Navigating a Life of Uncertainty

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.