There is a transition period after transplant as a caregiver.  You’ve been responsible for so much, but now it’s time to let it go.  If you have young kids in your family, I apologize if this blog has triggered Elsa’s voice singing “Let It Go” in your head.

Caregiver Journeys Are All Different

Every transplant story is different and so is every caregiver’s.  Some caregivers have smaller roles leading up to transplant.  Others will have larger ones.  From being a taxi driver to feeling like a full-blown home nurse.

The time frame is different for everyone too.  Some caregivers have been giving care for months and others for years.  Some have been involved for their loved one’s entire life.

One thing is the same for everyone though.  There will come a time when their role as caregivers will transition and be all but done.

The Transition After Transplant Isn’t Immediate

Despite the “never say never” idiom, transplant is never a perfect fix.  Transplant patients will always have medications.  They will have doctor appointments and procedures as a permanent part of their life.  Yet, the kind of care someone needed before their transplant is far less after it.

While the change is quick (depending on the organ, of course), it is not immediate.  This means your transition will not be immediate either.  There are hiccups after transplant and though most of them are minor, they are not uncommon.  Even after transplant recipients go home, they will still need help.  If nothing more than transport to frequent clinic visits.

I can share some insight from my own experience.  I went home 11 days after my transplant surgery which might sound fast.  And it is (although I’ve seen people go home in four days)!  At home, I still needed help.  I could not yet manage the stairs to my room, so for the first couple of nights, I slept on a bed in the living room.  I became more mobile quickly and with a little help, I could make it up and down the stairs.  Clinic visits were twice weekly at that point.  And since I couldn’t drive (both due to surgery and medication) I needed a ride.

A month or so later, my liver enzymes became elevated.  As a result, I needed an endoscopy (EGD) to remove a stent that placed as part of my surgery.  This meant I needed someone to drive me to and from the hospital for that procedure as well.  In fact, 6 weeks is pretty common for a patient to have lifting and driving restrictions, so I needed help with quite a few things.  After a couple of months, things were getting back to a more normal pace and I was able to do most things on my own.

Let It Go

After your loved one becomes more self-sufficient, it can be hard to let it go.  They’ve been dependent on you for so much and for so long, it may be difficult to make that transition.

Any parent can tell you that one of the hardest things to do is let go of your kids.  Allowing them to be independent.  Helping them find their boundaries and limitations.  And watching as they make their own decisions are all part of what being a parent means, regardless of age.  The caregiving of a transplant patient is similar.  As is the transition of letting go.

Before transplant, I needed help with so many things.  Because of HE, I could become completely unaware of who I was.  So managing my medication was impossible.  There was one morning I woke up and thought I was completely with it.  I sat at the kitchen table and began to pull my morning meds together.

I poured my lactulose (shivers in disgust).  Then my liquid steroids (hello $1,000 difference in cost between pills and liquid!).  My mom took one look and took over.  I was dispensing my steroids at a lactulose dose (we’re talking 5x or more too much!).  I was on oxygen.  At times, I would wake confused or unable to walk without losing my balance (HE again).  I needed help with meals and even getting dressed sometimes.  Basically, I was a toddler in an adult body.

When you care for someone who needs that much help, deciphering your role is difficult.  Especially when they regain their wits and most of their physical abilities.  Little by little, you can simply let it go.

Some Tips for Caregiver Transition After Transplant

Keep A Watchful Eye While Encouraging Independence

It’s important to encourage your loved one to stay mobile.  There are several reasons for this.  Prevention of blood clots, normalization of digestion, and strengthening your muscles.  They are also weak, medicated, and not-so-sure-footed, so a watchful eye is important as well.

They will also need to get in a good habit (if they haven’t already) of managing all their medications and what they do.  Keeping an eye to make sure they are clear, is helpful.  As is encouraging them that taking medications regularly is a positive and easy way to care for themselves.

Take A Step Back, Not Away

One of the easiest ways to transition is to ease off a little bit.  As your loved one’s health improves after surgery, your involvement should decrease.  A little at a time.  Recipients will continue to need help.  In different ways and different levels, for at least a couple of months.  Use this time to slowly step back in your role as a caregiver.  Please don’t mistake stepping back for stepping away.  They still need you!

Enjoy Time for Yourself

You’ve been there for middle-of-the-night drives, long hospital visits, and countless doctor appointments.  Take a breath and do something you want to do for a change!  Remind yourself of the things you used to do before your job became caring for someone else.

Remember Your Role

Caregivers, you play a vital role in the success of a transplant.  There is a reason transplant centers place such a heavy importance on support systems.  Every patient and transplant center would agree.  Without caregivers, transplants would not happen.  Even though you will not play the same role, in your transition you are still a vital piece to your loved one’s journey.

Most recipients live independent lives again, but it is not without its challenges.  They understand that the one person who can understand where they’re coming from is you.  They know they can count on you if something happens and they need some help.

As a caregiver of someone who receives a transplant, you have gone through a transformation too.  You’ve seen the fragility of life.  Watched in agony as your loved one suffered.  You’ve probably dealt with some pretty gross stuff too.

However, you’ve also had the incredible fortune of seeing the gift of life.  You’ve witnessed a modern medical miracle.  You have endured hard times and now you get to watch as your loved one lives on.  You and your loved one have established a bond that few can rival.

As transplant recipients, we know all that you’ve done for us and even when we didn’t show it, we are forever grateful.  Wear your badge of caregiver honor with pride, because to us, you will always be a hero.