As some of you may know, seven months ago I
received the devastating news that I had a highly malignant cancer
(Sarcoma) in my liver. The tumor was considered to be aggressive and had
already grown to be too large to be surgically removed. Sarcomas as a
rule are very difficult to treat and generally do not respond well to
That being said it was decided, at the time, that
my best option was to treat it with a high dose of chemo in the hopes
that the tumor could be shrunk and made eligible for resection. After 6
rounds I am brokenhearted to learn that the chemo was ineffective and
that in fact the disease had progressed within my liver. My family and I
have reached out to experts across the globe and explored any and all
procedures and treatments that could help. Unfortunately, the summer was
filled with a lot of bad news, a lot of disappointment and feelings of
despair and desperation.
Recently, the team of doctors in
Toronto have given me new hope when they decided to revisit the option
of a liver transplant. I am currently being evaluated by the
transplant team at Toronto General Hospital. This is no small
undertaking as you can imagine - it is a big operation and it comes with
great risk. The biggest risk to me is that I will be put on auto-immune
suppressants post-surgery for the rest of my life and that with a
compromised immune system, the cancer may return quite aggressively.
Unfortunately due to the extreme uniqueness of the type of tumour that I
have, they really can't give me any odds. Their guess is as good as
anyone's and they (the Toronto transplant team) would be taking this
risk right along with me. The reality however is that this really is my
only real hope to extend my life in any meaningful way, so I have come
to accept this risk for myself.
Due to the very unusual
circumstances of my case, the Transplant Centre will only perform a live
liver donor transplant. I do not qualify for a deceased liver and would
probably not make it in any case as the list is extremely long in
Canada. (As a side note I've learned that Canada has one of the lowest
organ donation % in developed countries.) Toronto is at the forefront of
performing live liver transplants - they pioneered the procedure and
probably do the most in NA, so I am definitely in the right hands.
However, this means that I am now creating risk for someone else, a
proposition I do not take lightly.
I now find myself in the
position where I need to ask someone else to put themselves at risk by
donating a portion of their liver in the hopes that it may save my life.
So here I sit with a heavy heart, struggling with the physical, ethical
and emotional questions such a big 'ask' inherently comes with. And so I
need to remove myself a bit. I need to present the facts. What's
required. Who can qualify. What the risks are. And then I need to say
that the choice is in others hands. It is a huge decision. Unfortunately
my immediate family members do not medically qualify and I know that
this brings them great sadness. I do not want anyone to feel sad, guilty
or otherwise whether you choose to be assessed or not, whether you
qualify or not, no matter what outcome this procedure might have. I have
faith that if this was meant to be, the right match will happen.
So, here are the basics:
My donor must be in premium health, must be between 18 and 60, must not
have had cancer or suffer from any serious health ailments, must have
type O blood (positive or negative).
To consider becoming a
donor, you must register with Toronto General Hospital. They have an
extremely thorough process of working with donors that is very much
removed from me and from the transplant team, to ensure that the
decision is not biased by the needs of the recipient. There is an
extensive health assessment done (on paper) by each volunteer. Should
there be several volunteers, the team will then choose 1 or 2 candidates
that they feel are the best fit. The candidate would need to go through
further assessment inclusive of a CT Scan of their liver for
compatibility and counseling on the risks of the operation and
risk/benefits for the recipient.
The surgery itself is a major
surgery and comes with its own inherent risks to the donor. While
Toronto General has not lost a live donor to date, they will explain to
any volunteer all the risks that come with such an operation. During the
surgery itself, the transplant surgeon (Dr. Ian McGilvray should you
want to google him) would remove half of the donor's liver. The liver is
a remarkable organ in that it will regenerate to 90% of its complete
size within 3 months. The surgery would be in Toronto and would entail
5-7 days in hospital barring no complications and close to 6-8 weeks for
a full recovery. While payment for an organ is illegal, we are
currently investigating the legal parameters regarding coverage of
out-of-pocket expenses and loss of income. We do not want anyone's
decision to cause financial burden for them or their family. The
Transplant Centre here in TO will provide us with more details in the
If after very serious consideration you are inclined to take the next step, you can visit: www.uhn.on.ca/Focus_of_Care/MOT.
Once on the site you click on "Living Donor Donation" and then follow
the instructions under "Becoming a Living Donor". Alternatively, you can
contact the Living Donor Liver Transplant Office at: 416-340-4800 Ext.
6581 and tell them you would like to register for Debra Karby.
It is with a deep sense of humility and gratitude that I ask you for
your consideration. I know many of you may not qualify, and I respect
each and everyone's decision to get tested or not. I do ask however,
that whatever you decide, if you could please ‘share’ this post - it
could mean helping in the most important step of this very difficult