Rejection is one of the first things people ask me about when going through transplant evaluation.  The thought of organ rejection is scary and, even though that fear decreases as time passes, it never really goes away.  Let’s take a look at what rejection is and how it’s treated.

What Is It?

Your transplanted organ has come from someone who does not share your DNA.  The only transplants that are not rejected are those received from an identical twin with shared DNA.  So when your organ is transplanted, your body screams, “STRANGER DANGER” and immediately starts to attack it.

Just like when your body detects a bacteria, virus, or infection, it goes to work to get the foreign object out.  In normal cases, this is precisely what it should do.  But, in the case of an organ transplant, it’s the exact opposite.  This is why organ recipients take immunosuppressants (and also why we catch viruses and infections easier than most).

Types of Transplant Rejection

There are three basic types of organ transplant rejection:

Hyperacute Rejection

When organ transplants first started, this was far more common.  Now, the matching and testing done makes this type of rejection rare.  It typically happens within hours or days of transplantation, includes Primary Graft Malfunction and is irreversible.

Acute Rejection

This scary-sounding rejection is common.  Most people will experience some form of acute rejection in the first year of their transplant.  While it is more common early in transplant, it can still occur years down the road.  I have had two bouts of acute rejection (more on that later).

Chronic Rejection

This one is a little less defined.  Think of it as a progression of injury from your immune system that has caused damage over a longer period of time.  A history of numerous bouts of acute rejection, untreated acute rejection, and even general immune system damage could cause chronic rejection over months or even years.

It’s Not As Bad As You Think

Contrary to what you might see on TV (thanks Hollywood), rejection is seldom something that requires emergency transport or an immediate second transplant.  More often than not, it will be detected through the regular blood work we receive.  Even when rejection occurs (and it almost definitely will), it is detectable and treatable, without all of the television dramatics.

The two times I have gone through rejection, I felt nothing.  Like, zero, zilch, nada.  I went in for my regular blood test and my liver enzymes were very high.  In both cases, had I not gone in for my blood work, I would not have known I was experiencing rejection.  See that link up there?  Go read that post about the importance of blood work and clinic visits if you haven’t already.

After an ultrasound and biopsy, I received high dose steroids.  While some people may need to be admitted into the hospital for rejection, that was not the case for me.  I simply checked in at the outpatient infusion center at my hospital, received 45 minutes of IV steroids three days in a row and went home.  After some medication adjustments and more frequent blood work to monitor my progress, PRESTO my numbers returned to normal.  I mean, not immediately, but they did return to normal.

Signs of Rejection

Well, you may not feel anything or show any symptoms.  Or you might.  Like most things, everyone is different and just like the rest of your transplant journey, it’s unpredictable.  Rejection can be very mild to more severe.  It could require hospitalization, outpatient infusion, or a medication change.

There are some sure-fire things to watch for though:

• Fever
• Redness/Tenderness/Pain at the transplant site
• Malaise
• Flu-like symptoms like vomiting, diarrhea, chills, body aches, generally feeling like you’ve been hit by a truck
• Swelling
• Low urine output
• Dizziness

What To Do About It

Don’t panic.  If you suspect rejection (or have any symptoms) call your transplant team.  Again, if you are getting your lab work regularly and going to your clinic visits, rejection can be detected and treated.

Going through the transplant process teaches us (or should teach us) how to listen to our bodies.  We know when things feel off.  We’ve learned what feels normal and that even when we feel like, “it’s probably nothing,” it could be something.

I received my transplant almost eight years ago now.  I still get in touch with my team when something isn’t right.  There is an entire team of people at your transplant center who are there to help you live a long life with your organ.

No question is a dumb question.  If you’re not sure about something, ask.  Fairly recently, I had been feeling dizzy off and on throughout the day.  I called my PCP’s nurse line and talked to someone there (it turns out my blood pressure had been low) and we were able to get things feeling normal.  I still called my transplant center and even went to the ER just to be sure.

I’ve also had a stomach virus and “knew” it was a stomach virus.  I called my team anyway.  If for no other reason than to be sure they are in the know so if something were to happen (even unrelated), they know what’s going on and have some history.  I think it’s a safe bet to say that your transplant team would rather you err on the side of caution.

It’s (Pretty Much) Inevitable

Most everyone will experience some degree of rejection.  The severity and treatment will depend on each individual recipient.  But just because it’s inevitable, doesn’t mean it’s catastrophic.

The likelihood of you having an ambulance ride, a team rushing to your hospital room, or a Hallmark movie made from your rejection story is slim to none.

It’s Always On Your Mind

Even though it happens to almost everyone, is treatable and reversible, and you may not even have symptoms, doesn’t mean it won’t have an impact.

As recipients, we have twice-a-day reminders that we face rejection when we take our medication.  Beyond that, it’s always there…lingering in the back of our minds.  We take precautions to avoid illness and infection.  We follow the recommendations of our team to better our survival chances.

Even with the thought of rejection, it’s important to try to move past the fear and actually live.  I know I say it often, but we’ve been given a second shot.  Don’t let the fear paralyze you.  Going through transplant was the hard part, and you did that!  Now it’s time to soak it all in and enjoy all the life you get to live.  Even with the bumps you may encounter along the way.