Monday, October 8, 2012

In Search of a Liver Donor

Hi everyone, 
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 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 coming week.

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 journey.

With thanks and love.
Deb

10 comments:

  1. Deb...

    I am moved by your story. Over the summer, I lost my baby sister to breast cancer that had spread to many organs, including her liver, and I would have done anything to help her.

    I would think seriously about helping, if I could. I have this strong drive now to save a life, to give meaning to my time here on this planet. But I would not qualify. I had major neurosurgery to remove a huge (benign) pituitary tumor just six months ago. Unfortunately, my pituitary shut down in the process, and the tumor has already returned, necessitating another surgery, perhaps as soon as this winter.

    But your message is getting out, through the power of social media. I saw Tzeporah Berman's tweet (she has 3.600 followers), and my response to 750 friends was retweeted by a friend (Livia Blackburn) who has 14,000 followers.

    I no longer pray. But I hopewith all my heart that you find someone who feels as I do, and who has the healthy body to make yours whole again.

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    1. Richard,

      Thank you so much for responding and for sharing your own story. I am truly amazed at the response from those I know and those I don't. While it was very difficult to post my story through social media, I feel very fortunate that the medium exists. What did people do 20 years ago?

      I wish you luck and good health in your own journey. You just never know what life is going to throw you. I am trying to appreciate all the moments in between.

      Thank you for helping to share my story.
      All the best for your own recovery.
      Deb

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  2. Hi Deb,

    I'm writing from Breakfast Television and we'd like to interview you. Would you please give me a call? 604 872 6122

    Jasmine

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    Replies
    1. Hi Jasmine, Thank you for your email. I'm not sure if you reached Deb or not, but unfortunately the transplant is not moving forward. Thank you for your interest in the story and in helping Deb. Best, Mira (friend of Deb's)

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  3. Hi Deb ,

    I am a candidate and would lve to help. This afternoon I phoned & was patched 2times and ended up in the CT room.unable to register bc the person had no idea what I was talking about. That won't stop me :) ill try again later.

    If there's any other place to contact - please post

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    1. Hi there, I'm writing on behalf of Deb to thank you so much for your willingness to help. I'm not sure if you did reach someone or not, but your offer is incredibly generous. Unfortunately, the transplant is not proceeding due to the very high-risk. Thank you for giving Deb hope and belief in the goodness of others. Best, Mira (friend of Deb's)

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  4. Hi Deb,

    Your email touched my heart. I was diagnosed with cancer at 27. I am now 30, healthy and wish more than anything that I could help you.

    I have you and your family in my thoughts.

    Ashleigh

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    1. Hi Ashleigh, Thank you very much for your kind note. It really means so much and is wonderful to know you are healthy today.

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  5. Hello Deb - I will give you what you want -I want you to have a part of my body that is able and strong enough to save you -My blood is type o - and my immune system is the best a person can have -I have no history of cancer in my family -infact no illnesses of anykind . I am very serious I have never been in any poor health at all and I know my body will save yours -Please if you have any qestions for me please ask them - I have never drank alcohol -so I know how well my body is -its yours if you want it -I will give it to you -Honest ! Please write me back Richard -I will look for your email - please do write me -you wont be sorry if you do !!!

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    Replies
    1. Thank you very much for your note and your generosity. The transplant will not be proceeding at this time, but we really value your willingness to help. It has given Deb immense hope and belief in others. All the best.

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