Table of Contents
Introduction
For transplant patients, the journey doesn’t end with a successful surgery. It is just the beginning. It is very important to understand and commit to three requirements to keeping this new organ healthy in your body:
- Medications: taking the drugs your doctor prescribes exactly as directed
- Monitoring: taking notes and tests to monitor what is going on inside your body
- Care plan: visiting your doctors regularly
Understanding the critical aspects of managing your new transplant is very important. And it is also important to think about you and how you feel. Your quality of life, including your mental health, diet and exercise, will all change – in many ways for the better. But there are differences. Additionally, it can be expensive to manage your transplant even with insurance. Read below to learn about how to have the best chance to manage your transplant journey successfully.
Medications
Your immune system is critical in protecting you from infections and serving in many other important functions day to day. When you receive a transplanted organ, your body sees this new organ as a “foreign invader” and activates a strong immune response to remove the threat, which would result in rejection of the organ without modern transplant medicine. One of the critical aspects of post-transplant care is the use of immunosuppressants. These medications
are vital in preventing the body’s immune system from rejecting the new organ. Understanding the types, functions, and importance of these medications, as well as the challenges in managing them, is crucial for transplant recipients.
Types of Transplant Medications and Their Functions
Transplant medications fall into several broad categories. The overarching purpose of all transplant medications is to prevent rejection of the transplanted organ by your immune system. These medications work by either directly preventing the activation of certain immune cells or by preventing the growth and spread of immune cells.
In recent years, advances in transplant medicine and these transplant medications, known as immunosuppressants, have led to longer survival and significantly lower rates of rejection. However, these immunosuppressants also cause common side effects. Thus, while on these medications, it is important to monitor for side effects.
| Commonly used medication | Function | Common side effects |
| Calcineurin inhibitors (CNIs) Example: cyclosporine, tacrolimus | Inhibits the activity of calcineurin, a protein that activates T-cells, a critical part of the immune system that adapts and attacks “foreign”. |
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| Antiproliferative agents Example: mycophenolate mfetil (MMF), azathioprine | Inhibits the proliferation of immune cells. |
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| mTOR inhibitors Example: sirolimus, everolimus | Inhibits mTOR, a protein involved in cell growth and proliferation. |
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| Steroids Example: prednisone | Reduces inflammation and suppresses the immune system on a DNA level. This is a very powerful, effective, and commonly. |
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Other commonly reported side effects of some of these immunosuppressive drugs are appetite changes, general gastrointestinal issues like nausea, and changes in metabolism or weight.
Furthermore, these immunosuppressive drugs are often prescribed as a regimen (multiple drugs simultaneously), and patients have reported psychological fatigue from taking multiple medications daily. Lastly, these medications may interact with other drugs or food, so nutritional or dietary changes may be necessary
Monitoring and Screening
Screening after receiving a transplant is mainly centered around monitoring for side effects and organ rejection. Screening is crucial for recovery and long-term care, because both rejection and side effects are easier to manage when caught early.
Screening for Side Effects
The most important and concerning side effect of immunosuppressant therapy is infection.
| Timing of infection | Most common type of infection |
| Early-onset infection, defined as within 1 month after transplantation | Hospital-associated infections, like surgical site infection or urinary tract infection. |
| 1-6 months after transplantation | You are more susceptible to viral and fungal infection that don’t normally affect healthy people. These infections can be severe in patients on immunosuppressant therapy. Examples:
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| 6-12 months after transplantation | You are similarly susceptible to viral and fungal infections that particularly affect patients that are immunosuppressed. |
| >12 months after transplantation | The types of infections are relatively similar to everyone else. However, these infections will be more severe and spread more quickly given the long-term effects of immunosuppression. |
How do you prevent these infections?
- Hygiene Practices: Regular handwashing, avoiding crowded places, and wearing masks when necessary. Transplant recipients are not only more likely to get infections, but also to have more severe infections.
- Prophylactic Medications: Some patients may be prescribed daily antibiotics, antivirals, or antifungals to prevent infections.
- Vaccinations: Keeping up with recommended vaccines, though some live vaccines may not be suitable1. See here for a guide to vaccination after kidney transplantation. [ADD LINK instead of footnote?]
- Routine blood tests and clinical evaluations: Immunosuppressant medications can cause very low levels of blood and immune cells. Regular monitoring can help detect infections early.
Screening for Rejection
After transplant, it can be an emotionally and logistically challenging time. However, as soon as you receive the transplanted organ, your immune system is activated. Over time, if the immune system is not adequately suppressed by transplant medications, this will cause rejection and loss of the transplanted organ. Screening for rejection varies based on the organ and your transplant team. Some general screening measures are below:
| Screening | Purpose | Timing |
| Self-monitoring vital signs (temperature, blood pressure, and weight) | Similar to monitoring for symptoms, reporting any changes to your transplant team as soon as you notice them can be crucial in catching early signs of rejection or side effects. | Depending on the transplant team, they may ask you to monitor your temperature, blood pressure, and weight daily at home. |
| Blood tests | Test the function of the transplanted organ and identify problems early. | Consult your medical team for specific scheduled blood work and other tests, as they have a better understanding of your transplant needs. Key blood tests and what they measure are listed. Other blood tests that may be checked regularly include:
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| Complete blood count | White blood cells are the immune cells. If they are high it may indicate an active infection. If they are low, it indicates a lowered defense against infections. | |
| Kidney function tests | The two key blood tests are the levels of creatinine and blood urea nitrogen (BUN), waste products that are removed by the kidney and reflect kidney function. | |
| Electrolytes | This test measures the dissolved levels of naturally occurring electrolytes (potassium, sodium, calcium, etc..), which are monitored and repleted when necessary. This can reflect nutrition or point to other problems more generally. Certain transplant medications also affect the level of electrolytes. | |
| Imaging (renal ultrasound) | This is a non-invasive diagnostic test that uses sound waves to image the organs. It can be used to check the main blood vessels around the organ, and visualize any abnormal fluid build-up, any obstruction, or to help guide future biopsy. | Imaging is not always a part of routine screening. It can be used to help diagnose rejection, but a biopsy is required for definitive diagnosis. It is often used when there are changes in the routine blood tests that need further workup. |
| Scheduled protocol kidney biopsies | During a kidney biopsy, a small sample of the transplanted kidney tissue is taken with a small needle, and tested for signs of rejection. Biopsies are considered the gold standard for evaluating any damage to the transplanted organ. However, biopsies can only detect rejection symptoms that are present at the moment, so it is important to consult your transplant team if you experience any symptoms of kidney rejection between scheduled visits. | 3-6 months post-transplant, and 1 year post-transplant, and if there are concerning rejection symptoms or labs. |
1 https://www.kidney.org/atoz/content/vaccinations Krueger KM, Ison MG, Ghossein C. Practical guide to vaccination in all stages of CKD, including patients treated by dialysis or kidney transplantation. American Journal of Kidney Diseases. 2020 Mar 1;75(3):417-25.
Care Plan
After transplant surgery, the transplant clinic will be your primary source for direction on all upcoming visits for the next 6-12 months. Below is one example of how frequently you will visit the transplant center over the first year, but each transplant center has their own system for how it manages patients.
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At routine clinic visits, any symptoms you may be experiencing (change in urine color or quantity, swelling in the body, fever or general feelings of malaise) may be early signs of rejection, so it is very important to keep notes of any changes you experience between visits and report them. As well it is critical to know what changes would be important enough to require an immediate call or visit to the transplant center.
At some point in or just after the first year post-transplant, a patient is generally referred back to the nephrologist (for kidney transplant) as the primary doctor overseeing care. This nephrologist will continue to order tests used to monitor the function of your organ. As with the transplant center visits, it is also critical to note and report any changes that you notice between visits.
Additionally, continuing routine primary care visits is essential for maintaining health beyond the transplanted organ. In addition to monitoring health in general, they can offer psychological support.
Do ask the transplant team about any specialists they might recommend you see, such as a dermatologist for skin cancer screening, or a cardiologist to monitor the functioning of your heart.
Cancer screening
In recent years, with advancements in organ transplantation, organ transplant recipients are living much longer. With that comes an increased risk of developing cancer, with studies showing a two to four-fold increase in risk of cancer. It’s not well understood why transplant recipients are more likely to develop cancer, though it is well known that factors that change the immune system, such as immunosuppressant medications, can affect the development of cancer. The most common cancer to develop is non-melanoma skin cancer, which is usually easily treated and cured. Early screening and detection of cancer is crucial. Screening guidelines may vary, so you should consult your transplant team for cancer screening recommendations. Many of these recommendations are similar to cancer screening guidelines in the general population. General recommendations for cancer screening are below2:
| Type of cancer | Screening recommendation | Timing |
| Breast | Mammogram | Every 2 years for women older than 50 years old |
| Colorectal | Fecal occult blood test (FOBT) OR | Annual or biennial for everyone over 50 years old |
| Colonoscopy | Every 10 years for everyone over 50 years old | |
| Cervical | Cytological screening (Pap smear) | Every 2 to 3 years in women over 21 years old |
| Prostate | Lab test for prostate specific antigen (PSA), an early marker for prostate cancer AND a digital rectal exam | Annual in all men over 50 years old |
| Hepatocellular (Liver) | Lab test for alpha-Fetoprotein, a marker for hepatocellular carcinoma AND a liver ultrasound | Every 6 months in high-risk individuals (heavy alcohol use, cirrhosis, chronic liver disease) |
| Skin | Self-skin examination AND | Every month after receiving transplant |
| Total body skin examination by expert physician or dermatologist | Every 6-12 months after receiving transplant |
2 Acuna SA, Huang JW, Scott AL, Micic S, Daly C, Brezden-Masley C, Kim SJ, Baxter NN. Cancer screening recommendations for solid organ transplant recipients: a systematic review of clinical practice guidelines. American Journal of Transplantation. 2017 Jan 1;17(1):103-14.
Quality of Life
Many organ transplant recipients experience a significant difference in quality of life after transplant. Transplantation can be life-changing, with commonly noted positives such as enhancing physical wellbeing, freedom from dialysis or frequent hospital visits, and extended lifespan. However, the journey does not end with surgery. Many factors such as mental health and social support contribute to post-transplant recovery and quality of life, and need to be
monitored.
It is helpful to understand what you might see in your journey ahead. Read below for a summary of common changes people experience, and find other transplant patients who are further along in the journey to learn about their experiences:
| Commonly noted positive changes | Commonly noted negative changes | |
| Physical health and wellbeing | Improved organ function: Successful transplantation restores organ function, significantly improving physical health. This can decrease hospital visits and the severity of chronic illness. Energy: Many recipients describe improved energy and increased capacity for physical activity. Sleep and appetite: Many people report having better appetite and sleep after transplant. Living with a chronic illness can take a significant toll on your day-to-day health, which is only noticeable after transplant. | Pain and discomfort: Pain after surgery is expected, and your transplant team will provide medical management for post-transplant pain. Persistent pain or new pain may be a sign of rejection or infection, and should be brought up with your transplant team. Medication side effects: See above. |
| Mental health | Emotional response: Patients experience a range of emotions, from relief or gratitude to anxiety or depression. Emotional responses to transplantation and the change to quality of life are common and valid. Emotional support is crucial to navigating this period, and you should seek help if needed. | |
| Freedom from the hospital: A commonly quoted positive change is freedom from frequent doctor’s visits or dialysis sessions that can be a burden on mental health. | Cognitive function: Surgery and the post-transplant recovery can be a stressful time, and affect things like short-term memory or attention. Certain transplant medications also can affect cognitive function. Monitoring and addressing these changes are crucial. | |
| Return to function: For some patients, transplant can improve physical wellbeing such that they can return to daily activities, hobbies, or work. This can provide a sense of normalcy. | Pill fatigue: Some patients report that complex post-transplant medication regimens can cause anxiety or fatigue, called “pill fatigue”, especially given how long you need to take the pills for. Consult your transplant team and pharmacist as needed, to help simplify or address these feelings. Also try asking other transplant patients how they manage to take their drugs. You are not alone! | |
| Social support | Support networks: Support from loved ones can significantly impact quality of life after transplant. Transplant recipients often find that after transplantation they have more time and/or energy with their loved ones. Positive relationships provide emotional and practical support during recovery. | Caregiver burnout: Transplantation is a journey that requires logistical and emotional support from a caregiver(s), such as transportation to appointments or help with daily activities such as cooking or cleaning. This can be physically and emotionally taxing for a caregiver. |
| Financial | Transplantation tends to decrease the lifetime cost of living with a chronic disease. Commonly cited benefits include fewer and lower cost of hospital visits and less working time lost. | The post-transplant recovery has its own associated costs, such as medications and transplant check-up appointments. See below for more information on navigating insurance, pharmacy, and finances associated with transplant. |
Note Taking
It i important to always be prepared with notes from what your body has been doing since your last visit. As well, make sure to ask questions at each visit to prepare you for the next few days, weeks or months
- Ask about diet
- a. What foods may interact with your medications?
- b. What is a good diet for recovery at this stage of my journey?
- c. What foods should I aware of to protect my transplanted kidney?
- d. What is a healthy diet for my overall health?
- Ask about exercise
- a. When can I start exercising?
- b. What kind of exercise do you recommend, and how often?
- Ask about medications
- a. Bring up anything that you have issues with: side effects, timing of medications,
cost of medications
- a. Bring up anything that you have issues with: side effects, timing of medications,
- Ask about other doctor visits