Patients with end-stage kidney disease are carefully monitored through Froedtert Hospital’s Kidney Transplant and Nephrology Clinic. For many of these patients, external cleansing of the blood through dialysis provides adequate treatment. When dialysis or other treatments are no longer effective options, a transplant may be recommended.

A “pre-emptive transplant” may also be recommended if a kidney from a living donor is available. In a pre-emptive transplant, recipients avoid dialysis and related procedures, receiving a new kidney earlier in their treatment when they are generally healthier. According to the National Kidney Foundation, research has found that appropriate patients who receive a transplant earlier in their disease process are more likely to experience better outcomes. Kidney transplant may be done alone or with a pancreas transplant for patients with diabetes.

Preparing for Kidney Transplant Surgery

The transplant team provides comprehensive care before, during and after a kidney transplant to make sure patients and their families are fully prepared and that their experience goes smoothly. Prior to the transplant, the team works with patients to reduce possible medical, social and psychological risk factors that may impact their outcomes. Patients and their family members receive education about end-stage kidney disease and the kidney transplant process to enhance their success and long-term outcomes after kidney transplant.

Living and Deceased Kidney Donor Options

Transplants can be done using a kidney from a deceased donor or from a living donor. Living donor kidney transplants are the preferred method of transplant as they generally offer better long-term outcomes and shorter wait times.

Transplants using kidneys from deceased donors are also successful, but this approach requires patients to be placed on a waiting list, and it can take months and sometimes many years before a donated kidney is available. Once a kidney is available, several hours may pass between the time the kidney is identified and the time the transplant is actually performed. The transplant surgery is still planned, but due to the uncertain timing, it is done on an emergency basis.

Kidney Transplant Surgery

For transplant recipients, the kidney transplant surgery generally lasts about three or four hours and involves the following steps:

  • Prior to surgery, patients are given general anesthesia that allows them to sleep through the procedure.
  • Once the anesthesia is in effect and the patient is asleep, the transplant surgeon makes an incision in the lower abdomen.
  • The donated kidney is then placed in the patient’s abdomen and attached to the new blood supply and the ureter to the bladder.
  • The original kidney will be left in place unless the patient has had repeated infections, uncontrollable hypertension or problems with urine backup.
  • Once all of the connections to the new kidney are made, the surgeon closes the incision and the patient is moved to a recovery area. 

Kidney Transplant Recovery and Follow-Up Care

Following surgery, patients receive care in our dedicated transplant intensive care unit (TICU). Nurses staffing the TICU are specially trained to care for kidney transplant patients. Patients will stay in the hospital for a few days. The initial recovery time after the surgery is four to eight weeks. However, living with a new kidney requires a life-long commitment to a healthy diet and physical activity routine, along with a strict regimen of medications.

Medications, primarily antirejection drugs (immunosuppressants), protect the new organ from rejection. In any organ transplant procedure, the recipient’s body may consider the new organ a foreign object and try to eliminate or reject it.  To protect the new organ, patients must take these medications the rest of their lives.

Because excellent follow-up care is critical to maintain and enhance a transplant patient’s long-term survival, Froedtert Hospital offer a multidisciplinary Kidney Transplant Clinic to provide a central location to continue care. Our goal is to optimize each patient’s kidney function and overall health after kidney transplant. Dedicated post-transplant coordinators work with our patients to coordinate their transplant follow-up care.

For More Information

Learn more about the patient experience through the Transplant Center.

Kidney Transplant Patient Education Videos

The role of a pre-kidney transplant coordinator is to help provide you education about the transplant process. We will advocate for you throughout this process, and we'll work with you to make sure all of your needs are met. 

The process starts at your first visit. This visit will be approximately 3 to 5 hours. It is our expectation that at least one person attends this appointment with you. This person should be someone that supports you before and after transplant. This person can be a family member or a friend. This visit will be the first introduction to our transplant team members — your pre-kidney transplant coordinator, transplant surgeon, transplant nephrologist, social worker, financial liaison, dietitian and pharmacist. 

This appointment will give you the opportunity for you to learn about us and for us to learn about you. During this meeting, you will have the opportunity to ask questions and become fully informed about the kidney transplant process. You will also be signing several consents, including the kidney transplant evaluation consent, donor consent and multi-listing consent. 

After your initial visit, your case will be discussed at the next selection committee meeting to determine the risk versus benefit of transplantation. The selection committee is made up of the transplant team that you will be meeting. You can expect a call after the the committee meets and makes a decision if we are able to move forward or if we are unable to offer transplant as an option for you. 

If the committee has determined that you're able to move forward with evaluation, your coordinator will be in contact with you with your plan of care. This plan of care must be completed and test reviewed by the selection committee before you will be listed for transplant. 

  • The plan of care may include the following: Labs and imaging. Imaging may include abdominal CT, chest X-ray, chest CT, echocardiogram and ultrasound of the kidneys.
  • Consults may include infectious disease, cardiology, vascular surgery, transplant psychology, pulmonary, urology or dermatology. 
  • Procedures may include cardiac catheterization, stress test, EKG. 
  • General health maintenance testing including mammogram, pap smear, colonoscopy, prostate cancer screening and dental cleanings, as well as vaccinations are strongly encouraged to be up to date.

Please keep in mind that if new findings are discovered, this could lead to additional testing. You'll be encouraged to complete your plan of care within 120 days. Otherwise, you may be at risk of being removed from evaluation. 

If the team feels you are not a candidate at this time, you'll be provided with a plan of care to improve your candidacy. This plan of care must be completed prior to returning to the program. 

These are the consents that will need to be signed whenever you meet with the team. The first consent acknowledges that you received education as far as the evaluation process. It confirms that you understand that there will be testing involved prior to listing you for transplant and that testing is determined by the transplant team that you will be meeting with. If you are not a transplant candidate at this time, the team will also be giving you a list of testing or what is needed to improve your candidacy for transplant. 

There are risks with undergoing transplant surgery, just as there are risks with the alternative to a transplant, which is dialysis. Neither of these options are cures for your kidney failure, only treatments. There are risks and/or side effects from the medications you will need to take for the life of this organ. All of this will be discussed by various team members, so you're well aware of what could happen. 

By law, transplant centers are required to report the outcomes of transplant surgeries that have been completed at their centers. Every six months, this information is updated. You can go to the website srtr.org, which stands for Scientific Registry of Transplant Recipients and look up any transplant center in the United States to review how many transplants have been completed by various transplant centers and how many are still functioning after 3 years. This website helps you make an educated decision about where you would like to receive your transplant at. Just keep in mind that when a transplant center's numbers start to decline, there are efforts being made to improve that center's outcomes. 

Transplant services are a highly regulated area of medicine, and we are required to follow all of Medicare guidelines, UNOS guidelines, as well as hospital guidelines. You always have the right to refuse a transplant. You have a right to not follow through with the transplant process once you have heard the risks versus the benefits. You should also be aware that the transplant process has been thought out very carefully, and there is always a plan because of all of these regulations, including if there was a disaster and you did not know where to receive your care there is a plan in place. There are also changes being based on all of the research that is completed on an ongoing basis. 

UNOS is the governing body of all transplants. This is the organization that determines who is called for transplants and when. They will contact our center when there is an organ available. Their role in the transplant process is to ensure that a neutral party is choosing the best recipient for the organ available because of the shortage of organs that exists. 

In 2014, UNOS came up with a scoring system that is still in use today. It is called a KDPI score — a kidney donor profile index score. It is a score of 0 to 100 and is based on the donor. It includes multiple factors that include age, size, ethnicity, cause of death, health history and lab values. On the consent, there is an area asking if you agree to an organ that has a score of greater than 85. We encourage every patient to consider this option. 

Recipients are also given a score it is called a EPTS score — estimated post transplant survival score. It is another scoring system of 0 to 100. It's based on your age, diabetes status, dialysis and previous transplant. This score also assists UNOS with the offering process. Individuals with a lower EPTS score would benefit from a lower KDPI score, and those organs would be offered to those individuals first. These are just tools to assist with the distribution process. There are always exceptions to these rules. 

Another tool that is now in effect is the distance transplant centers receive offers from. The old system had geographical areas divided by population. The new system used by all transplant centers is distance. Transplant centers now have access to organs that are up to 250 miles away. 

Hepatitis organs are also an option when considering the risk you are willing to accept from the deceased donor. Transplant centers are monitoring the lab values from individuals that are on life support. They know the hepatitis status of the donor. 

Accepting organs from individuals that have been exposed to hepatitis B in the past and recovered is an option. There is no cure for hepatitis B, so if you were to receive this organ, you may be required to take an additional medication. You are always encouraged to be fully vaccinated against hepatitis B through your dialysis center or primary provider.

Regarding hepatitis C organs, you would be agreeing to accept an organ from an individual that currently has a known active hepatitis C virus. Receiving this organ would likely give you hepatitis C, which there is a cure for. No additional medication will be needed to maintain this status.  There is no vaccine at this time for hepatitis C. These three areas will be reviewed annually. 

Agreeing to the organs that are considered higher risk may help decrease the long wait time there is for a deceased organ. Currently the wait time is 5 years depending on blood type. You always have the choice to change your mind about your decision right up until the time of surgery. You will have one hour to respond to the phone call when there is an organ available. Our staff will make every attempt to contact you and your emergency contacts. After one hour, the organ will not be available. 

When the donor call staff contacts you, you will be given some information about the organ available, and you will have the option to accept or decline this organ. This call will be coming from a phone number you will not recognize. It is important for you to answer your phone and check your messages. 

All recipients are encouraged to be listed at more than one transplant center. Just keep in mind that wherever the transplant surgery takes place, that is where all the follow-up care will need to be as well. Working through your evaluation for kidney transplant may take some time. 

The goal for the transplant evaluation is to make sure that you are safe for transplant. After selection committee, you will receive a phone call and a letter with testing referrals and lab work that will need to be completed. As part of your workup, the transplant assistants will call you to schedule these appointments. Please call at any time if you are unable to make a scheduled appointment. The evaluation will be expected to be completed within 120 days, and if it is not completed it could affect your eligibility for transplant. 

When you are ready and qualified, your transplant center will list you active or inactive with UNOS. Active listing means that you have completed all of your required testing and the transplant team is able to receive organ offers for you because you are transplant-ready. 

Inactive listing means that you are unable to receive an organ offer, but you continue to earn time on the transplant list. There are many different reasons to be inactive on the wait list, such as insurance changes, weight gain, medical noncompliance, incomplete testing, if you are medically too well or loss of your support system. 

When listed for transplant, it is important to contact your transplant coordinator with updates to ensure that you remain transplant eligible. You'll be expected to call your coordinator if you change dialysis centers, you move, your phone number changes, when traveling, if you're having surgery, if you are admitted to the hospital, have insurance changes or if there are any changes to your support team. Keeping in contact with your coordinator will ensure that you're ready at any time to be transplanted. The transplant clinic will call you every six months for updates, and you and your support system will also be expected to attend the re-evaluation appointment with the entire transplant team yearly. 

As you get closer to transplant, you may be asked to be seen more often. Many times, additional testing is required for you to remain eligible for transplant and often your transplant status may be changed from active to inactive. But remember, just because you are inactive doesn't mean you have been removed from the transplant list. 

Once active on the transplant list, once a month you will need to submit monthly HLA or antibody testing. If you are on dialysis, your dialysis center will draw this and send it back to our center. If you're not yet on dialysis, it will be your responsibility to have your blood drawn at a local lab and send it back to our center. Lab tubes and boxes with directions and prepackaged mailing will be sent to your dialysis center or your home. Always make make sure that your first and last name, date of birth, time and date of the draw are on the tubes. This is very important to make sure it is completed monthly when you are active on the transplant list. HLA testing is one way that we can make sure that you and the donor are compatible for transplant. If we do not receive this testing, an organ may be passed up for transplant. 

Getting called in for transplant can happen at any time of the day. You may receive a call from an unfamiliar number. It is very important for you to make sure your voicemail is set up, and that you answer all calls when you're active on the transplant list. The donor call team is given a very short period of time to accept an organ offer, and if they're unable to contact you, they will move on to the next possible candidate. When you are called in for transplant, you'll be provided the time and location of where you should report to in the hospital. Prior to proceeding to the operating room, additional testing will be completed. 

On average, you'll be in the operating room for approximately 2 to 4 hours, and hospitalization following transplant is approximately three days. During that time, you and your support team will receive education on post-transplant care, and you'll meet your post-transplant coordinator preparing to go home. After surgery, you will recover on the transplant floor. Occasionally, there are instances where patients may need an overnight stay in the transplant ICU for closer monitoring. 

There may be times when you'll be called in and then suddenly sent home due to the quality of the organ. Your safety is our number one priority to ensure a successful transplant. Remember, waiting time varies for all patients. It is dependent on blood types, kidney allocation scores and your antibody testing results. Following your providers' and coordinators' recommendations will ensure that you are prepared and ready for transplant at any time. 

Following your transplant, there are a few things that you must be prepared for. All of your labs will need to be drawn at Froedtert Hospital's main campus twice a week for the first month. You will also see your transplant team once a week for the first month. After that, you will have your blood drawn every two weeks for two months and finally monthly for the first year. Your appointment schedule will be reviewed with you by your post-transplant coordinator. 

We all want your transplant to be a success. We are here to give you the tools and the guidance to help make that happen. We encourage you to continue watching the rest of the educational videos that we have provided.

We're going to introduce the major components of what's involved in getting a transplant. You'll hear from multiple members of our team, including some of our transplant nephrologists, other advanced practice providers, transplant surgeons, pharmacist, social worker, financial liaison, dietitian, as well as some of our transplant nurse coordinators. When we see you in person for your in-person evaluation, we'll answer any further questions you might have, as well as discuss further details related to your specific cause of kidney disease. We'll also discuss other important aspects related to your medical history that might play a role in kidney transplant. 

There are two treatment options for treating kidney failure — kidney transplant and dialysis, whether that's hemodialysis or perianal dialysis. Keep in mind that these are both treatments and not a cure for kidney disease. 

In an ideal candidate, kidney transplant is the preferred method of treatment for kidney failure. Data shows that these patients live longer and have a better quality of life with transplant as compared to those on dialysis. Those with transplant are able to travel more easily and don't have the time commitment required to complete dialysis on a nightly or three-times-weekly basis. There's also the possibility of returning to work after recovering from receiving a kidney transplant. However, transplant does come with its risks. These risks include increased risk of infection, increased cancer risk, as well as the possibility of developing diabetes or worsening cholesterol. 

Dialysis does come with risks, as well. These include, but are not limited to, development or worsening of certain cardiovascular diseases, muscle cramps, low blood pressure during treatments and increased risk of infection. Sometimes, however, when comparing the risk of dialysis to the risks of transplant, dialysis may be the safer option, and kidney transplant would not be recommended. 

Prior to listing a person on the kidney transplant wait list, we need to ensure that you're a good candidate. We need to make sure that you are healthy enough to undergo transplant and in the best shape possible at the time of surgery. This helps ensure that the benefits of transplant outweigh the risks. If review of your testing indicates any concerns, and it's believed that the risks of transplant would outweigh the benefits, you will not be placed on the transplant wait list. 

For some patients with certain medical conditions and risk factors, dialysis may actually be a better treatment option for their kidney failure. If the status of your health is believed to be stable for transplant, you will be placed on the transplant wait list with ongoing monitoring of your health while waiting for the transplant to occur. 

Potential kidney transplant recipients will need to complete a medical workup to ensure their body is healthy and strong enough to receive a kidney transplant. This testing is completed initially prior to active listing for transplant, as well as at regular intervals while on the transplant wait list to ensure that you remain a good candidate. Testing may include some or all of the following, plus any additional testing the medical team requests based on your specific health history. Testing may include things such as labs; CT imaging of your chest, abdomen and pelvis; cardiac testing including stress tests or cardiac catheterizations and Echocardiograms; specialty consults; as well as routine cancer screenings, including mammograms Pap smears, colonoscopies and prostate levels in your blood. It's important to know that through this workup we may find out you have health conditions that you may not have been aware of prior to this testing, including things such as cancer. 

Upon completion of the initial workup, your testing will be reviewed by the medical team, and a determination to proceed with listing for transplant will occur. If any testing finding indicates that transplant would not be safe for you, it will be recommended that you do not proceed with transplant at our center. Transplant is not for everybody. The last thing that we would want to do is make some someone's life worse after transplant, so it's our job to try and identify those who will be successful with a kidney transplant. Certain conditions are contraindications to getting a kidney transplant, including active cancer. If someone has a history of cancer, there might be a certain amount of waiting time that they need prior to being able to be eligible for a transplant. Those who have active substance abuse are also not candidates for transplant at this current time. If they have advanced diseases, that's something that we will take into consideration, but it could deem that they're not appropriate to get a kidney transplant. 

Ultimately, the last thing that we would want to do is complicate a patient's life more by giving them a transplant, so the goal is to make your quality of life and length of life better with a transplant. Some medical conditions might not exclude you from getting a transplant, however, they might make receiving a transplant more complicated and could ultimately impact your outcomes after receiving a kidney transplant. 

As a medical team, we will assess your past medical history to better evaluate your chances of success after getting a kidney transplant. For many people, transplant may be an excellent option for the treatment of endstage kidney disease, but there are risks that come along with transplant. While some of the risks are due to the surgery itself, many of the risks comes from the medications you will need to be on after transplant to suppress your immune system. 

The job of your immune system is to protect your body from anything that doesn't belong or that may be dangerous. This is usually good as it protects you from infections caused by bacteria, viruses, fungi and even cells that may become cancer. When you get a kidney transplant from either a living or a deceased donor, your immune system will know that kidney doesn't belong to your body. It looks different and if we do nothing, your immune system will start to attack the kidney. This is called rejection, and we want to avoid this as it can cause the transplant to eventually fail. Your immune system will be suppressed with medications, which will be discussed by the pharmacist in more detail. 

The major risks after transplant we will review are infections, cancers and then some other risks. There are also side effects specific to each medication which will be discussed by the pharmacist. Due to the medications that suppress your immune system, you will be at higher risk of infection after transplant. You may get common infections more often. These can include urinary tract infections, lung infections and skin infections. You may also get more unusual or rare types of infections. These infections are not common in most people, but they take advantage of the fact that you have a lower immune system to make you sick. These include viruses such as CMV, rare bacteria and even fungal infections. 

There are some important things you can do to help reduce your risk of infection. 

  • You will be on preventive antibiotics and antiviral medications after transplant. 
  • We recommend that you stay up to date on the vaccinations recommended by your transplant team. Remember to frequently wash your hands, avoid people who are sick and wear a mask in large crowds. 
  • It is very important to let your post-transplant team know if you are sick or not feeling well, so that we can make sure that you are getting the correct treatment. 

All donors, whether living or deceased, are screened for infections prior to donation to give us a better idea of the risk of transmitting a disease to the recipient. While our testing is really good, nothing is 100%. There is a small chance that this testing could miss something, and the recipient could become infected with a bloodborne disease. For this reason, we will recommend routine testing after the transplant. 

Your immune system also helps to detect and protect from precancerous cells. With immunosuppression medications, you will be at higher risk of developing certain types of cancers. Your risk of skin cancer is greatly increased. Transplant patients will need full body skin exams yearly with a dermatologist or skin doctor. Other measures you can take to reduce your risk include using good sunscreen, hats and protective clothing. 

We will also monitor for kidney cancer of your old kidneys. Over time, you may develop cysts that can become cancerous. This is done with an ultrasound every few years. It is also important that you stay up to date on your age-appropriate cancer screening, such as colonoscopy, prostate tests, mammogram and Pap smear. 

You will also have an increased risk of developing diabetes after transplant. This is the result of immunosuppression medications and how insulin is handled by your body. If you already have diabetes, your blood sugar may become higher, and you may need an adjustment in your diabetes medications after transplant. Diabetes can be treated with dietary changes, oral medications and injections, like insulin. Good blood sugar control is important to keep your new kidney healthy. 

Other risks after transplant include weight gain and worsening cholesterol. You will also still need to manage the medical problems that you had before transplant, which may include heart disease, stroke or other conditions. It is important you work to maintain a healthy diet, weight, good blood pressure control and blood sugar control, which are important to prevent damage to your new kidney and important for your overall health. 

Prior to receiving a kidney transplant, we will review your vaccination history and your exposure history. Based on this, we might make recommendations to get certain vaccines before you get a kidney transplant. This is important because your chances of having a successful response to a vaccine after a transplant are reduced. We know that certain immunosuppression meds make our chances of having a good response to the vaccine lower. For this reason, it's ideal to receive these vaccines prior to your transplant because your immune system will have a better chance at responding. 

After you leave the hospital, you'll be monitored closely with the labs and office visits to watch for any potential complications. These complications include, but are not limited to, delayed graph function, rejection and recurrence of disease. One of these complications is called delayed graph function. Your kidney has been through a lot before it gets to you, so there's a chance that your kidney transplant may not work right away. Some people do require dialysis for a short time after transplant until the kidney really starts working well. 

Another possible complication is called rejection. If your immune system recognizes the transplant kidney it might attack it which is also known as rejection. This can lead to damage or failure of your transplanted kidney. If rejection does occur, you may require readmission to the hospital, IV medications, further treatments and closer monitoring with labs. It is important to know that even with treatment, the kidney function may not fully recover. The best way to prevent rejection is by never missing your medications. It is also important to complete all labs in a timely manner, so that if rejection does occur, we can catch it early. 

Another complication is called recurrence of disease. Some diseases that can cause kidney disease in your own kidneys can recur in a transplanted kidney. We always consider your original cause of kidney disease when developing your post-transplant plan of care, including your medication regimen, additional treatments and testing. 

Additionally, diseases such as obesity, hypertension and diabetes can also affect your transplanted kidney. Therefore, good weight, blood pressure and blood sugar control are key to making your new kidney last as long as possible. 

If you do suffer from one of those complications, you may need a kidney biopsy. If we see abnormalities in any of your kidney labs, we may recommend a kidney biopsy. Kidney biopsies are used to help determine the cause of the lab abnormalities, which can then help guide your treatment plan. You also may need a readmission. Sometimes after kidney transplant, issues can arise that require readmission to the hospital. This allows us to take the best care of you and your new kidney. It is important that you remain available and that you have a transportation plan in case there is a need for readmission to the hospital. 

Transplant is a treatment option for your kidney disease and not a cure. You will still be a patient if you receive a transplant and will have medical conditions that need to be managed. Transplant is a team sport. It is important to know that you will need to have a primary care provider to manage your routine medical needs that are not related to your transplant. You may have additional doctors that you will need to follow up with as well — for example, a cardiologist, a dermatologist or an endocrinologist. 

Another critical team member is your support person. Having support is key to your success, not only during the evaluation process, but in the months and years following a transplant. You have reached the end of this educational video on kidney transplant. Our hope is that you will feel better prepared for your kidney transplant evaluation if you feel that transplant is the right option for you. Feel free to share these educational videos with your support team. Write any questions you may have down and share them with your transplant team.

Living kidney donation is just one of the treatment options for end-stage renal disease. There are several benefits to having a living kidney donor. Some of these benefits include:

  • Shorter wait time to transplant
  • Avoid dialysis
  • Living donor kidneys typically start functioning sooner after transplant
  • Lower risk of rejection after transplant
  • Living donor kidneys tend to last a little longer than deceased donor kidneys — on average about 12 years
  • Living kidney donation is a planned event, allowing our team to ensure the recipient is in optimal health prior to surgery

Who Can Be a Living Kidney Donor

Anyone can be a living kidney donor — a parent, a spouse, an adult child, an aunt, an uncle, a cousin, a friend, a coworker or even a complete stranger. All donors must be in excellent health with no medical problems that could increase their risk of developing kidney disease after donation. All donors need to be at least 18 years of age and able to give consent. They must be free of any pressure to donate and be fully able to understand all risks associated with kidney donation. 

Donors must also be financially prepared. All costs related to donations, such such as the evaluation, workup and surgery would be covered for the donor under the recipient's insurance. However, things that would not be covered by the recipient insurance for the donor would be any travel expenses that they may have, as well as the time off of work needed for workup and recovery. A donor's average recovery is four to six weeks after surgery.

Who Is Not a Good Living Kidney Donor Candidate

Anyone with uncontrolled high blood pressure or on blood pressure medication under the age of 50. If a donor is 50 years or older and only on one blood pressure medication, they can still be considered. 

Otherwise, anyone with diabetes, heart disease, kidney disease themselves, cancer, obesity (which is defined as a BMI or body mass index greater than 35), any active or untreated substance abuse, active infections or HIV positive are not candidates for donation. 

Matching a Kidney Donor to a Recipient

With living donation, there are a few different options available to our donor and recipient pairs. These options include direct donation and non-direct donation through a paired exchange program. Our medical team will discuss which options are best for both you and your donor once you are approved. 

How do we know you and your donor are a match? To figure this out, we need two things — a blood type and a cross match. There are four different types of blood — blood type A, B, AB and blood type O. Blood type O is the universal donor. This means they can donate blood to anyone. Blood type AB is the universal recipient. This means they can receive blood from anyone. It is important to note that, in the setting of transplant, the positive and the negative in a blood type — for example, O positive or O negative — does not matter. 

A cross match is the mixing of blood or tissue to see if a donor can directly donate to their recipient. A negative cross match in transplant is good and, on the other hand, a positive cross match may mean the risk of direct donation would be too high, and other options available will need to be discussed. 

Donors go through a similar process that the recipient does to get on our waiting list. All donors see our entire multidisciplinary team, complete lab work, have imaging done to look at their kidneys, as well as complete additional testing based on their lab results. 

Once all testing has been completed and our team feels that no further workup is required, the donor is then presented at our selection committee for medical approval to donate. It is important to note that for all billing purposes, donor evaluations and testing must be done at Froedtert Hospital. After donation, the average recovery for a donor is four to six weeks. 

After Donating a Kidney

All transplant centers are required to follow their donor for two years after donation. Follow-up appointments will be made for the donor seven to 10 days after surgery, at the six-month mark, one year and two years after donation. Once the two-year reporting period has been completed, donors are highly encouraged to follow with their primary care provider annually to ensure continued health. 

There are no dietary or lifestyle restrictions for a donor after donation, except for the use of NSAIDS. It is, however, very important for a donor to continue a healthy diet and lifestyle after donation. Donors can live a completely normal life with only one kidney, as their risk of developing kidney failure is minimal. 

Finding a Kidney Donor

It is completely normal to feel uneasy when talking to others about kidney donation. The most important factor is that you are comfortable with your story and disclosing the fact that you have chronic kidney disease. 

There are many ways to make others aware that you are in need of a transplant. Some of these ways include things such as assigning a donor champion or someone who can help spread the word; creating an outreach list of people to send a letter, card or e-mail to; creating a post on social media — such as Facebook, Instagram or Twitter. Other great places to get the word out that you are in need are church groups, neighborhood communities, billboards, bulletins, alumni magazines from high school/college, T-shirts, stickers, signs — you name it. 

The more you get the word out that you are in need, the more potential someone may come forward. Anyone interested in receiving more information about living kidney donors or interested in starting the process should contact our live donor team either by phone or by online submission.

A transplant financial liaison is a professional who helps with financial matters and hospital billing related to a transplant. They will work with other members of the transplant team, insurance companies and administrative personnel to coordinate the financial aspects of all care related to transplant. They will help determine how patients can best pay for their transplant. 

It is important for patients to have sufficient insurance benefits to be eligible for transplant. It is our job to make sure that patients have proper coverage, and that they understand what is required of them before and after receiving a transplant. 

A transplant financial liaison will meet with patients in the Transplant Clinic during the transplant evaluation. There are a few things patients should be ready to discuss. 

First, the liaison will review current and past employment, as well as current income. This will let us know if there are any short- or long-term disability benefits available through the employer. We also need to know if patients are receiving Social Security benefits or a pension. This will help the transplant team understand if there are additional coverage options available. 

Next, the liaison will review the current insurance plan or plans a patient has. There will be a discussion around what benefits are offered and how much a patient may be expected to pay, as well as if there are any limitations on where services can be provided. 

The liaison will then talk about the three parts of Medicare, as well as the different ways patients can become eligible for Medicare. The liaison will determine at the clinic visit if a patient is eligible for Medicare or when they may become eligible in the future. 

Another topic that will be covered briefly is living donation and how those services are covered. 

Patients will receive a list of the medications commonly taken after transplant. The list will include how these medications are billed, including what the patient out-of-pocket costs will be for each one. Additionally, options will be shared to help lower out-of-pocket costs. 

Finally, the liaison will determine if a patient needs any additional help, including fundraising options that are available to transplant patients. As a member of the transplant multidisciplinary team, the financial liaison is there before and after transplant to help patients navigate the costs associated with their transplant.

Clinical transplant pharmacists are an integral part of the kidney transplant team. The pharmacists work with you before you receive the transplant, during your hospitalization for the transplant and also after your transplant. One of the reasons that pharmacists work with you during all these phases of your transplant journey is that medications are an important part of your success. 

Before the transplant you will meet with a pharmacist to discuss your current medication routine. Topics for discussion that you should be prepared to share with the pharmacists are the following. 

How do you keep track of your medications at home? Some examples may be in a Saturday through Sunday pill organizer or in a specific location in your house where you are reminded by visually seeing them. Phone alarms are another example. 

How do you keep track of dose changes? For example, if your doctor increases or decreases the dose of one of your medicines, do you keep a log of this information? 

These questions are important to consider because after the transplant you will be on 15 to 20 medicines per day with frequent dose changes — especially in the beginning until the transplant team finds the right dose for you. 

Common Transplant Medications

Here are some of the most common transplant medications or pills. These are also called immunosuppressive medicines or anti-rejection medicines. The reason you take these medicines is so that your own immune system does not attack or reject the newly transplanted organ. Your body's immune system will recognize the new kidney does not belong to you and want to attack it. 

In the video, the top name is the generic name and the bottom in bold is considered the brand name of the medicine. Many times the transplant team uses these names interchangeably. The three medicines you start on are:

  • Tacrolimus (brand-name PROGRAF®)
  • Mycophenolate (brand-named CellCept®
  • Prednisone

All three medicines are available as generic, and most insurance companies prefer that you take the generic form of these medicines. In other words tacrolimus, mycophenolate and prednisone. 

The pictures in the middle of the chart in the video show you the capsule and tablet strengths. It does not mean you will be on all the different capsules or tablet strengths, but rather it is what is available to make up your dose. 

All three medicines are taken to prevent organ rejection. All three work at different parts of the immune system, so think of these three medicines as teammates. Each one is important in its own way. All three may be a part of your lifelong regimen. 

The tacrolimus and mycophenolate you take twice a day — in the morning and the evening. We encourage you to take them 12 hours apart — such as 8 a.m. and 8 p.m., or another routine might be 9 a.m. and 9 p.m. The idea is to find a time that works best for you and that you can do consistently. 

There are special instructions. For example, we monitor blood levels of tacrolimus to make sure you are on the right dose. We will explain this in more detail once you are transplanted. 

The side effects are listed. This is not an all-inclusive list and just because the side effects are listed does not mean you will experience those. 

Tacrolimus can affect the health of the kidney. If you are in too high or too low of a dose, your kidney function may decrease. That is one of the main reasons we monitor blood levels of the tacrolimus. We need to make sure you are on the right dose of the medicine. Too little of the tacrolimus in your body, your body can reject the new kidney and then it does not work as well. Too much of the tacrolimus in your blood can also make the kidney not work as well. 

Going to the lab and getting your blood work is just as important as taking the medicine because, if you're on the wrong dose, it can affect how well the transplant works. Additionally, you may see increases in blood sugar. If you do not have diabetes before transplant, you may develop diabetes or high blood sugar after transplant. If that happens, you may need to start medicines to treat the high blood sugar. The transplant team uses insulin, which are shots, to treat high blood sugar after transplant. If you are already receiving treatment for high blood sugar before transplant, you can expect insulin after the transplant. Other things you may experience are increases in blood pressure or cholesterol. If that happens, we may have to start or continue medicines for those reasons. 

Mycophenolate can cause diarrhea. If that happens, please talk to the transplant team. Please do not ever stop taking medicines without talking to the transplant team. 

The side effects listed under prednisone — such as upset stomach, mood changes and trouble sleeping — are often dose-dependent, meaning when you are on higher doses you may experience these side effects. Over the first few months of the transplant, the prednisone dose is lowered and often those side effects improve. Although this is a very common transplant medication regimen used by most transplant centers, if you are unable to tolerate these medicines, we can consider alternatives. These just happen to be very good at preventing rejection. 

Additional Transplant Medications

Because immunosuppressives can decrease your ability to fight off certain infections, we start other medicines to help prevent infections.  The names are:

  • Sulfamethoxazole trimethoprim (often abbreviated on the pill bottle as SMZ-TMP), commonly called BACTRIM™, is used to prevent certain lung infections.
  • Nystatin helps prevent an infection in your mouth called thrush.
  • Valganciclovir helps prevent viral infections.

The SMZ-TMP and Valganciclovir are tablets, while Nystatin is a liquid medicine. Pictures in the video demonstrate how the medicines are available. The duration of the medicines is listed in the video. BACTRIM is often continued for the life of the organ transplant. Nystatin is just while in the hospital after the transplant, and Valganciclovir is for three to six months after the transplant. The transplant team will tell you when you can stop these medicines. BACTRIM is taken once a day in the morning. Nystatin, taken four times a day, is swished and swallowed, and Valganciclovir is taken once daily. Special instructions are provided, as well as side effects. These medicines overall are well tolerated because they are given at lower doses since the goal is to prevent an infection rather than treat an infection. 

You may also have to continue on some of your current medicines — such as medicines for blood pressure, diabetes or cholesterol. We also start other medicines, such as magnesium pills if you have low blood magnesium levels or phosphorus supplements if you have low phosphorus in your blood. All things we monitor and inform you of after the transplant.

All of this information about the transplant medicines may be overwhelming. During the transplant hospital stay, you will work with the transplant team to learn about the medicines in more detail. A yellow medication card with the names of the medicines, doses and when to take the medicines will be provided as well. The name of the medicine, its strength and the purpose of each medicine are listed. For example, PROGRAF (or the generic tacrolimus) is the first medicine on the list. Please be aware that the two medicines' names — PROGRAF and tacrolimus — may be interchangeably used by the transplant team. This is not meant to confuse you, but unfortunately sometimes it is confusing.

  • The medicine you receive is most commonly going to be the generic form called tacrolimus. It is available in 0.5 milligram, a 1 milligram and a 5 milligram capsule. It is used to prevent rejection. 
  • Next on the list is CellCept (mycophenolate mofetil) which is available as 250 milligram capsules or a 500 milligram tablet. It's also used to prevent rejection. 
  • And lastly, making up your immunosuppressants is prednisone. It's available in many strengths, but the dose that is used for post-kidney transplant is the 5 milligram strength. It is used to prevent rejection. 

Next on the yellow medication card is the section for instructions. This is how you should take the medicine. It's important to pay attention to the dose that you are told to take in relation to the capsule or tablet strength that you were given in your pill bottle. For example, the dose on the yellow card for tacrolimus is 4 milligrams. Based on the capsule strengths available, you would need to take four of the 1 milligram capsules to make up that dose, and you need to do this two times per day — morning and evening. For mycophenolate mofetil, the instructions are to take 1,000 milligrams two times per day. You are given 500 milligram tablets. You need to take two tablets of 500 milligrams twice per day. Lastly, prednisone, the dose on the yellow card indicates 20 milligrams. You are given a 5 milligram tablet that means you have to take four tablets to reach the 20 milligram dose. If it's helpful, add the number of tablets or capsules needed at each spot. 

When to Take Your Medications

On your yellow medication card, an X marks the spot of when to take the medicine — morning and evening for example, such as 9 a.m. in the morning and the evening medicines at 9 p.m. Additionally, while you are in the hospital, the transplant team's goal is to work with you on reading the label of the pill bottles and making sure you or your support person feels comfortable with the transplant medicines and how to take the correct dose of medicine. Do not hesitate to ask questions at this time. We want you to be successful when you go home and to do that it is important to be able to take the correct doses of medicines at the correct time. 

There are a few more instructions that will be shared with you as well regarding the medicines, but this is a high-level overview. For completeness sake, however, the tacrolimus requires blood monitoring to make sure you're on the correct dose. It is important that on the mornings you get your blood drawn that you take the medicines, particularly the tacrolimus, AFTER the blood is drawn. 

A pill box similar to the one pictured in the video will be provided to you during your hospital stay. This is a Sunday-through-Saturday pill box with morning, noon and evening bed slots, so you can follow the yellow card and put the medicines in the correct location. It will be really important to keep the yellow medication card up to date with dose changes and so forth, so you make sure you take the correct dose. The yellow medication card instructions are often written in pencil so the doses can be adjusted. 

Doses can change a lot, especially right after transplant, and so it is important to have an organized system to take your medicines consistently and as directed. Even setting phone alarms at specific times and having them repeat consistently is another tool patients find helpful to remember to take their medicines. 

Once you leave the hospital, you will follow up with the transplant team. As part of those visits, you will meet with a transplant pharmacist. It is important that you bring with you to the visit the pill box filled with your medicines, your yellow card and, if possible, your pill bottles. The pharmacist can review your pill box and help make sure that you're taking the correct dose of medicines. It is understandably a lot of new medicines, and we want to make sure you feel comfortable setting up your medicines and taking the medicines correctly. 

In summary:

  • Immunosuppressive medicines are continued for the life of the organ transplant. Please make sure you take them as instructed. 
  • Missed doses can lead to rejection or your kidney not working as well, or not working at all. 
  • If you feel like you are experiencing side effects, please contact your transplant nurse coordinator before stopping your medicines. 
  • Any concerns about getting your medicines due to the cost, changes in insurance, transportation to the pharmacy or any other circumstances, please contact your transplant team immediately. 
  • Please do not start any new over-the-counter medicines, herbal pills or supplements without talking to your transplant team. It is really important that the medicines are reviewed for your safety. 

You will be discharged home from the hospital soon. We want to ensure a smooth transition from the hospital to your home. Before you go, there are a few things we want you to know. Before we get started, you will receive all of this information in writing. 

Medications

  • You must take all of your medications as prescribed. If you miss a dose, call your transplant coordinator right away. 
  • Your anti-rejection medicines will be taken at the same time in the morning and evening, 12 hours apart. 

On lab days, you will need to have your blood drawn at the time you would normally take your morning medications. You must wait until after after your blood is drawn to take your medications. This is extremely important. If you accidentally take your medications before your blood is drawn, please let your transplant coordinator know. 

Support Person or People

Having a support person is critical to success after transplant. You will need your support person to stay with you for a minimum of seven days. They should help you with your medications, meal preparation, lifting, household chores and transportation. It is important that they come with you to your clinic appointments so that they know how to help you through your recovery. 

Drink Water

You should drink eight glasses of water per day to stay hydrated. This is a big change from before transplant where you had a fluid restriction. It can sometimes be a difficult adjustment. 

Monitoring and Your Transplant Booklet

If you have a blood pressure cuff, thermometer and scale, you should be taking these readings every morning and writing the results in your transplant booklet. This booklet should be brought to the clinic with you and shared with your transplant team. 

You will be given a urine collection container before discharge. There are markings on each container that will allow you to measure the amount of urine you make. Please record the amount in your transplant booklet. 

If you are diabetic or are new to needing insulin, you will need to check your blood sugars before each meal and before bedtime. Your results must be written down in your transplant booklet. Please know that your transplant team does not manage your blood sugars or insulin. Your inpatient care team will let you know who to follow up with after you leave the hospital. 

Taking Care of Your Drain

If you are going home with a drain, you will likely need to empty it several times per day. It is okay to empty it when it is close to being full. Please empty the drainage in the container provided to you and record the amount in your transplant booklet. Make sure the bulb is squeezed and held while putting the cap back on to ensure proper suction. You may then dump the drainage from the measuring container into the toilet. 

When to Contact Your Transplant Team

There may be times when you will need to contact your transplant team no matter what time of day it is. Please contact us any of the following occur.

  • Fever of 100.5 degrees or higher
  • Decrease in your urine output, urgency or pain with urination
  • Unable to keep your medications or fluids down
  • Unexplained abdominal pain or pain over the transplant site
  • Weight gain of 3 pounds in 24 hours or 5 pounds in 1 week
  • Redness, swelling, pus or an open area at your transplant site. 

We want you to feel confident as you return home following your transplant. Your transplant team is here to help you navigate life as a transplant patient. Receiving a transplant does not mean your disease is cured. You are still a patient with chronic health conditions that need to be managed. There will still be ups and downs, and we are here to see you through them. 

Following the instructions provided to you by your transplant team will allow you to maintain good health and continually care for this gift of life. If you experience any of these issues, please contact your transplant team. 

To reach your transplant coordinator Monday through Friday from 8 a.m. to 4:30 p.m., please call 414-805-3100. For any concerns after hours or on the weekends or holidays, please call our Access Center at 414-805-4700. Make sure to inform them that you are a transplant patient and need to speak with a member of your transplant team.

A social worker is a part of your transplant team to make sure that you have all the resources you need to take care of a transplanted organ. As you're probably learning from some of the other videos, there's a lot that goes into having a kidney transplant — both on the front end and the back end. That can be a very complicated thing to go over. It can create a lot of new questions about like life things — like how does anybody realistically fit these things into their life. Those are very realistic, good questions. 

When you come and see us for the first time, we're going to go over a lot of the parts of transplant that are maybe not quite so medical. We'll talk about your social support. We really want to make sure that you have a good plan in place when the time comes for transplant because we know that our patients who have some help managing all these responsibilities after transplant are the ones who they're going to have a better outcome. 

We also want to make sure that we take care of things like work and school. Transplant is a bit of a marathon, more so than a sprint, so it gives us a little bit of time to talk about these things and create a plan for let's say you are unable to work during your recovery, or you're unable to work leading up to the surgery because you started dialysis. We'll go through a lot of those scenarios just to make sure that we have a good plan in place to meet all of your needs. 

We'll also go over transportation. We want to make sure that you have a ride to the hospital if you get called in with an organ offer, as well as all of the follow-up appointments on the backend. 

We also want to make sure that you have a good safe home to return to when you discharge. So we'll talk about things like making sure that housing is paid for. That you have the financial means to do so, and that you have a safe place to return to. 

We also want to have a little bit of a discussion about finances. We work hard with our financial liaisons to help you come up with a financial plan leading up to transplant and the recovery. We're also here to talk to you about Social Security and any questions you have about navigating that system. 

We'd love to talk to you about advance directives if you're willing. Namely, that means a medical power of attorney for health care. That is basically appointing somebody who would make medical decisions on your behalf if you would ever need to. We don't anticipate that being something that you would need for the purposes of transplant, but no one ever really anticipates having to use those documents until they're in that situation and it's always nice to just have that in place and have those discussions with your loved ones when making those decisions. 

We'll have a discussion about adherence, and adherence is a fancy word for how well you follow doctor's orders, take your medicines, keeping up with your clinic appointments just because transplant is really more of a treatment for your kidney disease — not so much a cure — so it still requires some work on the back end, and we're going to want to make sure that we're establishing good habits before your transplant. 

We're also going to have a discussion about your mental and spiritual well-being, and we want to make sure that you have all of your emotional needs met. It's very common for our patients with chronic illness to suffer from things like anxiety and depression and have those be a part of their everyday life. Those are not things we hold against our patients, but they are part of taking care of all of you. We want to make sure we talk to you about what's available on our team to assist with those needs. We also want to make sure that we're addressing your spiritual needs and getting you involved with Chaplain Services if need be. 

We're also going to talk to you about alcohol use, tobacco and any history of other drug use because we want to make sure that we're doing everything we can to keep you healthy and take care of a precious resource like a transplanted organ. 

It is very important that you bring someone with you to your first visit with us. It's a long appointment. You're going to meet a lot of different people, and it can be overwhelming because we're talking about you, your body, your health and a lot of processes that might be very, very new to you. We want to make sure that you have another set of ears there to take in some of that information if you're feeling overwhelmed — somebody who could maybe receive some caregiver education. We want to make sure that we come up with a plan for transplant where somebody is able to help you with a few things after your surgery. 

For our patients who have a living donor, that is a planned surgery. That is something we can put on the calendar. That is something that you might even have the opportunity to know which doctors are going to be there during that time because it's all going to be laid out ahead of time. 

We don't have that luxury when we're working with a deceased donor kidney. Many of our patients don't have living donors, so one of the things that we have to keep in mind is an emergent transportation plan. Once your name comes up on the list and the kidney becomes matched, you could realistically be called into our clinic anytime. We want you to be ready to have a plan to get here — morning, noon, night, weekend, holiday, — as long as you have a plan in place to get here. We understand that many of you live a couple hours away, and we're able to get our patients transplanted with good quality organs when our patients come from a little bit of a distance as long as they have a transportation plan in place. 

When you come to the hospital for your transplant, we expect to be here about three days — sometimes longer if we have complications, about three to five. When you're here, you'll be up, you'll be moving. We want to make sure that you're active, you feel good and that, when you go home, you can do quite a few physical tasks for yourself. 

In the time that you're here, we're going to want to make sure that somebody in your support system comes here to go over all of the medications. There are a lot of medications that go into a transplant treatment plan. You just had major surgery, and you might be taking new medications you've never taken before. You may not feel quite like yourself. It can be really, really hard to learn about these meds, but they're important. We want to make sure that, while you're learning about them, somebody else is learning about them, too, and can support you with this when you go home. 

When you do go home, we would not want you left alone for at least a week, sometimes longer if needed depending on how you're doing. During this time, we would want caregivers to look for a few things. We want to make sure you're eating and drinking. Hospitalizations have this weird effect where we tend to lose sense of time, and our appetites change. It's pretty normal, but we want to make sure that you're eating all the meals you're supposed to be eating and taking in those calories because it does help heal from your surgical wound. 

We also want to make sure you're drinking a lot of water and for many of our patients that's a new habit. Hopefully, you're already in the habit of staying well-hydrated. Many patients who are on dialysis are asked to limit the fluid they take in, so this can be a whole new habit to build. It's always good to have somebody there to remind you to be taking in your water. 

We want to make sure you're taking your medicine correctly and on time. As we said before, that's a very, very important part of this. We really want your support system to be aware of is you might feel a little bit different emotionally when you first go home from the transplant. Some of that is because you just experienced this major life event. It's realistic to understand that can make anybody feels some strong emotions, but we also give you medicine that might make that a little bit worse at first. 

You'll be taking a medication called prednisone. It's a steroid, so it can increase your anxiety. It can make you feel a little bit more depressed. For some people, prednisone can also make it harder to sleep. You put all those things together — it's just good for somebody to be there to be able to ground you and remind you that this is temporary. Eventually, we'll take that medication and wean it down to a smaller dose where you really shouldn't be experiencing those side effects anymore. 

When you discharge from our hospital, it's pretty common to need some medication to manage your pain. While you're taking that medication, we don't want you to drive. Plan for about three weeks or so of needing some assistance with driving — getting to all of your follow-up appointments and running some of those major errands. We know that's challenging because that's also when you have to be here the most. 

After your surgery, we want you to come see us here at Froedtert Hospital, the main campus about two to three times a week for about a month or so. You'll have your labs done and see your surgeon and transplant nephrologist. We're going to want to make sure you get those labs done here for at least a month because that's how we know we're treating you correctly, and we get those results very quickly. After the first month, you can go ahead and work with your transplant coordinator for a better location, a more convenient location to get those labs drawn if possible. 

We're not going to want you to lift any anything heavier than 10 pounds for about eight weeks or so. We want to make sure that you are not uncomfortable and avoiding any kind of wound infection or hernia or complication at the site. Those are good jobs for grandkids — for young kids to be helping with laundry baskets and grocery bags. Make sure that you are avoiding snow removal and lawn care. 

Sometimes when people come see us, they're concerned because they don't feel like they have the ability to develop a support plan. We still want to make sure we talk to you about these things because we may be able to help you access some community resources to make your support system a little bit more robust. Everybody's support system looks a little bit different — whether it be family, friends, neighbors, church, community, personal care workers or a combination thereof. We want to make sure that we address all of the opportunities and possibilities as to how we could help you obtain the support system you need to be successful with a kidney transplant. 

While your transplant team is going to be taking care of you and your transplant-related needs for the life of this transplant of this organ, it's very important that you follow up with your primary care provider. We are happy to partner with them and make sure that we're taking good care of all of you. Sometimes, when we're taking in the time to learn all that we can about kidney transplant from all these professionals, we can still have a lot of questions. 

Many patient questions are best answered by somebody who's done this before. Which is why we have a Peer Mentor Program. We have patients that we've transplanted in the past that are at a good point in their lives and in their recovery to talk to you about your experience and validate some of the experiences and feelings you may be having right now. It's not required, but it can be an extra layer of support and a whole extra layer of wisdom for you as you're making decisions about kidney transplant and how you'd like to move forward. 

We have that same program for our caregivers. As we talk about all these caregiver responsibilities after a kidney transplant, it is normal for caregivers to also feel a little bit overwhelmed. We want to give them the opportunity to speak to somebody else who's taking care of somebody who's had a kidney transplant, so that way they have somebody who can speak to that firsthand experience. 

There's a lot of life stuff as we've gone over that goes into how we live our lives with a transplanted organ, and there are some life risks associated with a kidney transplant. It's fair that you know all of the things that we're looking for before we pursue transplant. 

Mood changes with the prednisone — that is something that our patients experience sometimes, and we want to know if that's going on. There are ways that we might be able to help. We know it's temporary, but we want to make sure that we're taking care of that. 

Surprisingly enough, the family dynamics can change. A caregiver or a partner who was a caregiver is maybe not having to do those things like they had been before the transplant. That can be challenging when much of your identity or your role in the family is wrapped up in that caregiver identity or the "sick person" identity for the patient. It can be challenging to have to kind of redefine those roles. 

Transplant can put you at risk for things like body image issues. You're going to have a scar on your abdomen. That can be a new experience for some people, and we want to make sure that you're maintaining a healthy relationship with your body, diet and exercise. Those are things that we'll want to talk to you about after your surgery. 

It is also normal for our patients to experience what is called survivor's guilt. That is feeling guilty or bad about tragic circumstances from a deceased donor that led to your new transplant. It's okay to have those complex feelings. It's very normal to feel more than one thing at any given time as you go through this journey. We want to have the chance to talk to you about all sorts of ways that you can honor your donor and their family, and if possible, involve some mental health resources to manage some of those feelings as well. 

Why get a kidney transplant? Many of our patients report feeling better after their transplant. After the initial recovery (which takes a few months), they report having a more energy, being able to do things that they hadn't been able to do before and obviously freedom from dialysis. That can be a big quality-of-life enhancer — giving you some of that time back, some of that wellness, that energy, the ability to travel, possibly return to work or school, and in general hopefully, live a longer life. 

These are general guidelines about healthy eating after your kidney transplant and tips to reduce nutrition-related side effects due to the transplant medications. Your transplant team may describe different requirements based on your specific situation. 

The anti-rejection medications that you will take after transplant have a lot of dietary side effects. Don't get overwhelmed. This does not mean you will have all these side effects. Every patient is different in how they react. 

PROGRAF® can raise potassium levels which can be dangerous for your heart. You may have already been told about these high-potassium foods if you have been on dialysis, or your kidney doctor may have told you to limit your high-potassium foods. You may have to restrict your potassium foods to decrease this level. These foods include bananas, oranges, potatoes, milk and more. Some patients may not need to restrict. 

You will need to restrict sodium if you are having high blood pressure, or if you have fluid buildup in your legs. That means limiting salt at the table and while cooking, limiting salty snacks, canned soups, veggies and frozen dinners, pizza, smoked meats, pickled foods and fast food. 

It is important to get in enough protein to help you heal your incision, and prednisone can break down your muscle mass. These are high-protein foods to include at every meal and snack — meat, fish, eggs, dairy products, nuts and beans. 

Prednisone can keep calcium from getting into the bone, so it will be important to include good sources of calcium to protect your bones. Good calcium sources are milk, yogurt, cheese, fortified cereals and juices. Calcium supplements with vitamin D can also be used. 

Some medications may cause low phosphorus levels. You may have to increase phosphorus-rich foods. We can give you a detailed list of phosphorous foods. You may have to take a phosphorous supplement to increase back to a normal level. 

Some medications may also cause low magnesium levels. You may have to increase magnesium-rich foods also. We can give you a detailed list of magnesium foods, and you may have to take a magnesium supplement to increase back to a normal level. 

After your transplant, you will have a kidney that is functioning. You will no longer need dialysis. You need to keep the kidney hydrated with 8 to 10 cups of fluid a day, which includes water, milk, juice and soda. If you have delayed kidney function, you may need to decrease your fluid intake for a short time. Limiting coffee, tea and soda to less than four cups a day is recommended. 

PROGRAF and prednisone can raise blood sugars to the point where you may require insulin shots or an adjustment of insulin if you already use insulin. The nursing staff will show you how to check your blood sugars and how to give yourself insulin. The dietitian will counsel you on the diabetes diet. You will be asked to limit and/or avoid sugar, sweets and desserts. You will also have to limit your carb intake, like snack foods, potatoes, rice and bread. 

Grapefruit and pomegranate interact with Prograf. You will have to avoid fruit and juice in those two categories. 

If you want to try a vitamin, mineral or herbal supplement on your own, please ask the dietitian first so we can check to make sure it is safe with all of your other medications. Please be aware that herbal supplements are not federally regulated and can interact with transplant medications. Prednisone and CellCept® can increase cholesterol and triglyceride levels, which can increase your risk of heart attack and stroke. Here are some tips on how to lower your fat intake.

  • Choose lean meat.
  • Remove fat and skin from your meat products.
  • Limit bologna, hot dogs and salami.
  • Choose low-fat cooking techniques, such as baking, grilling and broiling.
  • Choose low-fat dairy products like skim and 1% milk.
  • Choose olive oil, canola oil and fat-free pan sprays.
  • Use low-fat and fat-free mayonnaise and salad dressings. 

Often times, patients gain unwanted weight. This can happen due to increased appetite after feeling better, and prednisone can make you hungry. Some of these tips can be helpful in preventing weight gain.

  • Drink water before meals to fill you up.
  • Eat regular meals to help decrease your hunger and craving of high-calorie, high-fat foods.
  • Take 20 to 30 minutes to eat a meal to give your brain a chance to register that you're full. The slower you eat, the less you take in. 
  • Use smaller plates to help you limit your portions. 
  • Half your plate should be vegetables and/or salad. 

Anti-rejection medications will constantly be suppressing your immune system. You will not be as strong in fighting off infections or foodborne illness. If you get sick from food, you can have vomiting and diarrhea, and you won't be able to keep your transplant medications or fluids in, which is dangerous for your kidney. Simple things to do to protect yourself:

  • Wash hands before meals and meal prep. 
  • Cook all your meats well done. 
  • Take temperatures. In your education sheets, I have temperatures listed for all foods. 
  • Do not eat runny egg yolks, like sunny side up, over easy or poached eggs. 
  • Do not eat raw fish, like sushi or oysters. 
  • Heath hot dogs and deli meat to hot, and then cool before eating. This ensures that you're getting rid of any listeria bacteria. 
  • Be clean in the kitchen by washing everything down with hot, soapy water. 
  • Use separate cutting boards when cutting fresh meats and vegetables to avoid cross contamination. 
  • Wash fruits and vegetables thoroughly. 
    • Soak hard skinned fruits and vegetables like apples, melons, carrots and potatoes in water for a few minutes and then scrub with a vegetable brush. 
  • Store your food properly. 
  • Refrigerate foods from the table, the grocery store and restaurants as soon as possible. 
  • Do not thaw meat in the sink or on the countertop. Thaw in the refrigerator. Look for the word "pasteurized" on all juices and cheeses. If you don't, please avoid. 
  • Avoid foods such as apple cider, fresh-squeezed juices and soft cheeses (like Brie, Roquefort, bleu, feta and farmer's cheese). 
  • Avoid salad bars, buffets, picnics, bakeries in which you reach in to get what you want — anywhere where the public can touch your food. We don't know what the public does. If they are sick and not washing hands and you touch the same utensils, you can get sick and have a much harder time recovering.

Please keep in mind these are general guidelines that we ask patients to follow after transplant. We can provide you with more information and answer all of your nutrition questions when we see you in clinic.

We want you to be as prepared as possible, so that you understand how a patient navigates life with a transplant. Every patient is assigned a transplant coordinator and a transplant nephrologist to assist with coordinating care that relates to the kidney transplant. 

This is important to remember — patients must have a primary care provider to direct all areas of care that do not relate to the kidney transplant. For example, a primary care physician would manage cholesterol levels and medications, monitor bone health and order routine general health maintenance testing — like colonoscopies, prostate exams, Pap/pelvic exams and mammograms. 

The transplant team will monitor the results of blood tests and make adjustments to the transplant medications. They will see patients at each clinic appointment to provide ongoing education and answer questions related to the post-transplant care regimen. There may be times where a patient may need to be referred to other departments for other health conditions — for example, a cardiologist or a urologist or even a dermatologist. 

At Froedtert Hospital, we have a dedicated transplant unit called 4 Northwest. As a program, our goal is to get patients who receive a kidney transplant home within three days. The main focus while in the hospital is to closely monitor the new organ's function, including watching for signs of rejection, infection and surgical complications. Education starts immediately and will include the immunosuppression medications and their side effects, how to organize a pill box and the importance of taking all of the medications as prescribed. There will even be a quiz that will let the transplant team know if the patient understands what each medication is for. 

The bedside nurse will teach patients how to care for their incision, what to do with a drain, how to check blood sugars and how to monitor the amount of urine the patient is making. The transplant coordinator will work with the inpatient team to assist with the transition from the hospital to home. Additional education will be provided regarding when to have blood drawn, upcoming clinic appointments and ensuring the patient has the right contact information for how to reach the transplant team. 

The medicines that will be taken following a transplant help prevent rejection of the transplanted organ. In addition to this, there are medications to help prevent bacterial, viral and fungal infections. Other medications taken prior to transplant, such as medications to treat blood pressure, cholesterol or vitamin supplements, will continue after transplant. If a patient is diabetic and receives a kidney transplant, the diabetes medications will continue and will be managed by a primary care doctor or an endocrinologist. 

A kidney transplant does not cure diabetes. It is important to know once transplanted, medications may change. There are certain over-the-counter medications that can and cannot be taken. The transplant team will provide each patient with a list of the acceptable over-the-counter medications to take. It is important to ask the transplant coordinator prior to starting any over-the-counter medications that are not on the list. In addition, please contact the transplant coordinator with any medications that are prescribed by a different provider. This is important because there are medications out there that have the ability to interact with the transplant medications that can lead to a blood level being too high or too low, putting the patient at risk for rejection or infection. 

Upon discharge from the hospital, patients are provided with instructions that will include a complete medication list, transplant clinic follow-up appointments, fluid intake recommendations, blood pressure guidelines, lab schedule for blood draws and instructions for drain and incision care. The inpatient social worker and case manager will ensure there is proper support plan in place and will also discuss with the patient what pharmacy they would like to use to fill their prescriptions and will help to arrange infusions, home health care, physical therapy or dialysis as needed. 

There may be times when patients will need to contact the transplant team no matter what time of day it is.

  • Fever of 100.5 degrees or higher
  • Decrease in urine output, urgency or pain with urination
  • Unable to keep medications or fluids down
  • Unexplained abdominal pain or pain over the transplant site
  • Weight gain of three pounds in 24 hours or five pounds in one week
  • Redness, swelling, pus or an open area at the transplant site.

During the day, Monday through Friday, patients are encouraged to call their transplant coordinator. After hours on weekends and holidays, there is a nurse triage line for patients to get in touch with the transplant team for urgent needs. 

After receiving a transplant, patients will have frequent clinic appointments. For the first month, patients will come to the clinic once a week. At months 2 and 3, patients will be seen every other week. Then for months 4 through 12, visits will be once per month. This is a standard schedule. It is important to know, however, it can be modified based on a patient's individual needs. 

During the first visit, the patient and their support person will meet with a transplant coordinator, transplant nephrologist, transplant surgeon and transplant pharmacist. Patients will also have access to the transplant social worker, financial coordinator and dietitian at any time. Patients must bring their transplant booklet and their yellow medication card along with their pillbox and pill bottles to their appointment. 

At one month, an additional appointment will include going to the urology department for removal of a stent that is placed in the ureter at the time of transplant. A ureter is a passageway for urine to leave the kidney and empty into the bladder. A stent is placed there to prevent blockages and to promote healing. Patients' lab work or blood draws will coincide with most of their appointments. Keep in mind, this schedule may vary based on an individual need. 

Labs will be drawn two times weekly for the first month, then weekly for weeks 5 through 7, then every other week 2 to 3 months post transplant and every month 4 to 12 months after transplant. Having blood drawn is one of the ways the transplant team monitors the function of the new organ. Routine labs include a basic metabolic panel which measures kidney function and electrolytes; magnesium which measures the level in the blood important for muscle and nerve function; phosphorus which measures the level in the blood important for bone health; a complete blood count which measures blood counts to monitor for anemia, infection and bleeding issues; and finally, immunosuppression medication levels to prevent rejection. 

Immunosuppression levels will indicate if the drug levels in the blood are too high or too low or just right. If the levels are too high, there is a risk of drug toxicity that will damage the kidney or lead to an infection. If the levels are too low, there is risk of rejection. This is why it is so important to have the lab draws in the morning before taking the morning medications. Most immunosuppression levels are drawn in the morning, 12 hours after the nighttime dose. Please know that it is normal to see frequent changes to the immunosuppression medications in the early months after transplant. Abnormal lab results can lead to additional testing, medication adjustments or even a visit to the clinic, emergency room or an admission to the hospital. 

Managing care following a transplant is just like managing a chronic illness. As discussed previously, there are frequent appointments with the transplant team and blood draws. There are other common interventions that many patients may experience after receiving a transplant. These interventions include possible IV infusions to correct low blood levels of magnesium or phosphorus — this would be done at an infusion clinic; an ultrasound or CT scan of the transplanted organ or the native kidneys. 

A biopsy of the transplanted organ may be needed if there is concern for rejection or a return of the kidney disease the patient had before the transplant. Some patients may experience what's called delayed graft function. That means the transplanted kidney is a little slow to wake up. This can be for many reasons. Patients who experience this may need dialysis for a little while until the kidney starts to function normally. If this happens, the transplant nephrologist will contact the patient's dialysis center to let their nephrologist know that the patient will need dialysis. The transplant team will monitor blood levels, weight and urine output to determine the need for dialysis. 

Acute rejection is another potential complication after transplant. It can be defined as an increase in blood creatinine and can include pain and tenderness at the transplant site, as well as chills, nausea or fatigue. An infection would be another unexpected complication after transplant. Infections can be identified by a high white blood cell count, fever, swelling, pus, tenderness or an open area at the transplant site. 

Chronic rejection is a slow decline in the function of the transplanted organ. It can be caused by a development of unwanted antibodies a person's body produces that attack the transplanted organ, noncompliance, uncontrolled diabetes, uncontrolled high blood pressure or the recurrence of the disease the patient had prior to transplant. 

There are several blood tests available that help to determine whether there is a concern for possible rejection. The transplant team will order these tests when it is indicated. If there is concern for rejection, a biopsy would be ordered. 

A biopsy is a procedure where the needle is inserted through the skin into the transplanted kidney to obtain a sample of the kidney tissue. A patient will be in the procedural area for 4 to 6 hours to rest and be monitored for bleeding complications. They are then discharged home. Results will be communicated to the patient by their new transplant coordinator along with a plan of care. The plan of care may include starting new medications, adjusting the current medications or a procedure called plasmaferesis. 

Plasmaferesis focuses on filtering out the bad antibodies the body produces to attack the transplanted organ causing the rejection. There may be times when the transplant team just wants to monitor the kidney function closely and not order any treatment. 

The best way to prevent rejection is to follow all of the instructions from the transplant team. Their guidance will help patients keep their transplanted organ healthy for as long as possible. Taking medications as prescribed, communicating to the transplant coordinator at the first sign of an issue, coming to all clinic appointments, having labs drawn when instructed and making sure the support person is involved in the recovery period. 

Long-term health maintenance is very important in regards to overall health and well-being. All patients must have a primary care provider to manage areas of health that are not related to the transplant. A primary care provider will ensure patients are up to date with their immunizations; manage blood sugars and insulin use; monitor bone health and manage supplements; manage blood pressure, including the blood pressure medications; manage cholesterol and prostate levels; perform Pap/pelvic exams; order colonoscopies and mammograms, when applicable. A primary care provider can order a dermatology consult for annual skin cancer checks. They can also encourage the patient to see a dentist yearly to promote good oral health. 

If there are any questions please write them down and share them with the transplant team. We encourage you to continue watching the rest of the educational videos on kidney and pancreas transplant. Feel free to share these videos with your support person, family and friends.