Waiting for a transplant isn’t about getting on the list and then hanging out on the couch until your call comes.  I’ve discovered five ways waiting for a transplant is like the carnival and how to ride those rides like a pro.

I know what you’re thinking.  But Tiffany, carnivals are fun!  There are rides and funnel cakes and lights and excitement.  How in the world can waiting for a transplant resemble any of that?  I’ve made some correlations that will help you understand what you might face during your pre-transplant journey.

Carnival Ride One – The Super Shot

There you are.  You’re buckled in and ready to take your transplant journey.  You’ve gone through the barrage of testing and reached the top of the ride of being listed.  The view is amazing.  You can see how everything lines up perfectly on the horizon.  All of your plans to get through it all are in view.  You’re calm, eager, and happy.  *BANG*  It’s like someone cut the cable.  You’re plummeting with increasing speed to the sickly bottom.  Just like that.  No warning, just a downward turn out of nowhere.

When I was sick, things changed like this on a regular basis.  I can think of one day in particular.  My mom and I had picked up my kids from school and we were working on homework together.  My daughter and I were making a caterpillar out of a tp roll, cereal, stickers, and pipe cleaners.  We were all enjoying spending time together and laughing.

I began to feel worse as the day went on.  I had the chills, and when we loaded up the car to take the kids to their dad’s, I was wearing several layers.  In 70 degree weather.  When we got back, I curled up on the sofa for a quick nap.  When I woke up about 20 minutes later, I had a fever of 103 and we got in the car to head for the ER.

Over the course of three hours, I had gone from great to plummeting to the sickly bottom of the Super Shot ride.

When you are waiting for a transplant, things can change often and, even though it’s scary, you have to ride it out.

Ride Two – The Tilt-A-Whirl

This ride starts out fine.  You’re in a comfortable seat with your friends or family.  It’s not moving very fast and you have the ability to control part of the ride.  You’re thinking, “OK, I can do this.  This might be alright!”  The ride starts to move a little faster and now you’re starting to get that mushiness in your stomach.  The nausea and dizziness set in.

While you are waiting for your transplant, you are on medications that change, you have dietary changes, and your body is sick.

I can remember having a normal breakfast in the morning and thinking, “OK, I can do this.  This might be alright!”  Then, as the day progressed, I could feel that mushiness coming on.  By lunch, I’d often feel nauseated and dizzy.  That would lead to a guessing game of what would be palatable so that I wouldn’t have an empty stomach with all the meds in my system.

Sometimes the nausea would hit while on the way to the hospital.  Consider keeping some bags in the car for when the nausea hits and you may not be able to get off the road.  I like these.  They are compact but durable and are easy to throw away.

Once again, you’ll have to wait out the ride.  Which, when it comes to dizziness and nausea, may mean you need to lay down and rest for a while.

Carnival Ride Three – Bumper Cars

This one applies in both the literal and figurative sense.  First, let’s talk about the literal sense for a minute.

As you are waiting for a transplant, you may need medical equipment like a wheelchair or walker.  Getting used to using a walker can be challenging.  You forget about the amount of space you take up and may find yourself running into a door jamb or two.

As for a wheelchair, that’s even more space.  Several people wheeled me around in a wheelchair throughout my wait.  I hit grocery store endcaps.  Nicked corners of walls.  Had small bumps into the car.  The big tip here is to keep your hands and feet inside the ride at all times.

There is also a more figurative way of looking at your transplant wait as a bumper car ride.  You will encounter one challenge or obstacle after another.  These will happen often until the ride is over.  And they won’t completely be gone after transplant either.  Typically though, there are fewer and less severe challenges after transplant.  You have to take those bumps and keep on driving.

Ride Four – The Carousel

You get on this ride and figure you’ll sit and enjoy the ride.  This one is easy.  As it starts, you notice the ticket booth, then the little kid holding a balloon.  That’s followed by the Tilt-A-Whirl (Ew!  I don’t want to go on that ride again!) and the dad managing two kids covered in cotton candy.  Then the ride operator and back to the ticket booth.  Balloon, ew, cotton candy, operator, booth.  Over and over again until the ride ends.

You’ve gone into the ER for the umpteenth time.  You talked to someone as you came in and told them why you are in.  Then, you talked with a triage person and gone over again why you are there.  As you sit in your ER room, a nurse or medical assistant comes in and asks, “So what brings you in today?”  Finally, you see a doctor and they say, “Tell me more about what brought you here today.”

And it’s not only in the ER.  It’s when you go into the doctor’s office.  Or when you’ve been to the ER, gone home, and have to go back the next day.  Every time you have to go through your disease.  That you’re waiting for a transplant.  Your medications, and why you are there.  Disease, transplant, meds, why you’re there.  Over and over until the ride ends.

Like a carousel, you start to know what to expect and you can prepare for it.  You find ways to simplify, keep it short, and move things along faster.

Before you know it, you can get on and find your favorite horse with no problem.  Or where I used to ride a carousel, your favorite giraffe, lion, camel, or dog.  Then sit and watch everything go by.

Carnival Ride Five – The Roller Coaster

This ride needs little introduction.  We are all familiar with how this one goes.  One minute you’re climbing slowly, up, up, up.  The next, screaming as you speed down the hill and around a bend.  You may even find yourself upside down from time to time!

The emotions that go along with waiting for a transplant are no surprise (and you can read about how to cope with that in my blog post here).  But it’s not only the emotional roller coaster.

Because of fluid retention or appetite, there is a roller coaster of weight gain and loss.  Some may experience a spiritual roller coaster.  Others might find they are on a relationship roller coaster as those around them try to cope too.

Once again, you have to remind yourself that this is all temporary.  Eventually, you won’t have the ups and downs, twists and turns, or the upside-down moments that dump your pocket contents onto the ground below.  Things will normalize and what was once harrowing becomes more like the kiddie roller coaster you saw around the corner.

The Most Un-Fun Carnival Ever

We didn’t even hit the games of chance, go to the funhouse, ride the centrifuge, or see the bearded lady.  Still, this is one carnival we can’t wait to leave!

The time you spend waiting for a transplant is not fun, and that’s no surprise.  You knew that your wait was going to have its challenges even if you could see the horizon at the beginning.  The things in life that were once easy have become difficult, scary, or nauseating.

But you bought your tickets (got listed), so all you can do is take your rides in stride.

Remember, every carnival eventually packs up and heads somewhere else.  And when that happens, you can always enjoy a funnel cake on your way out.