Preparing for a Kidney Transplant: Evaluation, Waitlist, and Living Donors

When your kidneys are failing, a transplant isn’t just a medical procedure-it’s a lifeline. But getting one isn’t as simple as signing up. There’s a long, detailed process before you even get on the waitlist. And if you’re considering a living donor, there’s another layer of planning. This isn’t about fear or overwhelm. It’s about knowing what to expect, what’s required, and how to move forward without getting stuck.

How the Evaluation Process Really Works

The journey starts when your nephrologist says it’s time. Usually, that happens when your eGFR drops below 20 mL/min/1.73m². That’s not a guess-it’s a clear medical signal. Once referred, you’ll be assigned a transplant coordinator who becomes your main point of contact. They don’t just schedule appointments-they help you navigate the whole system.

The evaluation isn’t one big test. It’s a series of 15 to 25 separate visits over weeks or months. You’ll see a nephrologist, a transplant surgeon, a social worker, a psychiatrist, a financial counselor, and often a dietitian and pharmacist. Each one checks a different piece. Medical tests include blood typing, liver and kidney function panels, HIV and hepatitis screening (using the latest fourth-generation tests), and immune system checks like HLA typing and monthly PRA tests. Your heart gets a full workout too: echocardiogram, EKG, chest X-ray, and a stress test to make sure you can handle the surgery. For men over 50, PSA testing is required. Women need mammograms and Pap smears. You’ll need hemoglobin above 10 g/dL, platelets over 100,000/μL, and albumin above 3.5 g/dL. If any of these are off, you’ll need to fix them first.

Psychosocial evaluation is just as important. They don’t ask because they’re judging you. They want to know if you have someone to help you after surgery. Can you get to appointments? Can you afford the $32,000-a-year medication cost? Northwestern Medicine requires proof of at least $3,500 in liquid assets just for the first year’s co-pays. Insurance coverage is critical. Medicare covers 80% of transplant costs, but private insurers vary. Delays often happen because of insurance denials-24.1% of Medicaid patients face this. If your insurer says no to a test, don’t wait. Call your coordinator. Fight it. One patient on Reddit spent 17 appointments over 11 weeks just to finish evaluation. Another got it done in six because their coordinator coordinated everything.

What Gets You Listed-and What Doesn’t

Not everyone who starts the evaluation gets listed. The transplant committee meets weekly to review each case. They look at three things: medical readiness, psychological readiness, and fairness. The top five reasons people don’t make it onto the waitlist? Active cancer (14.2%), severe heart disease (11.8%), uncontrolled infection (9.3%), BMI over 40 (8.7%), and a history of not following medical advice (7.9%).

Here’s what surprises most people: psychosocial issues cause more failures than medical ones. Thirty-two percent of candidates are turned down because of things like lack of support, unstable housing, or inability to manage medications-not because their kidneys are too bad. Centers require you to demonstrate you understand your post-transplant meds. You’ll be asked to show how you’d take your pills daily, what happens if you miss one, and how you’d pay for them. If you can’t answer those questions confidently, you won’t be listed.

Timing matters. Completing evaluation within 90 days of your first referral increases your five-year survival by 11.3%. High-volume centers-those doing over 100 transplants a year-finish evaluations 23% faster than smaller ones. If your center is slow, ask if you can transfer. You have the right to do so. The average wait time for a deceased donor kidney is 3.6 years. But if you complete your evaluation quickly, you’re more likely to get a transplant within two years.

Living Donors: The Game Changer

Living donor transplants make up nearly 40% of all kidney transplants. Why? Because they work better. The one-year graft survival rate is 96.3% for living donor kidneys, compared to 94.1% for deceased donor kidneys. And you don’t have to wait years. A living donor can cut your wait time from years to months.

But finding a donor isn’t easy. It starts with family, friends, coworkers-anyone who’s willing. They go through their own evaluation. Blood type must match or be compatible. They need to be physically healthy, with no history of diabetes, cancer, or kidney disease. Their kidney function must be normal. They’ll have the same heart and liver tests you do. They’ll also meet with a transplant social worker to make sure they’re not being pressured. The evaluation for a living donor used to take 6 to 8 weeks. Now, leading centers like Northwestern Medicine use rapid crossmatch protocols that cut it to 2 to 3 weeks.

There’s also the Kidney Paired Donation Program. If your friend wants to donate but their blood type doesn’t match yours, they can donate to someone else-and you get a kidney from someone else whose donor matches you. In 2023, this program helped 1,872 people get transplants.

Donors don’t get paid. But their medical costs are covered. Some employers offer paid leave. Some states have tax credits. There are nonprofit funds that help with travel and lost wages. You need to ask. Don’t assume it’s all covered.

What Happens After You’re Listed

Once you’re on the waitlist, you’re not done. You’ll get a UNOS ID number. Your status changes based on your medical urgency. If you’re highly sensitized-meaning your body has built up antibodies against common tissue types-you’ll get priority. The 2024 OPTN update now prioritizes candidates with cPRA levels above 98%. That’s a big change. It means people who’ve had multiple transplants or blood transfusions are no longer stuck at the back of the line.

You’ll need to keep in touch. Your coordinator will call if a kidney becomes available. You must be reachable 24/7. You’ll need to be able to get to the hospital within hours. You’ll also need to keep your health stable. If you gain weight, get an infection, or stop taking your meds, you can be temporarily removed from the list.

Why Some People Don’t Make It

The system works, but it’s not perfect. Black patients still wait 28.4% longer than white patients on average. But centers that use structured pathways have cut that gap to just 12.1%. If your center doesn’t track racial disparities, ask them to. You have a right to equitable care.

Other common reasons for delays? Missed appointments (18.3% of delays), insurance denials (24.1% of Medicaid cases), and incomplete paperwork. One patient on Reddit spent $8,200 out of pocket because their insurance didn’t cover a specific test. Keep every receipt. Track everything in a notebook or app. Your coordinator can help you appeal denials.

How to Prepare Right Now

If you’re in the evaluation phase, here’s what to do:

• Get your medical records from the last 5 years-especially dialysis logs if you’ve had them.
• Bring the same support person to every appointment. They’ll remember things you miss.
• Use your patient portal. Check your test results. Don’t wait for a call.
• Call your insurance every week. Ask what’s covered. Ask what’s not.
• Start saving for medications. Even $50 a week adds up.
• Ask your coordinator: “What’s the next step? What do I need to do next week?”

What’s Changing in 2026

The End-Stage Renal Disease Transplant Act is rolling out new financial support. By 2026, CMS expects to cut evaluation abandonment rates by 15-20%. More centers are hiring coordinators. The goal is to complete 90% of evaluations within 120 days by 2027. HIV-positive patients can now receive kidneys from other HIV-positive donors-217 such transplants happened in 2023. That’s a huge leap from zero in 2013.

You’re not alone. Over 102,000 people are on the waitlist right now. Many of them are doing exactly what you’re doing-showing up, asking questions, fighting for their next chance.