Living with a pediatric organ transplant recipient can be challenging
enough without bumps in the road. Watching for signs of illness, ensuring they
get enough rest and that they eat well can seem like a full time job. When the
bumps do come (and they always do), it opens a set of potentially troublesome
experiences.
In my last post, I detailed my struggles with Sarah’s biopsies and
their outcomes. While she returned home last Monday, new issues remain
unresolved. The liver docs added a new immunosuppression
med to her daily regimen and she continues to slowly wean off prednisone.
Thus far she seems to be handling the new medications fine. To watch
her, you’d never think anything was wrong with her. She’s the same funny,
joyful, excitable little girl she’s always been.
But that’s the problem with transplants.
You never see the inside.
After further review of Sarah’s biopsy results, it’s been determined
donor-specific antibodies (DSA) are affecting her liver’s “happiness” within
her body. Additionally, our liver docs confirmed fibrosis, or scarring, is more
evident and seems to be ongoing as they review past biopsies.
The good news is that the scarring is at such a slow rate a second
liver transplant will not be necessary in the near future. The not-so-good
news: it’s highly likely Sarah will require a new transplant sometime between
two to ten years. That’s sobering reality for our family.
We always knew this new life – our new “normal” – living with an organ
transplant recipient would not resemble what other family’s consider a normal
existence. We have to worry about things like pneumonia, EBV, CMV and lymphoma
either because of a suppressed immune system or as a side effect of the immunosuppressive
meds.
Navigating this life of uncertainty in which we find ourselves, somewhat
intensified even from the past, is proving to be daunting and heartbreaking.
Maybe I’ve always suspected Sarah would need another liver sometime in
her adult life. I didn’t consider the possibility she’d need one before she
reached adulthood.
The sunny side of this is the hope that the new med will prevent future
scarring. There are still many unanswered questions regarding the DSA and what
else might be happening in Sarah’s body. It’s once-a-week labs for the time
being so they can monitor her liver numbers. Those numbers – ALT, AST, GGT and
others – will start to paint a picture of where her story may be headed.
So, how do we navigate this life we’re living? Aside from breaking down
every so often and crying out to God, we find ourselves falling back into His
arms and relying on the prayers and support of those around us, hoping the need
for a new liver won’t arise too soon.
In the end, hope is all we really have.
