Getting ready for a kidney transplant isn’t just about waiting for a call. It’s a detailed, sometimes overwhelming process that starts long before you’re added to the waitlist. If you’re considering a transplant, you need to understand the steps: the medical and emotional evaluation, how the waitlist actually works, and what it means to have a living donor involved. This isn’t a quick checklist. It’s a journey that can take months - and the sooner you start, the better your chances.
How the Transplant Evaluation Works
The evaluation is your first real step toward a transplant. It’s not a single appointment. It’s a series of tests, interviews, and paperwork spread over weeks or even months. Most centers start this when your kidney function drops below an eGFR of 20. That’s when your nephrologist refers you to a transplant center. You’ll begin with an intake coordinator who asks basic questions and gives you forms to fill out. You have 14 days to complete them. Delaying this step can slow everything down. After that, you’ll meet with a transplant team that includes a nephrologist, surgeon, social worker, psychiatrist, and coordinator. Each has a job: the doctor checks your health, the social worker checks your support system, and the psychiatrist makes sure you understand what comes after surgery. You’ll need blood tests for your type, liver and kidney function, and infections like HIV and hepatitis. You’ll get a heart check - an echocardiogram, EKG, and stress test - because your heart has to handle the surgery and lifelong meds. Women over 40 need mammograms and Pap smears. Men over 50 need a PSA test. Labs must show your 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 it before moving forward. Psychosocial evaluation is just as important as the medical tests. You’ll be asked about your living situation, transportation, finances, and whether you have someone who can help you after surgery. One center requires proof you have at least $3,500 in savings for your first year of anti-rejection drugs. If you don’t, they’ll help you find resources - but you can’t be listed until this is resolved.What Happens After the Evaluation?
Once all your tests are done, your case goes to a transplant selection committee. They meet weekly. You’ll get a decision within 72 hours. They don’t just look at your health. They look at your ability to follow through. Did you miss appointments? Do you understand you’ll need to take 10+ pills a day for the rest of your life? Do you know what happens if you skip a dose? About 32% of people don’t get listed because of psychosocial reasons - not medical ones. That’s more than heart disease, cancer, or obesity. It’s often about lack of support, unstable housing, or inability to manage complex care. If you’re denied, it’s not the end. Many people come back after getting counseling, finding a caregiver, or fixing their finances. Insurance approval is another major hurdle. Medicare covers 80% of transplant costs, but you still need to pay your deductible - often around $4,550 a year. Private insurance covers 70-90%, but some deny specific tests. Medicaid patients wait 37 days longer on average just to get approved. If your insurance delays you, call your transplant coordinator. They’ve handled this before. They can help you appeal or find financial aid.The Waitlist: How It Really Works
If you’re approved, you’re added to the national waitlist. As of early 2024, over 102,000 people in the U.S. are waiting for a kidney. The average wait time? 3.6 years. That’s a long time. But your wait isn’t the same as everyone else’s. The system prioritizes based on medical need and compatibility. Your blood type matters - O types wait longer because they can only get O kidneys. Your tissue type matters too. If you have high antibodies (called a high cPRA), you’re harder to match. But under the 2024 update, you get priority if your cPRA is above 98%. That’s a big change. Your location matters. Some areas have more donors than others. You can register at multiple centers to improve your odds. But you can’t just pick any center - you need to live close enough to get there quickly if a kidney becomes available. The worst thing you can do is go silent. If you miss appointments, don’t answer calls, or change your phone number, you’ll be moved to the bottom of the list. Keep your contact info updated. Check your patient portal daily. The transplant team is juggling 45-60 patients. You need to be proactive.
Living Donors: Faster, Better, Safer
A kidney from a living donor is the best outcome. Graft survival rates are 96.3% after one year - higher than from deceased donors. And you don’t wait years. If you have a willing donor, the whole process can be done in 6 to 12 weeks. The donor goes through their own evaluation. It’s just as strict. They need to be healthy, have normal kidney function, and be free of cancer, diabetes, or uncontrolled high blood pressure. They can’t be paid - it’s illegal. But all their medical costs are covered by your insurance. There’s a new option: kidney paired donation. If your friend or family member wants to donate but isn’t a match, they can give to someone else - and you get a kidney from someone else’s donor. In 2023, this program helped 1,872 people get transplants. Some centers now use rapid crossmatch testing. That cuts donor evaluation from 6-8 weeks down to 2-3. If you have someone in mind, ask if your center offers this. It could save you months.What Can Go Wrong - And How to Avoid It
Many people get close to being listed - then get stuck. Here’s why:- Missed appointments: 18.3% of delays come from this. Block your calendar. Set reminders. Bring a friend.
- Insurance denials: 24.1% of Medicaid patients face this. Don’t wait - fight it early. Your coordinator can help.
- Incomplete records: Bring 5 years of medical history. Include dialysis logs if you’ve had them.
- Financial panic: Anti-rejection drugs cost $32,000 a year. Plan now. Apply for aid through the American Kidney Fund.
- Emotional burnout: 63% of patients feel anxious during evaluation. Talk to someone. Join a support group. Reddit’s r/kidneytransplant has real stories.
What You Can Do Right Now
You don’t need to wait for your doctor to refer you. If you’re on dialysis or your eGFR is below 30, start asking questions now. Call a transplant center. Ask for their evaluation checklist. Ask how long it usually takes. Ask if they offer rapid donor testing. Gather your records. Write down your medications. List everyone who could help you after surgery - even if they live far away. Call your insurance and ask what’s covered. Save what you can. The biggest mistake? Waiting. Patients who finish evaluation in 90 days are 22.7% more likely to get a transplant within two years. That’s not a small edge. That’s life-changing.What Comes After
If you get a kidney, the hard work isn’t over. You’ll take immunosuppressants every day. You’ll need blood tests monthly. You’ll watch for signs of rejection: fever, swelling, pain, or reduced urine output. But the payoff? Most people go back to work, travel, play with their grandkids - live like they did before kidney disease. Living donor transplants give you the best shot. But even if you’re on the deceased donor list, don’t give up. Stay engaged. Stay informed. Stay ready.Can I be listed for a transplant if I have HIV?
Yes. Since the HOPE Act passed in 2013, people with HIV can receive kidneys from other HIV-positive donors. In 2023, 217 such transplants were performed - up from zero in 2013. You still need to be stable on antiviral meds and have no other major health issues, but HIV alone no longer disqualifies you.
How long does the entire transplant evaluation take?
It usually takes 12 to 16 weeks for a deceased donor candidate, and 6 to 12 weeks if you have a living donor. High-volume centers complete evaluations 23% faster. The key is staying on top of appointments and paperwork. Delays often happen because patients miss tests or insurance takes too long to approve.
What if I can’t afford the post-transplant medications?
You don’t have to pay $32,000 a year out of pocket. Medicare covers 80% of drug costs after transplant, and many states offer supplemental programs. The American Kidney Fund and other nonprofits help with copays. Transplant centers have financial counselors who help you apply. Don’t skip evaluation because you’re scared of the cost - help is available.
Can I be on the waitlist at more than one center?
Yes. You can register at multiple transplant centers, especially if you live near state borders or in an area with long wait times. Each center has its own list, so being on more than one increases your chances of getting a match faster. But you must meet each center’s eligibility rules and be able to travel to them quickly if called.
Why do Black patients wait longer for transplants?
Historically, Black patients faced longer evaluation times due to systemic delays in referrals, insurance issues, and less access to high-volume centers. In 2024, the gap was still 28.4% longer on average. But centers using standardized evaluation pathways have cut that gap to 12.1%. If you’re Black and waiting, ask your doctor about centers with proven equity programs - they’re out there.
Next Steps: What to Do Today
If you’re thinking about a transplant, here’s what to do right now:- Call your nephrologist and ask for a referral to a transplant center.
- Write down your medical history - medications, surgeries, hospital stays.
- Ask your family and friends if they’d consider being tested as a living donor.
- Call your insurance company and ask what’s covered for transplant evaluation and post-op meds.
- Find your nearest transplant center and request their evaluation checklist.
