After a long wait on the transplant list, you finally get your transplantation surgery. You immediately start to feel better, but suddenly you notice some tenderness over the transplant site. You may even begin to experience flu-like symptoms such as fever, chills, and body aches. While this could be an infection, it could also be a sign of organ rejection.  

Rejection is a terrifying word that may cause feelings like fear and worry. But don’t panic too quickly. Rejection doesn’t always mean that you will lose the transplanted organ or that it is failing. In fact, most people who have organ transplant surgery will experience one episode of acute rejection within the first year after a transplant. 

What is Organ Rejection? 

Organ rejection occurs when the immune system recognizes the transplanted organ as a foreign object and attempts to protect the body by attacking it.  

There are three main types of organ rejection: 

1. Hyperacute rejection is caused by mismatched antibodies, meaning the antibodies of the donor organ were completely different from those of the recipient. It typically happens within minutes and up to a few hours after transplantation and will cause the organ to no longer be viable. Because of precautions taken to ensure proper matching, this type of rejection is extremely rare but can happen in some cases.  

2. Acute rejection is the most common form of organ rejection that can happen anywhere from one week to three months after transplant surgery. This type of rejection typically happens when the body treats the organ like a foreign object and attacks it, similar to the way it attacks a virus or bacteria. Acute rejection is treatable using medications.  

3. Chronic rejection is less common than acute rejection and takes places over several years after the transplant surgery. This kind of rejection can be more dangerous because the body is constantly attacking the organ, resulting in damaged to the organ that gets worse over time. It’s more difficult to treat because the body can develop antibodies against the organ. Any diseases can also weaken the immune system and trigger an episode. Often, people with chronic rejection have to get a second transplant.  

Rejection can occur at any time after a transplant, so it’s important to be aware of the signs of acute and chronic rejection. While there will be some symptoms that are specific to certain types of transplants, like less urine for those with a kidney transplant, there are some common symptoms among all transplants. Signs of transplant rejection include: 

• Tenderness or swelling over the incision site 
• General discomfort or feeling unwell 
• Flu-like symptoms such as chills, body aches, nausea 
• Sudden weight gain 

If you start to experience these symptoms at any time after your transplant, it’s important to tell your doctor right away. Your doctor will then examine the area around the transplanted organ and do a full physical exam. They will also run lab work and may perform a CT scan, x-ray, or ultrasound of the organ to determine if you are rejecting the organ. Once your doctor has determined the status of the organ transplant, they will provide you with the right course of action.  

How Does the Immune System Impact Transplants? 

The immune system plays a primary role in the human body. It’s responsible for protecting the body from viruses, germs, and diseases, and aiding in the healing process. Without the immune system, the body would not be able to fight off most minor bacteria or a small cold, let alone a severe illness like pneumonia.  

Immune systems generally can’t keep foreign invaders out, but it is incredibly efficient in fighting them off.  To protect the body, the immune system needs to identify what belongs in the body and what is foreign and fight it off. The immune system can be activated by many different things that the body doesn’t recognize as its own, even an organ. 

Antigens are substances that activate the immune system. They include the proteins on surfaces of bacteria and diseases. When antigens attach to immune cells, a series of processes are triggered to let the body know there is an invader. The first time the body comes in contact with a specific antigen, it stores information about that antigen, like how to fight it. This is how the body builds immunity to certain illnesses and diseases.  

The body’s cells and organs have their own proteins on the surface, too. Because the body recognizes these as proteins that belong, it doesn’t try to attack or fight them. However, the immune system can mistake the body’s own, healthy cells as foreign cells and attack them. This is what happens when the body rejects a transplanted organ.   

What Triggers Organ Rejection? 

When an organ is transplanted from one person (the donor) to another (the recipient), the United Network for Organ Sharing (UNOS) carefully matches donated organs with transplant candidates. Each transplant candidate is required to submit medical data such as blood type and any known illnesses, which is then uploaded to the computerized network.  The computer system generates a “match run” that ranks the list of candidates in order or best match. 

While the matching system does its best to match donors and recipients to prevent the immune system from identifying the antigens from the organ as foreign, there is no way to know exactly how the body will respond.   

How To Prevent Organ Transplant Rejection?  

With every transplant, there is going to be some level of rejection, but it’s not always clinically significant. To help decrease the risk of rejection, there are a few precautions you can take both before and after an organ transplant.  

1. Find the Best Donor-Recipient Match 

When you finally made the decision to get on the transplant list, it can be hard to wait for the right organ. Because there is a lack of organ donors and there is a strict matching process, it can up to 5 years or longer to get a new organ. Some organs have a longer wait time than others:  

• Small Intestine – 2-3 months 
• Liver – 6-11 months 
• Heart – 1 year 
• Pancreas – 1-2 years 
• Lungs – 2-3 years 
• Kidney – 3-5 years 

Transplant centers, laboratories, and organ procurement organizations like UNOS and OPTN work together to match donor organs to recipients. When donor organs are identified, procuring organizations enter the donor information into the computerized matching system. This system generates a list of potential recipients based on the objective criteria of each recipient, including: 

• Blood type 
• Tissue type 
• Size of the organ 
• Medical urgency of the patient 
• Time on the waiting list 
• Distance between the donor and recipient 

It’s important to know that ethnicity, gender, religion, and financial status, are not part of the computer matching system.  

Once potential matches have been made, the procurement coordinator will reach out to the transplant team caring for the top-ranked patients. It’s the role of the surgeon to determine if the organ is the best fit for the patient.  If the surgeon thinks it’s a good match, they will call the patient before accepting the organ. While it can be tempted to take the first organ that becomes available, it’s important to take your time to have an in-depth conversation with your care team first. If the organ isn’t the best match possible, the risk of organ rejection is higher. 

2. Adhere to Your Medications 

Organ rejection is your body’s way of trying to protect you. To help reduce the body’s natural immune response, transplant patients are given anti-rejection medications. These medications are also called immunosuppressants, which block the body’s natural defenses and allow your body to live peacefully with your donor organ.  

There are three main phases of immunosuppressants that are used during specific time periods after transplant surgery: 

1. Induction immunosuppression are medications given immediately after transplant surgery. These medications are intensified doses to help prevent acute rejection and should only be taken within the first 30 days of surgery. The body is extremely vulnerable in the first few months after transplant, so it’s important to take these medications regularly. 
2. Maintenance immunosuppression include all immunosuppressive medications given once you have finished the first cycle of immunosuppression drugs. These are less intense and are intended to help the body maintain for the long-term.  
3. Anti-rejection immunosuppression are used to treat an acute rejection episode during the initial post-transplant period of during a follow-up period. These medications will be given as soon as acute rejection is diagnosed.  

Living with an organ transplant means taking several medications, some for the rest of your life. Many people will take 6 to 12 different medications daily. Taking so many medications regularly can be exhausting. Studies show that adherence to immunosuppressant therapy adherence after organ transplant ranges from 15%-68%.  

While it’s understandable how difficult it is to adhere to post-transplant therapies, research shows that the advances made in immunosuppression have improved rates of acute rejection and patient survival. If you find you are having trouble taking your medications, talk with your doctor about different interventions to help you.  

3. Adopt a Healthy Lifestyle 

After you’ve received an organ transplant, your body is incredibly vulnerable to disease, illness, and infection. Things that people with healthy immune systems don’t typically have to consider become dangerous and can even be life-threatening. Some conditions transplant patients are at higher risk of after a transplant include: 

• Cytomegalovirus (CMV) 
• Bacterial infections 
• Diabetes 
• Heart disease, like hypertension and dyslipidemia 
• Gout 
• Anxiety 
• Depression 

Because the risk of developing these conditions is significantly higher after an organ transplant, it’s important to adopt a healthy lifestyle. Poor lifestyle choices can increase the risk of organ rejection and can contribute to developing other illnesses.  

A recent study examined the risks and causes of death of patients after a kidney transplant. The researchers looked at 5,752 patients who had a kidney transplant at the Mayo Clinic between 2006 and 2018. During this time, 691 patients died with a functioning kidney, 20% from cancer, 19.7% from infection, and 12.6 due to heart disease. Another 533 patients lost their transplants because of kidney failure and 38% of patients’ kidneys failed due to organ rejection.  

This study suggests that more than just immunosuppressive medications are necessary to help improve post-transplant outcomes. Some safety measures you can take include: 

• Hand washing often, especially around meal times, going to the bathroom, and touching animals 
• Use food safety protocols 
• Avoid cleaning up after pets 
• Avoid any yard work 
• Wear a mask in crowded or public areas 
• Drink purified water only 
• Minimize travel 

In addition to implementing strategies for safe living, it’s important to follow a healthy diet and exercise routine. Depending on the type of transplant, your dietician may have specific diet protocols for you to follow, but a few general guidelines include: 

• Eating high fiber foods, like raw fruits and vegetables 
• Prioritize lean proteins like chicken, white fish, and eggs 
• Stick to low glycemic carbohydrates like oats and potatoes 
• Drink lots of water 
• Reduce or minimize salt intake 
• Avoid highly processed foods 
• Limit caffeine and alcohol consumption 
• Avoid grapefruit or grapefruit juice 

Exercise is an important part of a healthy lifestyle, but try not to run before you walk. While starting physical activity as soon as possible will help keep your body healthy, the recovery process takes time. Discuss your exercise routine with your doctor and transplant team so you can determine a safe exercise program. 

4. Commit to Your Recovery 

Recovery from an organ transplant is hard work. An invasive and major surgery like transplant surgery puts a lot of strain on the body and requires patience as the body starts to heal. While there are many benefits to transplant surgery, it also comes with a host of challenges.  

Many people feel better quickly after an organ transplant. Sometimes, it may even be surprising to feel so good after feeling so bad for so long. This feeling of well-being may drive you to push your body faster than it can go. As a result, you may start feeling conflicting emotions such as happiness and sadness, all at the same time. You may even start to feel a sense of guilt for receiving someone else’s organ that saved your life while they passed away (if the donor was deceased).  

Studies show that an estimated 50% of transplant patients experience at least one episode of substantial anxiety or depression within the first 2 years after a transplant. Symptoms of post-traumatic stress disorder (PTSD) are also prevalent and appear in about 25% of transplant patients.   

Anxiety, depression, or PTSD can be caused by several factors after transplant surgery, one of them being post-transplant care. Once you’ve been discharged from the hospital, you will need to adhere to a medication regime, follow up doctor’s appointments, tests, and procedures, and may even need to have another surgery.  It also means changing your lifestyle and being gentle with yourself as you ease your way back into regular responsibilities like work or school.  

Post-transplant life can be incredibly emotional and way heavy on people. There may be times when you want to indulge in unhealthy foods, skip medications or cancel a doctor’s appointment. But to do so would risk your new organ and your life. To make the recovery process go as smooth as possible, it’s imperative to make a life-long commitment to your recovery.  

Get the Support You Need 

An organ transplant is a life-altering surgery. It comes with many benefits, like a new organ and a new perspective on life, but also comes with challenges. It can be overwhelming and lonely at times as you try to navigate this new life. But remember, you are not alone. At PatientsLikeMe, there are hundreds of members who have had an organ transplant and understand exactly what you are going through. Join the conversation today to connect with others who have had a transplant and can support you along your transplant journey.