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Rejection 101: What You Should Know

So… what is rejection?

Even though you take medications to keep your immune system calm, rejection can still happen.

This is most common in the first weeks or months after having a transplant while your team is adjusting your meds. Rejection can also happen if you skip doses or take your meds late—your body needs those meds every single day to protect your new organ.

Rejection can happen when your immune system thinks your transplanted organ doesn’t belong, and it attacks it.  The good news? Most of the time, rejection can be controlled by adjusting your medications.  Your team might increase the dose of your anti-rejection meds, ask you to get labs more often, and see you in clinic more frequently while the rejection is being treated. 

Having rejection does not mean you’re going to lose your transplanted organ. When rejection is caught early—and you follow the treatment plan—your organ can usually recover. 

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More about rejection…

Your labs can often catch signs of rejection before you feel different—that’s why it’s really important to get them done on time. But sometimes your body will give you clues, like just feeling “off,” having a fever (101°F or higher), or feeling like you’ve got the flu with tiredness and body aches. If you start to feel sick or notice these symptoms, call your doctor or transplant coordinator. They’ll talk with you about how you’re feeling and may have you get labs or come in to be checked out. 

Although there are common symptoms, as listed above, different organs have different warning signs:

Different organs have different warning signs.

 

Liver

  • Low-grade fever, flu-like feeling, tiredness, stomach discomfort
  • Labs: check the liver function tests (ALT, AST, GGTP, total bilirubin).  If the labs results are higher than the normal range, you may have rejection.
  • Late signs: yellowing skin/eyes, pale poop, dark pee, swollen belly, itchy skin

Kidney

  • Fever, tiredness, low urine output
  • Pain over the kidney
  • Swelling (edema) and weight gain
  • Labs: check the kidney function tests (BUN and creatinine)

Heart

  • Fever, sudden weight gain, feeling “not quite right”
  • Chills, aches, dizziness, headaches
  • New chest pain, new shortness of breath
  • Fast heartbeat or palpitations
  • Low blood pressure
  • Swelling in your hands, ankles, or feet
  • Decreased appetite, nausea

Lung

  • Fever, flu-like symptoms (chills, aches, headaches)
  • Cough, chest congestion
  • Shortness of breath
  • New tenderness or pain around your transplanted lung
  • Feeling very tired

Intestine

  • Fever, flu-like symptoms, tiredness
  • Diarrhea and increased stooling, belly pain or swelling
  • Blood in the stool
  • There are no specific rejection labs, but electrolytes (like sodium, potassium, and bicarb levels) and albumin may be out of normal range

How does my team know for sure that I have rejection?

  • A biopsy is the best way to diagnose rejection.  A biopsy is when a doctor takes a tiny sample of tissue from your transplanted organ and looks at it under a microscope. Getting a biopsy gives the best answer to the question “Do I have rejection?”
  • Blood tests
  • Other tests or procedures, like a chest X‑ray for lung transplant patients or an endoscopy for intestine transplant patients

How is rejection treated?

Most of the time, rejection is treatable—and this can usually be done at home and by keeping in touch with your transplant coordinator for med changes and lab results.  How rejection is treated depends on:

  • What organ you received
  • Whether it’s early or later on after transplant
  • The level or degree of rejection (mild, moderate, or severe)
  • The type of rejection you have
  • Other illnesses or conditions you might have

Treatment is usually about calming down your immune system a little more so it doesn’t keep attacking the transplanted organ.  Your team will do this by:

  • Increasing the dose and blood level of your main anti‑rejection med (tacrolimus, sirolimus, cyclosporine)
  • Adding prednisone or increasing your prednisone dose if you are already taking it
  • Adding another anti-rejection medicine, like mycophenolate or azathioprine

If the transplanted organ is still rejecting - after treatment with medications - transplant recipients are usually admitted to the hospital for special anti-rejection medicines given through an IV (intravenous line). They may also have additional tests and will be monitored closely.  The transplant team might do another biopsy to check how the transplanted organ is doing and whether the treatment is working. 

So you if you have rejection, what’s next?

Here’s how you can help your transplanted organ get better:

  • Take your medications every day and on time. This is huge. Set alarms, use pill boxes—whatever helps you stay on track.
  • Keep up with any dose changes by keeping in touch with your transplant coordinator.  Your transplant center’s portal or app is a great way to do this!
  • Get your labs done when your team asks. They’re checking to make sure treatment is working.
  • Go to all follow‑up appointments.
  • Stay connected with your transplant team, especially your transplant coordinator. Tell your coordinator how you’re feeling and if you’re having trouble taking your meds.

You’re not going through this alone—your transplant team is here to help you succeed.

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This content was developed independently by AST and supported by a financial contribution from Sanofi