You’ve finally received your transplant and then it hits you.  Post-transplant guilt.  What is post-transplant guilt and how do you move through it?

Post-Transplant Guilt is Completely Normal

From the beginning, you’ve had the knowledge that getting a transplant meant one of two things.  Either someone has died and because of their decision to be an organ donor, you have a second chance.  Alternatively, someone who is completely healthy has just undergone major surgery to donate an organ to you so that you can live.  That’s heavy stuff.  There’s no amount of rationalization that could adequately prepare you for the knowledge that your life has been saved because of something someone else has done for you.

You’ve Come a Long Way

 You’ve been through so much.  There’s the obvious physical pain.  Poking, prodding, swelling, trouble breathing, trouble walking, and just overall “everything hurts” kind of pain.  Then there’s also the mental toll of a million (or at least it feels like a million) tests, blood draws, appointments, and hospital stays.  Add to that, you’ve had extremely difficult conversations with your family, friends, and kids.  You’ve missed family gatherings, birthdays, graduations, and even just the day-to-day “mundane” stuff.

But you’ve made it!  You received the call, made your way to the hospital (perhaps more than once) to go through your pre-transplant workup, and you’re here.  On the other side of your surgery.  Sore, but on the road to recovery and a new life.

Rationalizing Post-Transplant Guilt

Perhaps you’ve been rationalizing it all along so that you’d be prepared when the day finally came.  But here it is and, as it turns out, you weren’t quite as prepared as you thought you’d be.  Not that I’m speaking from experience on that at all *cough*.

I remember spending a fair amount of time while I waited for my transplant pondering all of the things that would have to come together for my life to be saved.  One of my doctors at the hospital would have to advocate for me to be seen by a hepatologist.  The transplant committee would have to come to the decision that I would be a suitable candidate for a transplant.  My family and friends would have to continue caring for me physically and emotionally.  At some point, someone who decided to be an organ donor would have to die.

Just thinking about the weight of any one of those things is enough to bring you to your knees with humility.  All of them together?  Well, that’s a whole new level.

Still, I thought I had done the bulk of the processing beforehand.  Nope.  All of that prepping, planning, and rationalization was not going to prepare me for the ton of emotional bricks that landed on me after transplant.

Mixed Emotions

After my transplant surgery (which was followed by a second surgery due to complications), it was several days before I was lucid enough to wrap my head around the fact that I had made it.

Of course, the first thing most people feel (ya’ know, outside of “ow, ow, ow, where’s the pain med button?”) is happiness.  I mean naturally, right?  You’ve just woken up to a whole new you!  You can be with your family!  You can get back to your life!

Then comes the overwhelming simultaneous sense of gratefulness and post-transplant guilt.  WHAM!  Right in the kisser!  Everything is heightened.  The beauty of the sun on the trees.  The look on your kids’ faces.  The sound of the rain on the window.  How many different styles of scrubs there are out there (hey, those pain meds do some funny things, don’t they?).  

But (at least in my case), someone has died.  Someone’s mom, son, daughter, brother, sister, best friend, or grandparent is now gone.  Somewhere, the very thing you were trying to prepare your own family for has happened to another.  Somewhere, people are mourning an enormous loss.

Perhaps, you had a living donor.  Even though there is not the loss of a family member, someone you know (or even more amazing, someone you don’t know) has gone into a major surgery to donate an organ for you.  Someone took a risk to save your life.

How to Move Through Post-Transplant Guilt

First of all, lean into all of those feelings.  Breathe them in and appreciate them because you get the profound opportunity to be alive to have them.  Talk with a close friend, a family member, or your therapist to share your thoughts.  Write down all of those things you’re feeling in a journal.

In the event you received an organ from a deceased donor, please remember that they did not die so that you could live.  You live because they heroically made the decision to be an organ donor.  There is a distinct difference there.

Then, be grateful.  For the trees, your kids, rain, cute scrubs, and everything else around you.  Tell the people you love how you feel about them.  Thank the people who were by your side through it all.

Finally, live your life to its fullest.  You just had it handed to you with a big, shiny red bow.  Start each day with a grateful heart.  Think of your donor (living or deceased) and thank them.  Get out and do good things.  Stand up for what’s right, give back to the community, cheer louder than any other parent at a school event.

We Have New Perspective

There is a tradition in the hospital where I received my transplant.  Recipients ring a bell three times before they leave to go home after their transplant.  I rang that bell, and each ring symbolized something different.  The first ring was to honor my donor and his family for the incredible gift he gave me.  The second was to honor myself, my family, and all of the medical staff who were a part of my transplant journey.  The third and final time was to honor all of the people who have lost their lives and for those who continue to fight while waiting for their second chance at life.

Transplant has changed us more than just physically.  We know how precious life is.  We understand how it can be wonderful one moment and slipping through our fingers the next.  Every day we remember that we’ve been given a gift and how fortunate we are to be able to live our lives.  So smile at the grumpy person at the grocery store or hug your kids for an extra minute (even in front of their friends).  Because when it comes to the good times, we’re going to be there, holding on with all of our might.