In search of a live liver donor

DEBRA KARBY

Debra Karby, 37, grew up in Vancouver, attending Talmud Torah and Camp Hatikvah, having her bat mitzvah at Congregation Beth Israel and studying at Hebrew University in Jerusalem in her third year. She has been married to Adam Rootman for 11 years, and they have two sons, Tobyn, 7, and Sacha, 4.5, who both went to day care at the Jewish Community Centre of Greater Vancouver; Sacha is still there, so the JCCGV is very much a part of the family’s life. The following article is reprinted with permission from Karby’s Facebook page.

This is the most difficult status update I’ve ever had to write. (I apologize for the length!) 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 chemotherapy.

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 six rounds, I am brokenhearted to learn that the chemo was ineffective and that, in fact, the disease has 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 gave 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 autoimmune 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 tumor 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 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 percentages in developed countries.) Toronto is at the forefront of performing live liver transplants – they pioneered the procedure and probably do the most in North America, 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 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 choose one or two 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 risks/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 percent of its complete size within three months. The surgery would be in Toronto and would entail five to seven days in hospital barring no complications and close to six to eight 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 in Toronto will provide us with more details in the coming weeks.

If, after very serious consideration, you are inclined to take the next step, you can visit uhn.on.ca/Focus_of_Care/MOT. Once on the site, 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 journey.

With thanks and love.

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