Everyone would like a roadmap of what to expect after their transplant surgery.  The thing is, that roadmap is impossible to lay out.

What Usually Happens

Some of the most common questions I hear have to do with what is usual or normal after transplant surgery.  While some things are common, many things are not.  Some things you can expect without fail are:

• You will experience some pain.  Doctors and nurses like to use the term “discomfort,” but let’s be real.  We all know this is code for pain.  Everyone has a different threshold so one person’s tolerance will differ from the next, but it all still hurts.  However, this doesn’t last forever and there are medications.  I wrote an entire post on this subject alone.
• There will be fatigue.  You are on pain medications and you’ve just been through a massive surgery.  With all of that comes sleepiness and fatigue.
• Time in the hospital will range somewhere in the 7-14 day range.
• There will be frequent post-transplant clinic visits.  I’m talking twice a week (or more) in the beginning.
• You won’t have much of an appetite.  Anesthesia, pain medications, and surgery can all make you feel generally yucky.
• You’ll be recovering at home for months following your surgery.  This is not an outpatient procedure.  Six weeks is the bare minimum recovery time.  And that’s just when things like weight and driving restrictions could be lifted.
• You will not be able to return to work for at least 2-3 months after your surgery.  This all depends on how you recover.
• Rejection.  While this doesn’t typically happen in the months immediately following transplant, many people experience some form of rejection in the first year.  It’s not a matter of if, but when.

So what about the unexpected?

Expect the Unexpected

I’ve said it so many times it’s borderline silly.  Everyone is different.  Every person experiences life differently.  Each person’s body responds differently to surgery, anesthesia, and pain.  One thing you can count on is the unexpected.  Some of these things could be:

• A second surgery not long after your transplant.  While it isn’t common, it can happen.  I had one the day after my transplant to manage fluid output.
• Infection.  This can be at the surgical site or just something you pick up.  Your team will give you instructions when you go home on what to watch for and when to call.
• Prolonged hospital stay or referral to a physical rehabilitation center.
• The reinsertion of a feeding tube.  If you can’t get the nutrition you need by eating, a feeding tube may have to be reinserted.
• A shorter, or longer, recovery period

The unexpected is just that, unexpected.  It’s impossible to know what might happen.  The best thing you can do is follow what your team tells you and don’t get caught up in worry.  Just like pre-transplant, you have to tackle things one at a time as they come.

Support Groups Are Not Doctors

There are so many support groups available for people who have gone through a transplant.  I’m a member of several on Facebook alone.  Hospitals may also offer patient-run support groups as well.  All of these can be beneficial in so many ways.  But, while these support groups are great for camaraderie and emotional support, they can’t provide everything.

If you are looking for people to talk to who share a common experience, they can be fantastic.  However, I’ve often seen people turn to Facebook groups about a physical symptom they are experiencing or to ask if an activity is ok post-transplant.

Folks, Facebook is not your medical team.  Neither is television, your pastor, your best friend, or yours truly.  If you have a question about something that has to do with your transplant, call your team.  Do you want to get a massage two weeks after your transplant?  Call your team.  Is taking an over-the-counter medication ok?  Call your team.  What does it mean if you’re running a fever?  Call your dang team.  Please look to the experts for answers.  And I’m not talking about an expert, I’m talking about your experts.  The ones who know your specific case.  I get so concerned for people who think that groups on social media or doctors on TV are the experts.

There Is No Fix

A transplant does not “fix” you.  There is no “back to normal” after a transplant.  Transplant is a trade-off.  You are trading a disease (that could eventually be terminal) for living with a transplanted organ.  Life will forever be altered for you.

Many of the changes are positive though.  You are alive!  You can’t get much more positive than that.  You have shown yourself how strong you are.  You know that you can face massive adversity and prevail.  For most people, you have a new appreciation for life and all it has to offer.  You have more time.  More time on this earth to spend with your spouse, kids, parents, extended family, and friends.  Every day is precious.

You also have medications you take daily or twice daily.  You have doctor’s appointments, blood draws, and possibly physical challenges you didn’t have before.

Expect Fluctuation

One thing is certain.  There will be fluctuation in how you are feeling physically and emotionally after your transplant.  Let me share some of the things I experienced physically and mentally over the first few months following my transplant.

• I had a second surgery the first day after my transplant
• I was in ICU for three days with little recollection of what was going on
• I hurt
• I was sleepy all of the time but had trouble sleeping at night
• My food tasted like cardboard but I ate it anyway
• I was sick of being in the hospital and wanted to go home in the worst way
• When it was time to go home I was terrified to leave
• I spent time with my kids
• I had delicious Mexican food I hadn’t been able to eat in months
• I was started on a different immunosuppressant
• I was nauseated
• I hurt (still)
• I was on edge every time I got my blood drawn while I waited for my results to come in
• I went to a billion clinic visits (or at least it felt like it)
• My liver numbers skyrocketed
• I had an ultrasound
• I had an EGD to remove a stent
• My liver numbers leveled out
• My medication dosages changed several times
• My liver numbers went up again
• The medications I took changed
• My liver numbers leveled out again
• My pain subsided
• I could walk up and down the stairs without having to stop (and my kids were so impressed!)
• My energy level increased
• I met my husband

The ups and downs are all part of life.  It’s just that now, there are the additional ups and downs of living with a transplant.

Expect Something Wonderful

With a new life comes this new appreciation.  Wonderful looks different for everyone, of course.  Having the ability to finally check off items on a bucket list may be one person’s wonderful.  For me, it’s everyday things that do it.

Things like going to my niece’s first birthday party a year after my transplant.  We were all watching a slideshow of pictures of her first year of life.  As I’m sitting there, it hits me that I could have missed all of it.  I was inches away from death and now I’m here experiencing all of this new life.

I can become choked up at a simple thing as having a meal with family.  Everyone together, talking and laughing is so wonderful and I’m alive to be a part of it!

Transplant changes you in so many ways, and there are plenty of unexpected things.  But the opportunity to live your life is by far the best.