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Friends of the National Liver Waiting List

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Newsletter

A calm, plain-language digest for patients & caregivers. Not medical advice. Opt-in cadence, practical links, and “what you’re allowed to do.”

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Today’s Brief: If you’re exhausted, pick one action: write down your questions, or ask about a second evaluation at another transplant center. Information is allowed.
OPTIONS PATIENTS

What you are allowed to do (and many people weren’t told)

You can seek evaluation at more than one transplant center, request a second opinion, and transfer care to another UNOS/OPTN-approved program. Exploring doesn’t “betray” your current team — it can be life advocacy.

Gentle rule: no pressure. Just information.

DATA UNOS/OPTN

Where to see national waiting list statistics

UNOS publishes an official data portal for organ donation and transplant statistics, and SRTR/OPTN publish annual data reports. A federal resource (organdonor.gov) summarizes key national figures and notes daily deaths while waiting across organs.

Links: UNOS Data · OPTN/SRTR Annual Report · organdonor.gov stats

TIMELINES CENTERS

Programs can differ — including timelines

Programs vary in listing practices, evaluation flow, and local organ availability. Some centers publicly report shorter median waiting times after listing (example: Intermountain Health’s published statement of a 22-day median wait time in a 2024 news release).

Link: Intermountain Health (median 22 days)

TECH PRESERVATION

Why preservation technology matters (plain language)

Some devices perfuse donor livers at near-normal temperature, which can extend preservation time and potentially increase scheduling flexibility. The FDA documentation for OrganOx metra describes perfusion of donor livers for up to 24 hours.

Link: FDA: OrganOx metra IFU

Caregiver corner

Your job isn’t to coerce. Your job is to hold information, reduce burden, and support what the patient chooses. When energy is low, you can help by keeping a “questions list” and a “documents list.”

  • Questions to ask: “Can we pursue evaluation at another center?” “What’s the next listing milestone?”
  • Documents to gather: labs, imaging reports, med lists, prior consult notes.
  • Support script: “No pressure. Just information. We stay in control.”

Sources (links)

This newsletter is informational only and does not provide medical advice.