Questions to Ask a Kidney Transplant Doctor
Written for anyone with failing kidneys who has an evaluation booked at a transplant center, and for whoever is going along to listen. The questions follow the order the process takes: getting approved, waiting on the list, donors, the center and the operation, the anti-rejection medicines, then costs and the years after. A transplant nephrologist, a surgeon and a coordinator each answer a different part, so mark which ones go to whom.
The questions
Each question, and why to ask it
Eligibility and testing
From what you have seen so far, is a transplant a realistic option for me?
Why ask it
Nobody can promise an answer before the testing is done, but the doctor can usually say whether anything in your file already looks like a problem. Hearing a concern on day one gives you months to work on it instead of learning about it from the committee's letter.
How would a transplant compare with dialysis for someone my age and in my health?
Why ask it
The usual case for a transplant is a freer week and, on average, more years than dialysis, in exchange for an operation and daily medicine that lowers your immunity. Averages hide a lot, so have the doctor say whether they hold at your age and with your other conditions, and what staying on dialysis would look like if you chose it.
What tests and appointments make up the evaluation, and how long does it usually take from today to a decision?
Why ask it
Ask for the list in writing, in the order things happen. How long it takes mostly comes down to how quickly tests get booked and results get back to the center, so find out which parts you can speed up by scheduling them yourself.
Is there anything about my health right now that I would need to change before you could list me?
Why ask it
Weight, smoking, heart findings, an untreated infection and dental problems are the kind of thing centers raise, and each center sets its own limits. Get the target as a number or a date where there is one, and find out who can help you reach it.
Can I be transplanted before I ever start dialysis, and what would have to happen for that to work?
Why ask it
Getting a kidney ahead of dialysis tends to depend on timing and, often, on having a living donor ready. The doctor can tell you how your kidney function is tracking against the point where you could be listed, which shows how soon the donor conversation needs to start. If you are on dialysis already, ask how those months count toward your wait.
Could the disease that damaged my kidneys come back in the new one?
Why ask it
Some kidney diseases can return in a transplanted kidney and others cannot, so the answer depends on your diagnosis, and on whether anyone has pinned yours down. If it is one that can recur, the follow-ups are how often the team has seen it, how they watch for it and whether it changes which donor they would prefer.
Which of the tests can I have done near home, and which have to be done here?
Why ask it
This matters most if the center is hours away or you are tied to a dialysis schedule. When a local test is allowed, check exactly how the result has to reach the coordinator, because a report sitting in another hospital's system holds up the whole file.
What do you need from the person who will look after me, and is having one a condition of being listed?
Why ask it
Many programs want a named support person and will want to talk to them, though what they require differs. If you live alone or your helper works full time, say so now: the social worker has usually seen that arrangement before and knows what the center will accept.
Who makes the final decision about listing me, and how and when will I be told?
Why ask it
The doctor in front of you is usually one voice on a selection committee. Find out when your case is likely to go to it, whether the answer comes by phone or by letter, and who to call if the date passes with no word.
If the committee says no or not yet, will I get the reasons in writing, and can I be evaluated somewhere else?
Why ask it
A 'not yet' with a list attached is something you can work on, so ask for the list. Centers do not all draw their lines in the same place, and a second evaluation is easier if you already know how to have your results sent on.
The waiting list
Once I am approved, when does my waiting time start counting?
Why ask it
The start of the clock is set by national or regional rules, and in some systems time already spent on dialysis is counted. Have the coordinator tell you your own start date and how it was worked out, because the wait estimates you hear later are measured from it.
How long do people with my blood type and antibody levels usually wait at this center?
Why ask it
A general average is less use than a figure for people like you, since blood type and how sensitized your immune system is can move the wait a great deal. Treat any figure as a range, and ask what would make yours shorter or longer.
What is the difference between being active and on hold on the list, and what would put me on hold?
Why ask it
People are sometimes paused for an infection, a hospital stay, a missing test or a lapse in coverage, and may not realize they cannot receive offers during that time. Three things to pin down: how you would be told, whether time keeps counting while you are paused, and what it takes to be switched back.
What do I have to keep doing while I wait so that I stay ready for an offer?
Why ask it
The answer is usually a list: blood samples sent in for matching on a schedule, heart or cancer screening repeated at set intervals, a review visit every so often. Put the dates in a calendar, since a sample that is out of date can be the reason an offer goes to the next person.
Would being listed at more than one center help in my case, and does this center allow it?
Why ask it
Whether a second listing is possible, and whether it shortens anything, depends on how organs are shared where you live. If the doctor says it could help, ask which tests the other center would accept from this evaluation and what the extra travel would cost you.
How will I get the call, how quickly do I have to answer, and how soon do I need to be at the hospital?
Why ask it
Offers come at any hour and the team can only wait so long before moving on. Give them every number that might reach you, including a relative's, and work out the trip in advance: who drives, what happens in bad weather, who takes the children or the dog.
Some kidneys come with a known drawback, such as an older donor or a longer time in storage. Would you offer me those, and how would I decide?
Why ask it
Centers often ask ahead of time which kinds of offer you are willing to hear about, and saying yes to more can mean a shorter wait. Have the doctor explain what you would be trading in your own case, and settle it now, since the phone call will not leave long to think.
What happens if I am called in and the transplant does not go ahead?
Why ask it
It happens: the kidney turns out to be unsuitable, the final match test comes back wrong, or you were called as the backup for someone else. Knowing that beforehand makes the drive home easier, and you can check whether a false start changes anything about your next offer.
If my health changes while I am waiting, who do I tell, and what kinds of change matter?
Why ask it
A new diagnosis, a hospital admission, a blood transfusion or a big change in weight can all affect whether an offer would be safe for you. Get one name and number for these updates, and have your dialysis unit or kidney doctor copy the center on anything major.
Donors
For someone like me, how do the results of a living donor kidney compare with a kidney from a deceased donor?
Why ask it
A living donor transplant can be booked for a date instead of waited for, and centers generally report that those kidneys last longer. Get this center's own figures for both kinds, then ask what the gap would mean at your age and with the wait you have been quoted.
If someone wants to be tested as my donor, what do they do first, and who do they contact?
Why ask it
The donor usually has a separate team and makes the first call themselves, so leave with the exact number or web form to pass on. Check whether several volunteers can be tested at once or only one at a time. Expect to be told very little about how their testing goes: their medical information belongs to them.
What if my donor is willing but is not a match for me?
Why ask it
Find out whether the center takes part in paired exchange, where two or more mismatched pairs swap donors, and whether there are other routes for an incompatible pair. A willing donor who cannot give to you directly may still be how you get a kidney.
What are the risks to the person who donates, during the surgery and over the rest of their life?
Why ask it
Someone will ask you this at the kitchen table, and you will want to answer honestly. The donor's own team gives them the full picture, but hearing the outline yourself, including how donors are followed afterward, lets you talk about it without overselling or scaring anyone off.
Who pays for my donor's testing, surgery, travel and time off work?
Why ask it
The split between your coverage, the donor's and any assistance program depends on the country and the plan, and lost wages and travel are the usual gaps. Have the financial coordinator spell it out so that nobody offers a kidney without knowing what it could cost them.
What would rule someone out as a donor, and is there an age limit?
Why ask it
People often cross themselves off for reasons the center would not, like being past a certain age or having a different blood type. With the center's real criteria in hand, you can tell the people around you to let the donor team decide.
I do not know how to ask anyone for a kidney. Does the center help with that?
Why ask it
Many programs have a class, a living donor coordinator or printed material for exactly this, and some suggest a friend or relative do the telling for you. The usual advice is to share your situation and where the information is, and to leave the yes or no unasked.
Can a donor change their mind, and how is that handled?
Why ask it
Most programs give the donor a private way to step back at any point without the reason being passed on to you. Tell possible donors that at the start, since it takes the pressure off agreeing to be tested.
Will I be told anything about a deceased donor, and can I write to their family afterward?
Why ask it
What is shared, and whether letters are passed on, is decided by the organ donation organization where you live, and both sides usually stay anonymous unless both agree otherwise. The coordinator or social worker can explain how it is done there. Nobody expects a letter in the first weeks, or at all.
The center and the surgery
How many kidney transplants does this center do in a year, and how many of the patients are like me?
Why ask it
'Like me' is the part to press on: your age, a second transplant, diabetes, high antibody levels or a body size the surgeon considers a challenge. A center that often takes on your kind of case will answer with detail.
What are this center's results one year and several years after transplant, and where can I check them myself?
Why ask it
You are after two figures, how many patients are alive and how many kidneys are still working, because they are not the same. Some countries publish each center's results in a public registry, so ask whether one covers this program and how to read it. A center that takes harder cases can look worse on paper.
Who will do my operation, and which doctors will I see in the weeks after it?
Why ask it
With a deceased donor kidney the surgeon is often whoever is on call that night, so you may not be able to pick. What you can learn is how many surgeons are on the team, whether trainees operate under supervision, and when your care passes from the surgeon to the transplant nephrologist.
Can you describe the operation: how long it takes, where the new kidney goes and what happens to my own kidneys?
Why ask it
It surprises many people that their own kidneys are commonly left where they are, so ask whether that applies to you and why. Having the surgeon draw it also shows you where the scar and the soreness will be.
What are the main risks of the surgery for me in particular?
Why ask it
A general list covers bleeding, infection, clots and trouble with the connections to the bladder or the blood vessels. The useful part is which of those your own history makes more likely, and what the team does differently because of it.
What happens if the new kidney is slow to start working?
Why ask it
A kidney that takes days or weeks to wake up is a known possibility, particularly from a deceased donor, and it can mean dialysis for a while after the transplant. Hearing that in advance keeps a slow start from feeling like a failure, and you can ask how often it happens here.
How long will I be in the hospital, and how often will I have to come back in the first three months?
Why ask it
The early schedule tends to be heavy, with blood draws and clinic visits that can run to several a week at first. If you live far away, ask whether you are expected to stay nearby for a period and whether the center knows of low-cost lodging.
When will I be able to drive, lift, go back to work and exercise?
Why ask it
Give the surgeon your actual job and your actual week, because the answer for a desk and the answer for a warehouse are not the same. Your caregiver should hear this one too: it sets how long they are needed as a driver.
Anti-rejection medicines
Which anti-rejection medicines do you expect to put me on, and for how long will I take them?
Why ask it
Most people are told they will take them for as long as the kidney works, but have the doctor say it and name the usual combination. With the names written down, the pharmacy leaflets and the coverage paperwork make sense later.
What side effects do your patients notice most with these drugs, and which can be eased by changing the dose or the drug?
Why ask it
Tremor, stomach trouble, weight gain, swelling, raised blood sugar and changes to hair or skin are among the ones people report, depending on the medicine. Two things are worth learning here: which effects are worst in the early months and then settle, and whether reporting one leads to an adjustment.
What does a weaker immune system mean in practice for infections and for cancer risk?
Why ask it
The honest answer includes both, and it should come with what is done about it: preventive medicines early on, sun protection, regular skin checks. Ask which vaccines you should have now, since some may not be given after the transplant.
What should I do if I miss a dose, vomit one up or run out?
Why ask it
Timing matters more with these medicines than with most, and the right move depends on which drug and how late you are. Get the answer as a written rule with the after-hours number on it, and find out how early to request refills so that you never reach the last few pills.
What are the signs of rejection, and how do you find it and treat it?
Why ask it
Rejection often shows up in blood tests before you feel anything, which is the reason for all the lab visits. Have the doctor explain what follows a result that looks off, a biopsy included, and how often an episode they treat ends with the kidney still working.
Which other medicines, supplements and foods interfere with the anti-rejection drugs?
Why ask it
Grapefruit is the one most people have heard of, and the full list is longer and takes in some common antibiotics, pain relievers and herbal products. The practical rule to agree on is that nothing new gets started, by any doctor or from any shelf, until the transplant team has checked it.
How will these drugs affect the other conditions I have, such as diabetes, blood pressure or my bones?
Why ask it
Some of the medicines can push blood sugar, blood pressure or cholesterol up, or thin the bones, so go through your conditions one by one. Find out too who adjusts your other prescriptions afterward, the transplant team or your usual doctors.
Costs and life afterward
What will the evaluation, the surgery and the first year cost me, and who goes through my coverage with me?
Why ask it
How a transplant is paid for depends on the country and the plan, which is why most centers have a financial coordinator whose job is to work it out with you. Take your insurance details and any second policy to that meeting, before you are listed if you can, and leave with a written estimate that includes the medicines as well as the hospital bill.
How are the anti-rejection medicines paid for over the long term, and what happens if my coverage changes?
Why ask it
Coverage rules for transplant drugs depend on the country, the plan and sometimes on how long ago the transplant was, so ask how it works where you are and what would end it. A job change, a birthday or a move can all shift it, and the center's pharmacist or social worker usually knows the assistance programs.
What costs do patients here say they did not see coming?
Why ask it
Travel for all those early visits, parking, a place to stay near the hospital, a caregiver's unpaid weeks and the gap before you are back at work come up often. The social worker is the one who knows which grants or fundraising help exist and what the rules are for using them.
How long does a transplanted kidney usually last, and what happens when one stops working?
Why ask it
A transplant is a treatment and not a cure, and a kidney received young may not be the only one a person needs. Ask for the range the center sees with living and with deceased donor kidneys, what tends to shorten it, and whether you could be listed again if this one fails.
What will change about what I eat and drink compared with now?
Why ask it
People coming off dialysis often find the fluid and potassium limits loosen, while new rules about food safety and a few specific foods appear. The center's dietitian has the details, so ask for that appointment before the surgery and not after.
Is it safe to plan a pregnancy, or to father a child, after a transplant?
Why ask it
Raise it early even if it is years off, because some anti-rejection medicines are not used in pregnancy and switching takes planning. The team can tell you how long they ask people to wait and who would look after you during it.
What precautions will I need with travel, pets, gardening and being around sick people?
Why ask it
The rules are usually strictest in the first months and loosen later, and they vary from one program to the next. Mention the specifics of your life, such as a cat's litter box, a classroom job or a trip abroad, so the advice fits it.
After the first year, who is in charge of my care: this center or my own kidney doctor?
Why ask it
Many centers hand routine follow-up back to a local nephrologist and see you once or twice a year. Whichever it is, find out who orders the labs, who adjusts the anti-rejection doses and who you call first when something feels wrong.
What support is there for the emotional side, for me and for my family?
Why ask it
The wait, the steroids, guilt toward a donor or a donor's family and the fear of losing the kidney all weigh on people, and none of it means the transplant was a mistake. See whether the center has a psychologist, a support group or a mentor program that pairs you with someone who has been through it.
Getting through a transplant evaluation with your questions answered
Practical guidance for the conversation itself
Before evaluation day
Get the day's schedule in advance
An evaluation is rarely one appointment. You may see a transplant nephrologist, a surgeon, a coordinator, a social worker, a dietitian and a financial counselor in a single long day, with blood tests in between. Call ahead for the order, so you know how long you will be there and whether you can eat beforehand.
Put your kidney history on one page
Write down the cause of your kidney disease if it is known, the date you started dialysis and which kind, your operations, and any blood transfusions, pregnancies or earlier transplants. The team is likely to ask about each of these, and the last three can affect matching. Hand one copy to the coordinator and keep another.
Prepare your support person
Many centers want to meet whoever will drive you, sit with you and help with medicines in the first weeks, and may put questions to them directly. Tell them that beforehand. Give them the donor and recovery questions to ask, since those are the answers they will be acting on.
Decide what you most need to leave knowing
The whole list will not fit in one day, and it does not need to. Mark the five you could not sleep without an answer to and ask those first. The rest can go to the coordinator by phone or wait for the next visit.
Which person to ask what
The transplant nephrologist
Eligibility, your wait estimate, whether your disease could return, the anti-rejection medicines and long-term follow-up belong here. This is usually the doctor you will know longest, so it is also the visit for questions about life years from now.
The transplant surgeon
Take the operation itself, the risks tied to your body and history, the hospital stay and the limits on lifting and driving to the surgeon. If you have had abdominal surgery before, or have a peritoneal dialysis catheter, mention it at the start.
The coordinator
Your coordinator runs the file: which tests are outstanding, when the committee meets, your status on the list and how the call will come. Find out how they prefer to be reached, and save the number under a name you will recognize at three in the morning.
The social worker and the financial counselor
Costs, coverage, lodging, time off for a caregiver and help with finding a donor go to these two. People tend to hurry through this meeting because it is not medical, and it is often the one that settles whether the plan is workable.
Staying ready while you are on the list
Keep every phone number current
Tell the center the day you change a number or move. Ask what they want you to do about trips away: some programs only want your dates, and some will pause you while you are too far off to arrive in time.
Ask the wait question again each year
Estimates given at the evaluation go out of date. At each review, ask where you stand, whether your antibody level has changed and whether the team's view on which kidneys to accept for you has shifted.
Leave the door open for a living donor
A donor can come forward years into the wait. Let the people around you know you are still listed and where the center's donor information is, without pressing anyone.
Stay well enough for the surgery
Being listed is not the finish line. Keep going to dialysis or kidney clinic as scheduled, and ask the transplant team what they would like you to do about activity and weight in the meantime, so the day the call comes you are fit to say yes.
What slows people down
One test nobody booked
Files stall over a single missing result, often a screening the patient was meant to arrange at home. Every few weeks, check with the coordinator what is still outstanding and who is waiting on whom.
Ruling your donors out for them
Patients often decide a relative is too old, too busy or the wrong blood type and never mention the need. That call belongs to the donor team, and it can only make it for people who know there is something to be tested for.
Hearing 'not yet' as 'no'
A deferral usually comes with conditions. Get them as a list with targets, find out when your case can go back to the committee, and book the review before you leave the building.
Judging a center by one figure
Survival figures, wait times and yearly volume each tell part of the story, and a program that accepts older or sicker patients may show lower numbers for that reason. Ask the doctor what explains this center's results, and weigh the answer against distance, since you will make that trip many times.