Whether you’ve recently had a successful kidney transplant or are considering a kidney transplant, you may be wondering “What can I do to best care for my donor kidney after surgery?”
Proper care of your kidney transplant is a lifelong process. You will need to take care of yourself and actively monitor your health. You will also need to be aware of signs and symptoms that should be reported to your transplant team immediately. The more you know, the more power you have to keep you and your donor kidney healthy.
Below are some important tips to ensure you are engaged in the health and management of your kidney post-transplant!
Make sure you have a support team
It is important to identify your circle of trust, and establishing a support team before your transplant surgery can be helpful. Perhaps you leaned on a support team when you were first diagnosed with kidney disease. It is important to maintain a support team during your transplant journey, as getting a transplant can be an emotional experience.
Make a list (on paper or mentally) of those most important to you in the recovery process. It may be people that are obvious, like your spouse, children, or other immediate family members, or it may be a close friend, neighbor, co-worker, or spiritual leader/guide. Share your thoughts and feelings with these individuals and consider bringing one of them to your follow up appointments to help remember everything your healthcare team tells you and to also remind you (and encourage you) to ask questions that are important to you.
The hospital stay post-transplant surgery is usually 3-5 days if there are no complications with most people being able to return to work after four weeks (depending on the type of work they do as strenuous activity and heavy lifting are not recommended for the first six months). However, beyond physical recovery, it’s important to understand that you may need time for mental recovery as well. Have a discussion with each of your support team members so they know what you need and how they can best support you.
Keep taking your anti-rejection medication as prescribed
Most complications happen soon after your transplant and if they are identified early, they may be reversible. You will be prescribed anti-rejection medications, also called immunosuppressant medications, immediately after your transplant surgery. You must take them as prescribed. These medications are prescribed to prevent your immune system from attacking (rejecting) your new kidney.
There are 3 different categories of immunosuppressive medications: induction, maintenance, and rejection.
- Induction: medications that are used right before your transplant surgery in the operating room and immediately after your surgery
- Maintenance: medications to be taken every day for as long as you have your transplanted kidney. Examples of maintenance medications include:
- Tacrolimus (Prograf) or cyclosporine (Neoral, Gengraf) (Calcineurin Inhibitors)
- Mycophenolate mofetil (CellCept), Mycophenolate sodium (Myfortic and Azathioprine (Imuran)(Antiproliferative agents)
- Sirolimus (Rapamune), Everolimus (Zortress) (mTOR Inhibitor)
- Prednisone (Steroids)
- Rejection: medications that will be used during a time of rejection
While immunosuppressant medications prevent your body from attacking your new kidney, they also make it challenging for your body to fight off infections such as viruses, bacteria, and fungi. Because of this, you will also be prescribed separate medications immediately after your transplant to prevent infections. These anti-infective medications are typically prescribed from 3 – 6 months after your transplant to give your immune system time to begin protecting itself from infections. Your transplant team will tell you how long you will need to take the anti-infective medications.
It’s important to know that you will need to take medications for the rest of the life of the transplanted kidney, though over time the doses and types of medications may change. If your health insurance ever switches a name brand drug to a generic drug without your express permission, notify your healthcare team immediately so they can determine if the generic drug is right for you.
Common side effects of transplant immunosuppressant medications include:
- Appetite changes
- Weight gain
- Increased blood pressure
- Increased cholesterol
- Hair loss/growth
- Acne
Inform your healthcare team if you experience any uncomfortable side effects. Your healthcare team may be able to adjust your medications to ease side effects.
In 2020, the United States Congress passed the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act which, beginning in 2023, indefinitely extends Medicare coverage of immunosuppressive medications for kidney transplant recipients. This Act was passed thanks to the tireless efforts of patient advocacy groups, care partners, living donors, and kidney patients like you. Click here to learn more about the passage of this important act, and see our list of Additional Resources below for a link to Medicare’s web page on the Immunosuppressive Drug benefit.
Keep all your appointments and have all needed lab tests
The leading cause of rejection is not taking your immunosuppressive medication as prescribed. Aside from taking medications as prescribed, it’s important to keep all follow up appointments and lab appointments as directed by your transplant team. Immediately after your kidney transplant, your transplant team will follow you closely. You may be asked to come in weekly for the first few months. As time goes on, your follow up appointments will become less frequent to the point where they may become once a year. However, if you ever have a concern about the health of your transplanted kidney, think you are experiencing signs/symptoms of rejection, are prescribed a new medication from another healthcare provider, require surgery, or experience another major health issue (such as heart disease, cancer diagnosis, etc.) it’s Important to contact your transplant team.
To learn more about effective communication with your healthcare team, check out AAKP’s OnDemand session “How to have effective dialogue with your healthcare team.”
Inform your transplant care team as soon as possible if you are experiencing any of the following:
- Fever
- Sores
- Infections (urinary, respiratory, gastrointentinal)
Mental health after transplant
It will be important to prioritize your mental health as it is normal to have some struggles after your transplant. Having a kidney transplant is an emotional experience, and guilt is a very common emotion you may feel after your transplant.
Some people find it very stressful and feel guilty or depressed that an individual (whether living donor or deceased donor) gave their kidney to them. They may feel overwhelmed by all the changes including how to care for the kidney, or they may be concerned that the kidney will fail.
Individuals may also experience anger if the donor kidney is not working well immediately and sometimes post-transplant medication can change your mood, while others may feel overjoyed to receive the gift of life and are optimistic about the future. It’s important to understand that all these emotions are normal. AAKP’s Coping, Living, and Thriving with Kidney Disease is a great tool to help guide you through your emotions, regardless of what stage of kidney disease you are in or what treatment you are currently on.
Depression is one of the most common side effects of chronic kidney disease. For many after transplant, they may feel pressure to always be happy and that they do not have the right to complain about what they are going through because they received a kidney. Individuals can develop depression after a transplant without having a previous mental disorder or feelings of depression.
If you have an underlying mental health disorder before transplant (i.e. depression, anxiety, bipolar disorder, etc.), it is important to know the immunosuppression medications you will be taking may exacerbate these conditions. Be certain to establish a relationship with a mental health provider and maintain that relationship before and after your transplant. Maintaining good emotional health will also help your kidneys do well.
Other challenges could be coping with or processing what you had to endure before your transplant, like the years you spent on dialysis, numerous stints in the hospital, or feeling like a burden to your family. Having to isolate due to being immunosuppressed (your immune system becomes suppressed when you take your anti-rejection drugs so your body does not reject your new kidney) can affect mental health as well.
Often the feelings you may be struggling with are not as obvious to others so please ask for help! Remember your transplant team is available to help.
Consider connecting with others who have been in your shoes. View AAKP’s list of independent support groups that are held locally as well as virtually to reach out and get started. AAKP also hosts regular HealthLine webinars on various topics, including Mental Health and Well-being. Click here to register for upcoming webinars and to watch recordings of past webinars.
Daily self-care tasks to protect you and your kidney
The following list of tasks can help protect you and your new kidney, particularly in your first days, weeks, and months of transplant.
- Follow a kidney smart diet that is right for YOU
- Take your temperature daily
- Weigh yourself daily
- Know your blood pressure and blood sugar goals
- Maintain normal cholesterol levels
- Drink alcohol only in moderation
- Avoid tobacco use
- Speak with your healthcare provider before taking any over-the-counter medication
- Avoid herbal supplements
- Wear sunscreen daily and have annual skin checks
- Move your body every day by engaging in physical activity
- Avoid excessive weight gain
- Document your weight, temperature, blood pressure, and for those who need it, blood sugar, daily, as your transplant team recommends.
- Become involved with an education/advocacy organization like AAKP for information and support.
Adopt a healthy diet
Many people think after having a kidney transplant, they can go back to eating whatever they’d like, but kidney-friendly eating still plays a big role after a transplant. After a kidney transplant, many individuals will need to follow a diet low in salt and high in fiber. A balanced diet including lean meats, a variety of fresh fruits and vegetables, reduced-fat dairy products, whole grains, and plenty of water will help you maintain a healthy weight and promote overall wellness. Each person is different, so even with a kidney transplant, you may be asked to follow additional dietary restrictions. If you have any questions on how to modify your daily eating, schedule time with a kidney dietitian. You can find a dietitian close to you, that specializes in kidney disease, by visiting www.eatright.org and click on the “Find an Expert” button.
It is also recommended that transplant recipients avoid certain foods that are raw or at a higher risk for bacteria including raw or uncooked meat, poultry, fish, sushi, oysters; unwashed fruits or vegetables; as well as unpasteurized dairy products.
Avoid grapefruit if you are taking the immunosuppressant medication tacrolimus.
You will need to avoid the over-the-counter supplement St. John’s wort, and other herbal supplements as they may cause the levels of your immunosuppression medications in your blood to increase or decrease. Please talk to your transplant team before taking any over-the-counter supplement or new medication.
The Centers for Disease Control and Prevention (CDC) has a great resource on “Safer Food Choices for People with Weakened Immune Systems” and AAKP’s Delicious! recipe series and Nutrition Counter are also great resources.
Start an exercise program
There are no real restrictions on physical activity after your transplant. However, if you do play a contact sport, you will want to take precautions. Exercise and moving your body are an important part of a healthy lifestyle. Typically, 20-30 minutes of activity daily is recommended and that does not have to be at the local gym. Check with your healthcare provider before beginning any exercise program and know that even brisk walking is a great way to get moving and stay healthy!
Mindful movement is encouraged as an introduction or re-introduction to exercising. Start small like simply parking the car further away from the entrance to the grocery store or taking the stairs instead of the elevator.
Exercise is whatever is fun to you as an individual. It doesn’t have to be strenuous or take place in the gym. It could be walking in nature or dancing with friends. If you do go to a gym, wear a mask if it’s crowded, be sure to sanitize all equipment and benches before using, wear workout gloves for less contact with surfaces, and consider wearing long sleeves and bottoms so skin doesn’t touch gym surfaces. Wash your hands and be sure to sanitize things like your water bottle or protein bottle. Use a filtered water machine, if available, instead of a water fountain.
Other precautions to take while immunosuppressed
Individuals with a kidney transplant must take anti-rejection medication (also called immunosuppressive medication) for the life of the transplanted kidney. This medication suppresses (or weakens) your immune system so your body does not attack (reject) the transplanted kidney; it also means that you will be at a high-risk for infections and viruses.
Consider carrying with you a kit that contains basic first aid items like antibiotic ointment and bandages, as well as masks, hand sanitizer, gloves, and wet wipes to help prevent infection.
Receiving vaccines, as determined appropriate by your transplant team, is very important. Generally, transplant recipients should avoid “live” vaccines or being near anyone who has recently received a “live” vaccine. It is also important to practice good hygiene, such as frequent hand washing, use of hand sanitizer when you may not be able to wash your hands, wearing a face covering in crowded places during high risk times of the year such as flu season, avoiding individuals who are sick, and practicing any other risk mitigation strategies shared by your transplant team and the Centers for Disease Control and Prevention (CDC).
Monitoring the health of your transplant
There are several ways your transplant team will monitor the health of your transplant. Early recognition is a key to preventing rejection.
Blood tests
- Creatinine level: A blood test, known as creatinine level, is a test that may be elevated when kidney function is declining. However, the creatinine level is less specific and provides a less accurate understanding of how your kidney is doing. Increases in creatinine can often lag kidney injury, meaning that there can be a significant loss of kidney function before creatinine rises.
- Donor-derived cell-free DNA: A newer blood test, a donor-derived cell-free DNA test (dd-cfDNA), can detect if something is wrong with your kidney earlier than other tests. Similar to creatinine, it can track changes to your kidney function over time. If there is injury to your kidney, there will be a higher level of donor DNA in your blood. The dd-cfDNA test is significantly more accurate than creatinine testing and is able to provide information to your transplant team up to a median of three months before one traditional test is able to detect kidney issues. Be sure to ask your transplant team whether this test may be beneficial for monitoring your care!
- Biopsy: A kidney biopsy can also be done to assess for rejection but is invasive and can involve a lengthy process. The most common complication of a kidney biopsy is bleeding.
How do I prevent rejection?
Take your anti-rejection medication at the same time, every day. Do not miss any doses of your anti-rejection medication. If you do miss a dose, contact your transplant team immediately. Taking the immunosuppressant medication at the same time of the day helps to keep the levels of medicine in your body stable. If your levels get too low or too high, you may be at risk for a rejection episode. Be sure to attend all of your appointments and have all of your scheduled blood work done as ordered. Your blood levels are monitored very closely and are useful when managing the amount of immunosuppressant medications you need to take. It is not unusual that your immunosuppression medications will need to be adjusted from time-to-time. If you are experiencing any unpleasant side effects, notify your transplant team. Your transplant team will determine any adjustments needed based on the levels obtained during your blood draws. It is extremely important that you do not adjust these medications on your own. Most rejection episodes can be reversed if detected and treated early.
If you experience any of the below, which may be signs of rejection, notify your transplant team immediately.
- Flu-like symptoms (chills, body aches, headache, nausea)
- Pain, tenderness over the transplanted kidney
- Fever of 101°F (38° C) or higher
- Decreased urinary output (peeing less than usual)
- Pain or burning sensation while urinating
- Sudden weight gain (fluid retention)
- Extreme fatigue
If you are experiencing a rejection episode, know that this does not automatically mean your kidney will fail! Early recognition and treatment are key to preventing rejection. The type of treatment you receive will be dictated by the type of rejection you are having and may require an adjustment of the immunosuppressant medications you are taking.
- Stay in close contact with your transplant team
- Take your medications as prescribed
- Keep your appointments
- Have regular blood tests
- Stay engaged by connecting with other kidney transplant recipients and lean on education/advocacy organizations like AAKP for information and resources
Sexual health and intimacy after transplant
It is not widely discussed (though it should be), but sex, intimacy, and self-image are major concerns in the kidney community. This is a sensitive topic which many do not address due to shame, cultural, religious, or other reasons, and it is a complex issue that not only affects the individual, but their significant other as well.
You may find that after your kidney transplant, your overall health improves, and you have more energy that promotes an increased libido and desire for intimacy. Once your transplant team gives you clearance, you and your partner should feel comfortable resuming sexual activity.
Intimacy is also feeling comfortable in the body you are in. How one feels after receiving a transplant may be different from how they felt before the transplant, that it makes one uncomfortable. One may also feel uncomfortable or self-conscious about their scars and overall appearance. This is normal. If you have these feelings, you may not feel ready to be intimate with someone which could potentially cause conflict with your partner. It is important to communicate each other’s feelings and be able to work through it together or consider couples counseling for additional support.
If you lack a desire for intimacy, do not hesitate to discuss with your healthcare providers, including your transplant team, as there are treatment options available. Talk to someone who you are comfortable with, like a healthcare professional, sex therapist, or counselor.
Pregnancy after transplant
It is safe and possible to become pregnant after your kidney transplant. Typically, it is recommended you wait one full year after receiving your transplant before getting pregnant. For those who are sexually active, it is recommended that birth control or protection is used to prevent pregnancy during this time. It is imperative that you discuss your pregnancy plans with your transplant team as your immunosuppression medications will need to be adjusted to prevent harm to the baby. You will also need to be followed by a high-risk obstetrician during your pregnancy.
Caring for animals and pets after transplant
It is undeniable that pets make amazing companions and bring lots of joy to the family. After your transplant, you will have a weakened immune system and will need to take extra precautions if you or someone you live with has a pet. Birds are a higher risk pet because their droppings can carry germs that may cause serious lung infections.
Some steps you can take to reduce the risk of getting sick from a pet:
- Avoid handling animal feces. If you can’t avoid handling the animal feces, it is recommended you wear gloves.
- Wash your hands with soap and water after handling animal feces.
- If possible, avoid cleaning litter boxes and keep your cat indoors.
- If possible, avoid cleaning litter boxes and keep your cat indoors.
- Avoid cleaning bird cages. If there is a bird in your home, it would be best if the cage was in a room you do not typically enter.
- Avoid cleaning fish tanks. It is possible the germs that fish carry can contaminate the water. Avoid reaching into the tank if you have open wounds or abrasions on your hands.
- Be certain your pet is up-to-date on vaccinations.
- Avoid wild or stray animals.
- Avoid bringing stray animals into your home.
- High risk animals include: reptiles, rodents, and baby chicks.
- If you are thinking of adopting or getting a new pet after your transplant and have further questions, remember to ask your transplant team.
The CDC has an informative web page on how people with weakened immune systems can safely care for pets, located here.
Pursue your Aspirations!
Kidney disease is a medical condition that affects all aspects of your quality of life. Kidney disease should not define you, and your treatment option should support your life aspirations, goals, hopes, and dreams. Do you want to pursue or complete a degree or certification in a career or trade, pursue a profession or vocation, maintain work in a full-time or part-time capacity, own a business, travel, start a
hobby, write a book, start or provide for a family, own a home, or retire securely? It is not too late to pursue a goal or aspiration.
Discuss with your healthcare team and other members of your circle of support (like family, friends, spiritual leaders, co-workers, etc.) how a kidney transplant can impact your aspirations, goals, hopes, and dreams. Try not to compare yourself to others, especially fellow kidney patients. Each individual journey is unique. Give yourself compassion and grace during this new chapter in your life. Embrace this new chance at life and enjoy it!
This AAKP patient education web page is supported by CareDx, Inc. The educational content shown is unbranded and unbiased and has not been determined or influenced by any sponsor. It is intended for educational purposes only.
