Beyond the Labs: Why I Created The Liver Guide
“Medicine can sometimes focus so much on what we can measure that we forget to ask about what is being felt. And patients can leave visits feeling like the most important parts of their experience were left unsaid.”
— Ana Marenco, MD
There is a moment after a diagnosis that stays with people.
It usually starts with a few words that suddenly change everything. Primary Biliary Cholangitis. Primary Sclerosing Cholangitis. Autoimmune Hepatitis. Sometimes the words themselves feel heavy enough. Other times, everything that comes after feels more difficult.
You leave the appointment with questions you did not think to ask. You replay the conversation in your head on the way home. You look at the lab results you do not fully understand. You wonder what this means for your future, your daily life, and the version of yourself you thought you knew.
I hear this often.
As someone training in medicine and working in research focused on autoimmune liver diseases, I spend a lot of time around numbers. Lab values, scans, risk scores, outcomes. I have studied how these diseases progress, how we predict outcomes, and how we improve treatment decisions. That work matters. It helps doctors make better choices and helps patients receive better care.
But over time, I realized that numbers are only part of the story.
I would meet patients whose labs looked stable, but they were exhausted all the time. Not the kind of tired that gets better with rest, but the kind that changes how you move through your day. Others would talk about itching that kept them awake at night, made it hard to focus, and slowly affected every part of life. These symptoms were shaping their world, even if they were not always easy to measure.
A lot of what patients live with does not show up clearly in a chart.
That stayed with me.
Medicine can sometimes focus so much on what we can measure that we forget to ask about what is being felt. And patients can leave visits feeling like the most important parts of their experience were left unsaid.
That is one of the reasons I created the Liver Guide.
I wanted to make something simple that helps patients feel more prepared, more informed, and more seen.
Not a textbook. Not something overwhelming. Just a practical guide.
A place to write down your diagnosis, medications, and symptoms so you do not have to start from the beginning at every appointment. A space to note questions before a visit, because it is easy to forget them once you are sitting in the room. A way to track symptoms like fatigue or itching over time, so you are not relying only on memory when your doctor asks, “How have you been feeling?”
Because small things can change a visit.
Walking in with your questions written down can mean leaving with real answers. Tracking symptoms can help your doctor understand what your last few weeks have actually looked like, not just how you feel in that one moment. And understanding the basics of your condition can make the whole experience less overwhelming.
Patient education matters.
Not because you need to know everything, but because having some context makes it easier to move through care with confidence. Understanding why certain labs matter, why symptoms may not always match test results, or why itching and fatigue are part of the disease helps people feel less lost.
It changes the conversation.
Instead of trying to catch up during a rushed appointment, it becomes easier to ask questions, make decisions, and feel like part of your own care.
This guide also matters to me beyond the clinic.
I am originally from Costa Rica, and I often think about how healthcare looks in different places. Not everyone has long specialist visits or easy access to follow-up care. Sometimes simple, clear tools can make the biggest difference.
At the end of the day, the Liver Guide is about making space for something that already matters.
Your experience.
Not just your lab values, but your daily life. Your experience. Your questions. Your fears. Your understanding of what is happening to your body.
Because living with a liver disease is more than a diagnosis.
And if this guide helps make that journey feel even a little clearer, then it is doing exactly what it was meant to do.
