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

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