Wait Time for a Liver Transplant

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.

UNOS Exception Points Facts

The 36,527 organ transplants performed in the United States in 2018 set an annual record for the 6thstraight year.

A record numbers of organ donors have made it possible for thousands of life saving surgeries to be performed.

UNOS represents different roles and expertise, who work together every day to strengthen the system through continuous improvement and innovation.

The gap between being listed, and receiving a transplant, have greatly diminished in the last five years.

UNOS brings together experts in surgery, health care, data science, technology, and policy.

They work hard to make the organ matching system function as efficiently as possible.

The wait time for a liver transplant, or any transplant depends on each individual location.

The Gift of Life

I’m thankful to be alive, and advocating for anyone with liver disease. I have rallied for patient support in all areas of medical, emotional, spiritual, and psycho-social health. I firmly believe that our liver disease, and our transplant community, are made up of people who care deeply about patients. This week we all mourn the loss of Erika Zak. We also mourn the loss of 2 other people who passed quietly, their stories told only behind the pages of private forums.

In my heart and mind, the real story of Erika is about organ donation awareness. With more people listed, less people die. I hope everyone moved by this story chooses to donate life. It is indeed the gift of life. Rest in peace dear Erika. We send our love and prayers to Scott and Loie. I join many others who mourn the tragic loss of your beautiful young life.

karen hoyt wait for a liver transplant erika

For more information about UNOS policy

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10 thoughts on “Wait Time for a Liver Transplant”

    1. Thank you for taking the time to post a comment. All of our sentiments are heartfelt, whether it’s words, prayers, thoughts, or sadness.

      Thanks also to the donor family who saved lives that day. So sorry that Erika’s transplant did not end well. xoxo Karen

  1. Lorrinda Gray-Davis

    Karen,

    Very well said. Transplants only come to the forefront unless you’re waiting or you know someone waiting for the life saving surgery.
    I find I am always looking for ways to advocate about organ donation. I love following you’re blog and information and I thank you for all you do.

    1. What a blessing you are right now. I’ll never forget logging on, waaaaay before I knew that a transplant would be needed, or even possible. It’s good to see someone find the info useful and supportive.

      Thanks for all of your advocacy work too! I love our new shirts from LifeShare Oklahoma. I love you too.
      xoxo Karen

  2. I did not realize that I could still donate my organs even though I have Hepatitis c. That is really good to know Thank you, and Thank you for all that you do for all of us that are in “the dark”, like me. You are a Gem!

    1. Aw. You’re sweet, and good words are like honey on the honeycomb.

      YES! When I was getting toward the end, and it didn’t look like a healthy liver was available, I was asked if I wanted an HIV or HCV liver and I told them YES! You can always treat for Hep C, and with HIV, I could have a few more years, right?

      YOU are a gem. Thanks for the loving support. xoxo Karen

  3. Thankyou so much for your words of everything you talk to us about. I lived with hep c for years…did treatment like 3 or 4 times…nasty stuff and never worked. Harvoni worked. Been 4th stage no problems for 5 years. Eat healthy.
    Pray..mri and ULTA sound every year.

    1. What an uplifting end story you have. So many did multiple treatments. Here you are still taking care of yourself. It all sounds so scary, but then we find ourselves living through it – one day at a time.

      I hope everyone reading your comments hears the message you share: “Been 4th stage no problems for 5 years. Eat healthy.
      Pray..mri and ULTA sound every year.”

      Thank you SO much for sharing. You’re an inspiration. xoxo Karen

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