network where we email, facebook, text, chat and tweet.
We need you to spread the word.
Winston Churchill once said “We make a living by what we get, but we make a
life by what we give…”
My name is Susan (Groberman) Marr and I have been married to an amazing
man named Sam Marr for over twenty years now. We have a beautiful life
together…Sam is a bona fide, talented lawyer and I am a stay at home Mom
who made the choice to forgo my legal career a long time ago for the
incredible opportunity of raising two amazing sons…we have a comfortable
home in a lovely neighborhood and have been blessed with a warm and
supportive network of family and friends. We have everything that really
matters in life except for one thing…
Sam needs a liver. And without a liver Sam will die. Then this amazing man
will be no more, and our amazing life together will cease to exist. And we will
no longer have everything that really matters in life.
Let me first start at the beginning. I met Sam when we were both in our late
20’s at a cottage in the Muskokas during the summer of 1990. There was
something about his voice as he told a story; the way his eyes danced and his
body rocked when he laughed out loud; his soft and gentle character. We
were instantly drawn to one another. I loved spending time with him. And as
our relationship grew, and we began to share more intimate and personal
details of ourselves with the other, I learned that Sam had a serious liver
condition known as Primary Sclerosing Cholangitis or PSC.
Sam was
diagnosed with the disease at the age of 23. He was in law school at the time.
Sam had dreamed of becoming a lawyer since he was 9 years old. He never
let PSC or anything else interrupt his dream. PSC was a progressive disease
he told me. There was no cure for PSC short of a liver transplant someday.
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The doctors could only control its symptoms.
optimistic about the future. And so was I.
Sam remained hopeful and
We got married in 1991. It was a glorious wedding in my hometown of
Montreal. I remember when he first proposed marriage Sam whispered the
words “Grow old along with me, the best is yet to be”. Over the last twenty
years, Sam has uttered these same words to me countless times. I have no
reason to doubt them. He is so handsome and strong and I am his wife and
best friend. When we married, we made vows to one another. We were
ready for our life together. We were so happy and so much in love. Nothing
could stop us.
And for a long time nothing did. We settled into married life. We bought our
first home and I became pregnant with our first child. Darren brought so
much happiness into our lives. Adam followed two and a half years later and
our “cup runneth over”. We were a family unit, celebrating birthdays,
anniversaries and holidays together. We spent time at the park with the boys
and cuddled at home watching movies.
Fast-forward the clock. The boys were growing up. We sold our home in the
City and moved to the suburbs. There was a more relaxed vibe. We made
new friends while keeping in touch with our old ones. Life was beautiful.
Sam’s PSC was a constant in our lives, but never felt like a real presence.
There were some difficult days, but a lot of good ones. Sometimes I even
forgot he was sick….
We were busy with hockey games, music lessons and play dates. We were
your typical family, running between school and extra curricular activities.
Sam and I cherished all of these moments. Sam loved practicing law and his
legal career flourished. He became a partner at his law firm. He loved the law
and spent a lot of time helping people in need. In 2011 he was elected
President of the Toronto Lawyers Association.
We counted our blessings every day. Only Sam’s PSC was getting worse, and
there were many more difficult days now. Sam began to suffer from the
effects of PSC. There were more frequent cholangitis attacks, a common
symptom of PSC. He suffered from chills, fevers and intense fatigue. There
were more medical tests, appointments and procedures with his specialists.
The boys learned from an early age that there were times when Sam simply
couldn’t share or participate in their lives no matter how much he wanted to.
They were tough lessons to learn growing up. They remain tough lessons for
all of us today…
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Sam’s PSC has continued to progress and his health is steadily declining. But
Sam remains steadfast in his resolve. I couldn’t help but log on to this
incredible person. He is the most determined and impressive person I have
ever known.
Sam’s doctors at Toronto General Hospital in Toronto are excellent and
supportive. But they remain brutally honest with us. Sam needs a liver and
without a liver transplant Sam will die. Sam’s condition is monitored
regularly through a series of blood tests. His blood test results have
worsened. The doctors use a formula called The Model for End-Stage Liver
Disease (MELD) to keep track of his condition. The MELD system measures
various blood tests to determine survival. Recently Sam’s Meld scores have
been steadily rising and are getting closer to a MELD score of 20.
With a MELD score of 20, statistically twenty percent of patients with this
score will die in 3 months time. The vast majority of people with this MELD
score will die within 2 years.
At present, there is no cure available for the treatment of PSC. Sam’s only real
chance of survival is a liver transplant. If Sam receives a new liver he will
likely live for a long time. The 5-year survival rate for PSC recipients of a new
liver at Toronto General Hospital is 90%.
In February 2012, we made the decision that it was time for Sam to go on the
deceased donor transplant list. Our lives were about to change forever. We
put our faith in the Trillium Gift of Life Network which is the organization that
administers the transplant list. We are waiting for a liver. There are no
guarantees when Sam might receive a new liver or whether Sam will even
receive a new liver in time.
I remember the day we told Darren and Adam that Sam was listed for
transplant. I remember the day as if it were yesterday. The sun was shining
outside but there was a dark cloud in the room. Darren and Adam stared
straight ahead when we told them the news. They couldn’t look at either Sam
or I. They showed no expression on their faces, none at all. After all, this was
their father. This was the man who had been at their hockey games and who
they had shared their deepest thoughts and secrets with. This was their
father. He was in trouble and they were hurting.
Our family needed a
miracle….
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And this is where our story ends. Or rather this is where our story is just
beginning. Sam needs a liver. And without a liver, Sam will die. Most people
don’t realize that there are two ways that an individual can receive a new
liver. Sam is currently on the transplant list to receive a liver from a deceased
donor. But Ontario and Canada have one of the lowest organ donation rates
in the world. Only 22% of Ontarians have filled out their organ donation
cards. In 2010, 229 Canadians died while on the transplant list waiting for a
new organ. Every three days, an Ontarian on the transplant list dies while
waiting for an organ.
Life is for the living…and one of the amazing truths is that an individual can
step forward as a living donor to save Sam. This is a humanitarian gesture.
An act of kindness or generosity. There is no monetary consideration
involved. A recipient cannot buy a liver. A person can however opt to go
through an operation in which he/she can donate a portion of their liver to a
recipient, and the donor’s liver will regenerate to a full size healthy liver
within six to eight weeks time. It is miraculous! And guess what, the portion
of the liver transplanted into the recipient will also regenerate to a full size
liver.
The risk to the donor is minimal. Toronto General Hospital (TGH), where Sam
is a patient, is one of, if not the best hospital for living donor transplants in
North America. TGH is super vigilant and scrupulous in its assessments and
testing to ensure that the living donor procedure is as safe as possible for the
donor. To date, TGH has successfully completed hundreds of living donor
operations without a donor death.
Sam remains on the deceased donor list waiting for a transplant. A living
donor transplant is the miracle he needs.
Over the years we have learned that being a blood relative does not
necessarily increase the odds that an individual is a match for Sam. The first
step in the process is confirming the individual’s blood type and this is
determined by a simple blood test.
Sam’s blood type is “A” and any individual with a type A or O blood type
(positive or negative) may be a potential donor for Sam. Suitability as a
donor involves further testing and assessment by the Transplant team at the
hospital. It is the team alone and not the recipient or the recipient’s family
who is involved in making the decision as to whether an individual is a
suitable match. It is a careful and vigilant journey…
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ONLY ONE IN SIX PEOPLE WILL BE A MATCH. Only one in six. But I believe
in miracles…
“Grow old along with me, the best is yet to be”…
There are no guarantees on this path…. but life is not about guarantees. It is
about hope and it is about survival.
This is our love story. It is personal story, but one that we wanted to share
with all of you. We are reaching out to that person who has the courage and
strength to donate a part of their liver and save a man’s life. It is the ultimate
act of human kindness.
And kindness, and love, and support and hope are what has anchored our
lives and brought us to this very point. Please help me save the love of my
life. Please help me to save Sam.
For further information on becoming a living donor for Sam Marr, please
contact the Living Donor Transplant Office at Toronto General Hospital at
(416) 340-4800, extension 6581, or email liverdonorforsam@gmail.com
Susan Marr