Karen Hoyt is a blogger who has a story about hepatitis C, cirrhosis, end-stage liver disease, liver cancer, and liver transplantation. This excerpt first appeared on Karen’s I Help C blog.
The wait time for a liver transplant is a story of suffering. Recently, one in our community talked about her suffering on CNN just a few days before her death, at age 39. Erika Zak was a wife and mom who waited on the transplant list for 15 months. After a battle with colon cancer, her health insurance denied a transplant. Once she was covered, the MELD score blocked her way. Sadly, after finally getting The Call, she died during surgery last Thursday. It’s the worst and saddest nightmare we all have with liver disease.
Many news outlets, like The New York Times, and people on social media such as Twitter have called on the health care system and United Network for Organ Sharing (UNOS) to make changes in policy. As a person who also had to wait for my liver transplant, I want to talk about the other side. Yes, illness is devastating, and death is tragic, but we have hope. We know amazing miracles take place every day in transplant medicine.
Wait Time for a Liver Transplant
You all know that I eventually got exception points, at a price. My primary liver cancer, hepatocellular carcinoma, was aggressively treated with chemotherapy that blew away liver tumors, and my liver along with it. Those full screenings every 3 months while listed were exhausting and expensive. We made sure that cancer didn’t spread to other parts of my body. Constant surveillance looked for terminal changes that would’ve removed me from the list.
The strict criteria regarding allocation of organs and tissue is something we all understand very well when we are being placed on a transplant list. It is the most equitable way to insure that there is consistence and justice in organ and tissue sharing.
Many of you have had aggressive microwave ablation therapy. This type of chemo keeps tumors from growing too numerous and/or large to meet UNOS criteria. During my personal tumor growing and shrinking months, I got The Call 2 times as a “back up” for transplant. What few people know is that these organs are considered so valuable, that patients are called to the hospital as back up. In case something happens to the primary recipient during surgery, or surgery prep, the next patient is ready and waiting.
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