Friends of the National Liver Waiting List Foundation

06/08/2026

The call came at 10pm on a Friday night.

They told us to book the first flight in the morning.
Not to start driving. Not to come right now.
Just get on the earliest flight and be there by early afternoon.

We lived in one state.
The donor was in another.
The surgery was in a third.

We were dual listed.
At the local hospital we were listed at, the time window was narrow.
At the second hospital, the time window was open wider.

That window exists because of technology that keeps a donor organ viable long enough to give a family time to get there.
It is getting wider every year.

That is progress. That is what we track.

06/07/2026

I was told my MELD score meant I wasn't sick enough.

I was losing ground every day. Struggling to work. Struggling to think clearly. Struggling to be a father and a husband in the ways that mattered.

The number said I was fine.

The number was not the whole story.

In 2025 the medical establishment finally said the same thing officially. Your MELD score alone cannot determine your path to transplant. Your whole situation must now be considered.

I wish that rule had existed when we needed it.
It exists now. Use it.

06/06/2026

Nobody handed us a roadmap.
We made wrong turns.
We lost time we couldn't afford to lose.
This page exists so you don't have to.
We built the roadmap we wish we'd had.

3 people die every day waiting for a liver. If you're on the waitlist — or caring for someone who is — start here.

06/06/2026

Thousands of people are waiting for a liver transplant right now while being told their numbers don't qualify them.

They are declining. They are frightened. They are doing the math at 3am.

The number says they are fine.

We didn't start this because we had extra time.

We started it because we couldn't find anyone who had done it before us.

If you're looking for someone who gets it, you're in the right place.

06/06/2026

Hepatic Encephalopathy will not raise your MELD score.
It will empty your bank account.
It will end careers.
It will frighten your children.
It will follow you into every room of your house.
But on paper, it does not count.
Should it?

06/06/2026

I remember sitting in an exam room being told my numbers didn't qualify me for a transplant. I was losing ground every day and the system was telling me to wait.
My wife didn't accept that. I'm not sure I would have found my way through it without her.
The system is changing. Faster than most people know. I just don't want another family to have to fight the way we did to find that out.
-Ken

06/06/2026

Need more information? https://nationalfriends.org/your_options/

06/05/2026

06/04/2026

With American Liver Foundation – I just got recognized as one of their top fans! 🎉

06/04/2026

Compare Centers. Understand wait times. Get questions for your team. NationalFriends.org