Living organ donation workup: steps, pros and cons, and ethical considerations

A friend’s simple question—“How does living donation actually work?”—sent me down a careful, humbling rabbit hole. I wanted to understand the entire evaluation, not just the hopeful headlines. What would I actually face if I volunteered? Who protects me? Where does caution trump enthusiasm? The more I read and talked to clinicians, the more I realized the workup isn’t just a stack of tests; it’s a structured process designed to honor donor autonomy, informed consent, and safety, while also being honest about limits. Today I’m capturing what I learned in plain language, mixing diary-like reflections with practical notes you can carry into a first phone call.

The first contact quietly sets the tone

When you reach out to a transplant center (often through an online form or donor line), you’re not committing—yet. You’re asking to be heard. I liked that the first step usually feels low-stakes: a confidential questionnaire, a phone screen, and a promise that I can walk away at any time. Early on, the center will confirm basic things like age, medical history, and which organ is being considered (most commonly a kidney, sometimes part of a liver). They will also explain a role that was new to me: the Independent Living Donor Advocate (ILDA), a person or team charged with representing the donor’s interests alone, separate from the recipient’s needs.

  • High-value takeaway: You can opt out at any step, no explanation required. That choice is protected and should be respected.
  • Expect honest conversations about finances, time off work, and family dynamics as part of screening—not as an afterthought.
  • Different centers evaluate donors a bit differently; the principles are shared, but the details can vary by program.

What the “workup” usually includes behind the scenes

Once you clear the prescreen, the real evaluation unfolds. It’s comprehensive on purpose. The goal isn’t to “greenlight” every generous person; it’s to confirm donation is medically reasonable, psychologically supported, ethically sound, and freely chosen.

  • Education and consent — You’ll receive balanced information about surgery, recovery, and uncertainties. Consent is a process, not a single signature. You should understand alternatives like paired donation (kidney donors who aren’t compatible with their intended recipient can swap with another pair).
  • Compatibility and immunology — Blood typing (ABO), tissue typing (HLA), and crossmatch tests check for antibodies that could cause rejection. If incompatible, paired exchange may still be a path.
  • Medical testing — A history and physical exam; blood and urine tests; infectious disease screening (HIV, HBV, HCV and others); kidney function (including measured GFR for kidney donors); and screening tailored to age/sex (e.g., blood pressure evaluation, diabetes screening, mammogram, Pap test, colonoscopy when appropriate).
  • Imaging — For kidney donors, CT angiography maps arteries/veins and checks anatomy; for liver donors, specialized scans assess volume and vascular/biliary anatomy to ensure enough liver remains for you and enough goes to the recipient.
  • Cardiovascular assessment — EKG, chest imaging, and possibly echocardiogram or stress testing if risks warrant.
  • Psychosocial evaluation — A licensed mental health professional explores motivation, supports, stressors, and risk of pressure or coercion. This isn’t a “gotcha”; it’s a safety net.
  • Independent Living Donor Advocate (ILDA) — Separate meetings that focus on your questions, whether you feel pressured, and whether you understand the non-medical realities (time off work, child/elder care, travel, etc.).
  • Multidisciplinary review — Surgeons, physicians, ethics, anesthesia, social work, and the ILDA weigh in. The committee may say yes, not yet, or no—always with reasons aimed at your welfare.

Something that reassured me: the system builds in follow-up. In the U.S., programs are required to arrange medical follow-up and report donor health information at approximately 6, 12, and 24 months after donation. That mandate exists so donors aren’t forgotten after the surgery glow fades.

Pros I didn’t want to overhype and cons I didn’t want to minimize

On the bright side, living donation can cut wait time, improve timing, and often yields excellent outcomes for recipients. For donors, many describe a deep sense of meaning. But I learned to hold that alongside sober realities:

  • Surgical risks — All surgery carries risks like bleeding, infection, blood clots, anesthesia complications, and unplanned re-operations. For living liver donation, rare but serious complications can occur; kidney donation is major surgery too, even when laparoscopic.
  • Long-term health considerations — Most donors do well, but kidney donors can have a slightly higher risk of hypertension over time, and those who become pregnant later may have a higher risk of certain complications. These risks are generally small but real, and they matter at the individual level.
  • Financial and practical burdens — Hospital bills tied to the donation evaluation and surgery are usually covered by the recipient’s insurance, but non-medical costs (lost wages, travel, lodging, childcare) may not be—unless you access specific programs. Plan for time off work and the logistics of recovery.
  • Emotional dynamics — Even with clear motives, donors can feel pressure, disappointment (if ruled out), or complex feelings if the recipient’s course is bumpy. Support before and after matters.

For me, the key was replacing myths with specifics from trusted sources. I bookmarked a small set of authoritative links and returned to them whenever an anecdote or social post tried to sway me too quickly.

Ethics that actually show up in clinic rooms

I kept thinking ethics would be abstract, but they’re surprisingly practical:

  • Autonomy without pressure — Your “yes” must be free of coercion and fully informed. The ILDA is there to spot subtle pressures and to safeguard your choice to withdraw at any point.
  • Beneficence and non-maleficence — Teams balance helping the recipient with minimizing risk to you. If the equation doesn’t add up, they will advise against donation—even if everyone wants it emotionally.
  • Justice and financial neutrality — In the U.S., payment for the organ is illegal, but reimbursement for certain expenses is allowed through specific programs. The idea is that you shouldn’t be worse off financially for stepping forward.
  • Privacy — Your health disclosures (for example, if an evaluation uncovers a new diagnosis) are your information. Programs should explain who sees what, and how results are handled if you or the recipient’s team needs to know something to stay safe.

Ethics also guide program decisions around paired exchange and non-directed donation. Those pathways can expand access while staying aligned with donor protections—when consent is clear and supports are strong.

A stepwise way I organized the process

Here’s the checklist I built for myself, not as rules but as a way to stay grounded:

  • Step 1 — Start safely: Make an exploratory call or complete the center’s interest form. Ask how to contact the ILDA early.
  • Step 2 — Clarify motives and supports: Write down why you’re considering donation and who will help during recovery. Name your “opt-out” conditions in advance.
  • Step 3 — Gather records: List medications, past surgeries, allergies. Bring recent clinic notes if you have them. Ask what age-appropriate screenings you’ll need.
  • Step 4 — Understand tests: Before labs/imaging, ask what each test is checking for and how results may change the plan. Confirm how infectious disease screening follows CDC and national guidance.
  • Step 5 — Plan the logistics: Map out travel, time off work, and childcare. If eligible, explore expense reimbursement via NLDAC.
  • Step 6 — Second opinions welcome: If you’re unsure after the committee review, it’s acceptable to ask questions, pause, or seek an outside consult.
  • Step 7 — Follow-up matters: Put the 6-, 12-, and 24-month follow-up dates on your calendar. Ask how labs will be ordered if you live far from the center.

Money, time, and the very practical stuff

I didn’t want to gloss over this part. While the evaluation and donation surgery are generally billed to the recipient’s insurance, that doesn’t automatically cover your lost wages, hotel nights, gas, childcare, or elder care. That’s where the National Living Donor Assistance Center (NLDAC) can help eligible donors with reimbursement for certain expenses, including travel and—importantly—lost wages and dependent care. Plan for a recovery period tailored to your organ and job demands, and talk openly with your employer about leave options (some states and employers offer donor-specific leave; otherwise, consider FMLA and disability policies). The ILDA and social worker are superb navigators here.

  • Ask early: What non-medical costs will I face and what can be reimbursed?
  • Get it in writing: Clarify what the recipient’s insurance covers and what it doesn’t.
  • Protect your future self: Keep copies of all your records and reimbursements. Ask how donation might interact with life, disability, and future health insurance underwriting.

Signals that told me to slow down

I made a small list of prompts to tap the brakes without guilt:

  • Pressure—external or internal: If I felt “I must do this or else,” I paused and called the ILDA.
  • Unclear risk explanations: If I couldn’t restate surgical or long-term risks in my own words, I requested another conversation.
  • Logistical holes: If my plan for time off, childcare, or follow-up felt wobbly, I tightened it before moving forward.
  • New health findings: Any new diagnosis from the workup warranted a timeout and, sometimes, a new primary care plan.

What I’m keeping and what I’m letting go

I’m keeping three principles on my desk:

  • Clarity over momentum — The evaluation is designed to slow us down in the best way. Let it.
  • Autonomy with support — A strong yes or a thoughtful no are equally valid outcomes; both deserve care.
  • Follow-through counts — The donation story isn’t done at discharge. Protect the check-ins at 6, 12, and 24 months.

And I’m letting go of the idea that courage equals speed. The bravest move I saw in clinic was someone who chose not to donate after learning more—and was thanked for showing up so fully. That, too, is what the system is meant to protect.

FAQ

1) Will I have to pay for the evaluation or surgery?
Answer: Typically the recipient’s insurance covers the medical costs of evaluation and donation. Non-medical costs (lost wages, travel, lodging, childcare) are often not covered by that insurance, but eligible donors can apply for reimbursement through programs like the National Living Donor Assistance Center. Ask your center’s social worker early about what applies to you.

2) Can I change my mind after I start the evaluation?
Answer: Yes. You may withdraw at any time, and the team should protect your privacy and your decision. The Independent Living Donor Advocate is a good first call if you’re unsure how to proceed.

3) How long does the workup take?
Answer: It varies by center, organ, your schedule, and test results. Some evaluations can cluster into a few intense days; others unfold over weeks. If paired exchange is needed, timing can extend. Your team can sketch a realistic timeline based on your situation.

4) What about infectious disease testing and safety?
Answer: U.S. programs follow national guidance to screen donors and monitor recipients for viruses like HIV, hepatitis B, and hepatitis C. You’ll hear about testing at multiple points and how any positive or unclear result would be handled.

5) What happens after donation?
Answer: Expect routine follow-up with labs and check-ins around the 6-, 12-, and 24-month marks. Many donors also appreciate peer support groups and a dedicated primary care plan that keeps blood pressure, kidney/liver function, and overall wellness on the radar.

Sources & References

This blog is a personal journal and for general information only. It is not a substitute for professional medical advice, diagnosis, or treatment, and it does not create a doctor–patient relationship. Always seek the advice of a licensed clinician for questions about your health. If you may be experiencing an emergency, call your local emergency number immediately (e.g., 911 [US], 119).