Navigating Living Donation, Advocacy and Life After Liver Transplant

Liver cancer survivor Charles Walker speaks with CURE’s Gina Mauro, vice president of content at MJH Life Sciences, about the complex realities of transplant eligibility. In this candid conversation, Walker recounts how that moment shifted his focus to living donation, the emotional process of identifying a potential donor within his family and the profound impact his son’s decision had on both his treatment course and their relationship.

The discussion also explores common misconceptions about living liver donation, the rigorous safeguards in place for donors and Walker’s advocacy work following his transplant. Reflecting on his designation as the American Liver Foundation’s 2026 National Adult Liver Champion, he emphasizes awareness, self-advocacy and informed decision-making as essential tools for patients navigating hepatocellular carcinoma and transplant pathways.

To hear more of Charles Walker’s story, check back to our previous CURE content, here.

Mauro: I definitely want to talk about the MELD score gap. Many patients are really surprised to learn that they can be "too healthy" for the deceased donor list but are too sick to live a normal life. This is often due to a low Model for End-Stage Liver Disease (MELD) score. Can you explain what that realization was like for you, and how the topic of living donation was brought up with your family?

Walker: Yeah, so I became eligible to go on the UNOS list, but I was relatively healthy. I felt good, and I understand that the organs available should go to the sickest people because they are the ones in the most dire need. However, I figured that I wasn't really going to end up being a recipient from the list and that my best option was going to be a living donor. I went through all of this in my mind; I kept a journal, so I actually wrote it down and thought about who the best person would be to donate their liver. I kept going back to my oldest son, Kyle, because we have pretty much the same body shape.

Blood type wasn't an issue because I have the universal type. He was extremely healthy; he had actually stopped drinking and went to rehab a year before, so there weren't concerns with that. It just kept coming back to Kyle. My sister Elizabeth did go through the testing and all of that; she was the first person to go through it, but we weren't a match. She was devastated by that; she was crying on the phone saying, 'I’m so sorry.' I told her, 'Liz, you don’t have to be sorry. You tried, and that’s all I care about—that you actually made the effort.'

Soon after that, Kyle decided to do it. It had to sink in for him; he had to understand it. Once that happened (it took about a month) he did his research on what this was going to entail for him. After he realized what it meant to me, he said, 'I’m all in.'"

Mauro: I can’t imagine how powerful that must have been for both of you. Can you talk a little bit about what that process was like? Obviously, it has impacted your treatment journey and your cancer journey tremendously, but how has it also changed your relationship with him?

Walker: Well, we always had a good relationship. He’s 36 now, so obviously he has his own life. But from my perspective, he’s my hero. What else could I say? For somebody to do something like that, even if it is your own kid, I have to be honest, I did have an expectation at first, wondering what was taking him so long. That was selfish on my part because I’ve never been in that position.

When somebody says, 'I want your liver,' you have to let it settle before you make that decision. Not everybody is going to do it, let's be honest. Whether it’s your father or not, it is something you’ve never done before, and you're unaware of what your life is going to be like after that. It was a giant leap of faith for him, and I’m so grateful.

Mauro: I think it’s really special that you call him your hero because he calls you his idol. It is definitely a very special relationship. Thank you, Charles. I want to talk about demystifying living donation. I think this goes hand in hand with what we just spoke about regarding research and being informed. There can be a lot of fear or mystery surrounding it. Can you talk about some of the biggest myths surrounding being a donor or recipient that you’d like to debunk for the liver cancer community?

Walker: Well, as I started to say before, the probability is in the high 90s that the donor will be fine during the transplant. Basically, you’re not going to die on the operating table. That sounds extreme, but it's probably the first thing in most people’s minds: 'Am I going to survive this?' There’s a very high probability that you are going to survive. You do have to change your diet and monitor your health.

They monitor my son — I think he goes every six months for a scan — because they are as concerned about the donor as they are about the recipient. It’s not a situation of 'walk in, here’s my liver, and see you later.' They are very on top of the donor’s health as well, so you will be cared for very well throughout the whole process.

Mauro: You also received very exciting, big recognition recently. The American Liver Foundation has named you the 2026 National Adult Liver Champion. Congratulations! I’d love to hear your primary mission for the upcoming walk season. Is there a specific message you would like to send to the 9,300 Americans currently waiting on the transplant list?

Walker: The whole point of all of this is to raise awareness. It sounds so odd, but the average person does not know that the liver can regenerate. The average person knows you can live with one kidney, but we have to get the word out that the liver is the same way. By doing that, more people might be willing to step up and potentially save someone’s life.

As soon as this happened — as soon as I got the transplant — my goal was to pay it forward. I was blessed; I was one of the fortunate ones who got a second chance, and I have to do something to pay that back. I’m going to continue to do the walk, and I’m contemplating going out for the Transplant Games in Colorado, depending on my health. It’s all meant to promote something that’s so important. I read recently that liver disease has increased so much in the last decade that people have to start paying attention to it.

A lot of it comes down to lifestyle, and we need to realize it can cause major problems down the road. Awareness is really the key.

Mauro: Now I’d like to hear your advice for a patient who just received their HCC diagnosis and is feeling that same state of disbelief you felt. What is one thing you would tell them that is essential for their survival, both physically and emotionally?

Walker: I think you have to let it marinate in your mind for a little bit. It’s life-changing when you hear those words, and you have to come to grips with it. Everybody is different; it’s like grieving, and there are no set rules for that. You just have to reach the realization of, 'All right, this is what it is, and I’ve got to fight it.' That’s the mental side.

Physically, you have to listen to your doctors and do your research. You have to make decisions and sometimes take a leap of faith, like I did with switching my care. I asked for my wife’s and sister’s opinions, but I told both of them that, at the end of the day, this was my decision. I wasn’t going to ask them to make it for me. And they were fine with that because they didn't want the weight of it if something went wrong.

Again, I keep harping on this: be your own advocate. That’s pretty much it.

Mauro: I am so appreciative of the time you took today to sit down and share your story. Is there anything else you would like to add about your journey, your current treatment, your quality of life, or anything else for the community?

Walker: I could shed some light on where I’m at now. I still have some bile duct issues, which requires me to go in for an endoscopy-type procedure. There’s a possibility that if this doesn’t clear up the problem, I may have to have another surgery. That’s always frightening because, believe it or not, tomorrow is my one-year 'liverversary.'

Mauro: That’s exciting! It’s like a birthday?

Walker: Absolutely. But thinking back, I really don't want to have to go through another procedure. Then again, you don't really have a choice if you want to live. You do it and you give it your best shot all over again. I’m trying to stay positive that I won’t need that second operation, but I’m preparing mentally in the event that I do.

My advice is: prepare yourself for the worst, but think positively. Hope, pray, and expect the best. That’s what I would say."

Mauro: That’s perfect. Thank you so much, Charles, and happy liverversary!

Transcript has been edited for clarity and conciseness.

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