I’m off the transplant list after 9 years of living with MASH

The email wasn’t unexpected.

Earlier in the week, I had received a call from my transplant coordinator at one of the two hospitals where I’m listed for a transplant. Living with metabolic dysfunction-associated steatohepatitis (MASH) has made many realities possible for me, including the likelihood that I might one day need a new liver. That’s where the scariest part of my journey took a sharp turn.

Nine years ago, I was warned I might have only six months to live without a transplant. Somehow, all these years later, my transplant coordinator reached out to tell me I am now considered “too well” for transplant.

That was how the email began. “Too well for transplant.”

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I startled myself with a heavy laugh that quickly dissolved into a coughing fit. The irony wasn’t lost on me. I was battling a brutal upper respiratory virus with bronchitis while being told I was “too well” for anything. Still, it was funny. More than that, it was freeing.

It tickled me to realize that my life now holds more possibility than limitation. It felt good — really good — to be alive and coughing. After all, coughing means you’re still here, right?

My first instinct was to share the news with my partner. He’s been working long hours lately, but the tiny heart emoji that pinged back said everything. I texted my daughter, who was still at school, and she responded immediately with love and excitement.

Of course, I shared the update on social media. So many friends and family members have been on this journey with me. They’ve supported me with humor, generosity, and heartfelt messages during some of my hardest days. That kind of love carries you further than medicine sometimes.

Looking forward to … knee surgery?

So does this mean I’m cured? No.

As I’ve shared in previous columns, my health has been steadily improving over the past few years. It has now been four years since I’ve had to stay overnight in the hospital for anything liver-related. That alone feels like a small miracle, considering there was a time when hospital visits felt like a revolving door. Not anymore.

My next hospital visit will be for knee surgery. Oddly enough, I’m looking forward to it. Years of osteoarthritis pain have been prolonged — and often intensified — by my liver disease. When my liver doctor finally cleared me for my first knee surgery, I scheduled it immediately, half expecting him to change his mind.

But the numbers don’t lie. That surgery proved my body, and especially my liver, could handle more than I once believed.

I am still living with MASH. But the important part is this: I am living.

I’m making plans now. Real plans. I want to get my passport. I want to start saving for trips to Paris, Seoul, and maybe even the Maldives. Big dreams, yes, but after everything, they feel entirely reasonable.

My first trip, though, will be much closer to home.

After my next knee surgery, I plan to finally explore the park trails just outside my house. I live beside a beautiful city park filled with quiet paths and wildlife. I’ve watched it from afar for years. Now, I’m ready to step into it. Maybe I’ll even ask for binoculars for my birthday next month.

While I sometimes worry that sharing moments like this sounds like a humblebrag, my intention is simple: connection.

We are all on different paths, facing different challenges. If my story can offer even a flicker of hope, then it’s worth telling.

I hope your journey is filled with love, joy, wonder — and above all, good health. I’m grateful you’re walking this road with me.

Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.