Monday, October 8, 2012

In Search of a Liver Donor

Dear Friends,

Seven months ago our family received devastating news when our daughter, sister, wife, Mother, Aunty Deb was diagnosed with a highly malignant cancer (Sarcoma) in her 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 Deb’s 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 we were all broken hearted to learn that the chemo was ineffective and that in fact the disease had progressed within her liver. Along with Deb we have reached out to experts across the globe and explored any and all procedures and treatments that could help her. 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 us new hope when they decided to revisit the option of a liver transplant. As we write this, Deb is being evaluated by the transplant team at Toronto General Hospital.

Deb’s tumor is extremely unusual and therefore the transplant team really can't give her any odds. The reality, however, is that a liver transplant is her only real hope to extend her life in any meaningful way.

Because of the very unusual circumstances of Deb’s case, the transplant centre will only perform a live liver donor transplant. She does not qualify for a deceased liver and would probably not make it in any case as the list is extremely long in Canada. Toronto is at the forefront of performing live liver transplants - they pioneered the procedure and probably do the most in NA - so she is definitely in
the right hands. However, this means that we are now asking someone else to take a risk in order to help Deb, a proposition we do not take lightly.

As her family, who loves her as much as you can imagine, it brings us all great sadness and disappointment that none of us medically qualify to do this for her.

Therefore it is with a deep sense of humility and gratitude that we ask you for your consideration. I know many of you may not qualify, and we of course respect each and everyone's decision whether or not to get tested. We do ask however, that whatever you decide, if you could please pass this on to any and everyone you know that might consider being a donor - it could literally save Deb’s life.

Here are the basic criteria and instruction on how to register to donate should you choose to do so:

Her donor must be in premium health, must not be of the age of her parents (i.e. must be between 18 and 60), must not have had cancer or suffer from any serious health ailments, must have type O blood (Debra is O positive) and must not be immediately post partum.

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.

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.

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.

This is a huge decision. We do not want anyone to feel sadness, guilt or otherwise, whether you choose to be assessed or not, whether you qualify or not, no matter what outcome this procedure might have.

We want to thank you just for reading this, for considering what we are asking and for sending this to others.

The Karbys

42 comments:

  1. When would the transplant surgery take place?

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    1. It depends how fast the donor process takes but it could happen someitime in the next 3-8 weeks. Toronto General would be the best source of this information.

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  2. Dear Debra, In the past few months you have been in my thoughts. This email found its way to me as well as many others who know and admire you. I send my best wishes and hopes across the lakes and rivers and trees and mountains to you and your family in Toronto. The donor will be helping a deserving and loved young woman. With many blessings, Lois Woolf

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    1. Thank you Lois. The response has been overwhelming and extremely touching. I feel very blessed to be supported by such an amazing community.

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  3. Hello Debra, I have just received an email message about you from a colleague in Israel as I sit at my desk here in Nottingham in England on a wet and rainy Thursday night on the other side of the world from you. I do not qualify to be a donor, but I guess I just wanted you to know that your search for help is truly global, reaching out to thousands of people across the planet.

    It is clear that the people around you are doing all they can to help you and your family. I know you may not feel lucky right now, but clearly you are surrounded by people who love you dearly who are dedicated to searching the entire world to help you. Now that is truly something very special.

    I wish you well Debra.

    Nick in the UK

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    1. Dear Nick,

      Wow. I loved receiving your message. I sent it on to my parents immediately - the power of the Internet is truly amazing. What did people do 20 years ago? It was not an easy decision for me to 'go public' in my search, and while it feels very surreal, I am truly overwhelmed by the amazing response from around the globe. You're right, lucky may not be the right word, but I do feel incredibly loved and supported. Thank you for your well wishes. It means the world.

      Best,
      Deb

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  4. Deb, I am so sorry to hear this news. My heart breaks for you and your family, especially after all you're already been through. I am 99% sure that my husband and aren't the right blood type, but we are checking. I'll reach out to everyone I know (I live in Toronto now).

    I'm thinking of you and praying a donor comes through.

    Take care,
    Eiko Kawano


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    1. Thanks Eiko. It has definitely been a long and difficult journey. You just never know what life is going to throw at you. I am trying to appreciate all the special moments in between. Thanks for helping by sharing my post. I feel like it will happen for me.
      Keep well.
      Deb

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  5. Shalom,

    I received an email from the Schara Tzedek synagogue. I am the former rabbi of Young Israel of Richmond, now living in Montreal.

    Could you please tell me what, specifically, is the type of sarcoma you have been diagnosed with (primary angiosarcoma, metastatic disease from sarcoma, GIST, etc)?

    It would be easier for me if you could send this information directly to my email address: rabbi.strausberg@gmail.com.

    In the meantime, send me please, as well, your hebrew name as well as that of your mother.

    With blessings of refuah shleima (a complete recovery),

    Yerachmiel Strausberg
    (514) 559-3466

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  6. Hi Deb.,
    This is my third attempt to write you on this site so please bare with me as try again to post.
    We do not know each other, but we do have a mutual friend, (Ewart Aitken), his children go to school with your kids and I work with Ewart.
    I just found out about your situation last night from Ewart. I am so very sorry that you and your family are going through this ordeal.
    Not to get your hopes up, but I wanted to let you know that I have contacted the Living Donor Clinic in Toronto about being a possible donor for you (I had to leave a message as they were closed today). I am the same blood type (O+) as you are and would be honored if my family and I were able to help you and your family. I know the likely hood of being a match is not great, but I just wanted you to know that there are some people out there that trying to help.
    God Bless and stay strong.
    Russell Werner

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    1. Hi Russel,

      I never know exactly what to say to those who have responded that they are taking the first step in the assessment process. Thank you just doesn't seem like enough. I am moved beyond words.

      I have spoken to Toronto General as it seems they haven't 'officially' put me on the list yet. I had a last minute CT scan there on Friday that they need to review. I will be presented at rounds this coming Friday for a final green light at which point the donor assessment will move forward.

      Thank you from the bottom of my heart.
      Deb

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  7. Hello Debra. You can have half of my liver if I test for type O blood which I believe that I have and if I qualify as a donor. Contact your uncle Rafi for details which I forwarded to him this morning. Greg

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    1. Dear Greg,

      As noted above, I am at a loss for words. The support, generosity and willingness to consider this proposition has blown me away. So, thank you. Truly.

      I will connect with my uncle.

      Best,
      Deb

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  8. Hi Debra,

    I really feel for you and your family. I cannot even begin to imagine what you are going through.

    I wanted to let you know that I work with Therapeutic Grade Essential Oils, and have seen a lot of success, for various different illnesses. I have had a lot of success with my own son, which is why I have started consulting for others. I would love to help you. You are welcome to contact me, and I would be happy to guide you. Feel free to email me at juliacsgro@gmail.com.

    Sending you lots of love and encouragement on your journey to recovery.

    Julia

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    1. Hi Julia,

      Thank you for reaching out. I will connect with you through email.

      Deb

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  9. Dear Deb,
    I am not sure if we've met, I am Karen Alko (Bichin)'s sister, Selina Alko. I read your blog entry and am overcome with emotion. I checked my blood type and I am an 0+. I live in NY with my husband and 2 children (around your kid's ages). It wouldn't be simple for me to make trip(s) to Toronto and go through with the surgery/recovery, but I think I would be willing to do it. Would I need to go to Toronto to register? Judging by the responses on this blog it looks like you have some blood type matches already, but I want you to know I am a serious option if you feel like you're running out of options. I hope that makes sense. In the mean time, I'm sending you tons of healing energy.
    ~ Selina (718-768-8133, my email is: selinaalko@gmail.com)

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    1. Selena -

      I am responding on behalf of Deb.

      Thank you so much for your incredibly generous note. I know it means the world and beyond, to Deb. Unfortunately, as of yesterday the team of doctors have decided that the transplant is too risky and is not moving ahead.

      I can't thank you enough for writing and for your generosity of spirit. It's incredible. I know it has given Deb strength and hope.

      All the best,
      Mira (friend of Deb's)

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  10. Dear Debra....please ad me to the list. I haven't had a blood test but will do that...I am in Chemanius, near Nanaimo, not far...if there is anything I can do to help please e-mail. I will pass your message on.

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    1. Hi Nancy,

      I am responding on behalf of Deb.

      Thank you so much for your incredibly generous offer. I know it has meant the world to Deb. It is with great sadness I have to tell you that due to high risk, the transplant will not be moving ahead.

      Thank you again for your note. The goodness of so many people has given Deb so much hope.

      All the best,
      Mira (friend of Deb's)

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  11. hi there, If i"m the right blood type I am willing to do it, I am 18 years old, in great health and from Kamloops B.C. Please contact!

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    1. Hi there,

      I am writing on behalf of Deb to thank you so much for your note and your incredibly generous offer. The kindness of strangers has been more than anyone could have ever imagined.

      The doctors have determined that the transplant will not be moving forward due to risk. Thank you, again for reaching out.

      All the best,
      Mira (Deb's friend)

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  12. I will donate. I have sent in the paperwork to Toronto. I also messaged you on your facebook site. Unfortunately when I spoke to Toronto this morning I was told they don't look at my history until the named recipient is on their list. Do you know more about this? I understand you are needing results very quickly. Please let me know if I can do more to find out if I qualify.
    Rachel mother of 2
    780-619-0606

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    1. Rachel,

      I am a close friend of Deb's writing on her behalf.

      Thank you so much for your email and your incredible willingness to submit an application. The kindness and generosity has been more than anyone, especially Deb, could have imagined.

      The doctors have determined that the transplant is too risky and therefore your application will not be reviewed at this time.

      I can't thank you enough for your email and for giving Deb both hope and a belief in the goodness of others.

      All the best,
      Mira (Deb's friend)

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  13. Hi Deb,
    Have you had any news yet?
    Have you been put on the list?
    I have sent in all the forms needed.
    Stay strong,
    Russell Werner

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    1. This comment has been removed by the author.

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    2. Deb,
      You can reach me @ 604-414-7458 or through my email
      rnrwerner@hotmail.com

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    3. Hi Russell,

      I am writing on behalf of Deb. Thank you for your email and your incredible willingness to help. The transplant will not be moving forward due to risk. Your generosity, and that of so many others, is truly more than anyone could have imagined.

      Thank you -
      Mira (friend of Deb's)

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  14. Deb,

    I just heard about you. I, too, had a rare cancer in my liver and my only hope was a liver transplant. I had my liver transplant Feb 2010 and I'm doing well. I'm so glad a donor became available. Please message me at tisa.perra@yahoo.ca or find me on facebook (Tisa Perra). I would love to chat with you some more.

    Tisa

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    1. Hi Tisa,

      I am writing on behalf of Deb to thank you so much for your note and for sharing your story of hope. The kindness of others has been incredible. The transplant will not be moving forward due to high-risk, but thank you very much for your offer to connect with Deb.

      All the best,
      Mira (Deb's friend)

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  15. Can donors register from the USA? I'm down in Texas, but I'm 23, O+ blood type and healthy. My family has great history of handling surgeries well, and as a mom, and as someone who knows moms that have had cancer, I understand how important your battle is. I would be more than happy to register and be tested, if they don't mind a good 'ole southern Texan liver ;).

    -Sarah

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    1. Sarah,

      I'm writing on behalf of Deb to thank you so much for your message. Your generosity is incredible. Donors can be from the USA, however, unfortunately the doctors have determined the transplant will not proceed due to risk. I can't thank you enough for giving Deb hope, both in this process and in the goodness of others. It is more than anyone could have ever imagined.

      All the best,
      Mira (Deb's friend)

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  16. I will give to you what you need so badly -My blood is o - My body is always been cancer free - My immune system can handle all things -I am in great health -always have been -and I want to help you win your fight - and I will !

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    1. Thanks very much for your message. Your generosity is very much appreciated. Unfortunately, the transplant will not be moving forward. Thank you again for writing and making such a generous offer.

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  17. Hello Deb,
    Since I won't be able to help physically due to my blood type, please know that I will be praying for you and those generous to reach out and help. I have 3 children and I know the joys of raising them and I wish the very same for you and your family.
    Binh

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    1. Binh, thank you so much for your note to Deb. The generosity and kindness of strangers has been incredible and given Deb so much hope. All the best, Mira (friend of Deb's).

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  18. Hello Deb
    I just became aware of your situation. I am willing to donate. I am O+, I am currently 59 & am very healthy. I live in Idaho. I have printed out the health forms, but have not sent them in yet. Are you are still looking for a donor?
    Marie

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    1. Marie, I am writing on behalf of Deb to thank you so much for your incredibly generous offer. The kindness of strangers has blown everyone away. Unfortunately, the transplant will not be proceeding due to high-risk. Thank you again for believing in Deb, giving her hope and being willing to make such a generous offer. Best, Mira (Deb's friend)

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    2. Gosh, I am sooooo sorry. My husband had a sarcoma MPNST & passed away a year ago, so I know how stubborn these can be. PLEASE contact me again @ taxibug@gmail.com if the high-risk situation lessens & they consider the transplant. Even though I am almost 60, I am willing & very healthy!
      Marie

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  19. My name is Kevin Davis. I have been going to the Amazon for 3 years now attempting to clean and restore it. About a year ago I was introduced to a research doctor there who came up with a tea that will grow you a new liver if you need it. He has been working of this for 20 years. One study said it reduced Hep C by 60% in 30 days. None of the 5 herbs are toxic and you can drink as much as you want. The liver cleanse is in the process of getting a patent. Its rather pricey yet I would love to give you some for free. If you are interested please contact me at mrboompa23@earthlink.net.
    Thanks......Kevin

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  20. I am really sorry to know about this, such kind of situations are really frustrating, liver cancer is very dangerous and there are times when the only solution is a transplant.

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  21. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

    cameronvsj(at)gmail.com

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