Tuesday, October 23, 2012

When Plans Change.

Hi everyone, 

I know many of you have been waiting anxiously to hear from me or from a member of my family. The past couple of weeks since posting my initial letter has been overwhelming to say the least and has definitely shown me that I am surrounded by an amazing community of people who love me, support me and want more than anything to see me beat this thing.

In my last letter, I think I wro
te that it may have been the hardest thing I've ever written. Well, tonight, as I sit here at the computer, I am again challenged to find just the write words and sentiment.

I received an email tonight from the Toronto Transplant Centre that acknowledged the very hard decision to attempt to save someone's life when there are no facts, no case studies, no basis for telling what the outcome will be. Unfortunately, as a team, they have decided that this risk is too great and that they can not proceed with the transplant as we had hoped.

To say my family and I are devastated is an understatement. I wasn't sure I would be able to write everyone tonight, but the truth is, at the moment I just feel numb.

I don't know how to begin to express my gratitude for those who stepped forward, got their blood tested, answered and submitted their forms. Friends old and new, extended family, strangers. You are truly angels in my mind. Thank you seems insufficient. Without having to go through major surgery, you have given me a great gift - a belief in the goodness of humankind.

I do not know what is next and I wouldn't dare to speculate.

I thank everyone who read my story, shared it, tweeted it, told people about it, sent me a message of encouragement and positivity. You gave me great hope. You give me great hope.

I learned a lot about transplant in this process. I learned that Canadians sadly can't hold their heads too high on this one. Too many people needlessly die waiting for an organ. If in the last couple weeks I have made just one person think about joining the donor registry, well, I will feel good about the life their organs may one day save.

I go to bed with huge sadness in my heart. I am sure it will be there tomorrow too. I suppose there is comfort knowing that a community around the world will share that sadness with me.

To good health.

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.