So, we are officially 2+ years post transplant and I never ever ever thought I would say this but 60% of my days I forget that Bea had a liver transplant.
I remember a time where it was all that consumed my thoughts. My ever waking moments were focused on which nurse was coming to the house and when, what blood test was next and the thousand ways the results could be interpreted. After transplant, we were living minute by minute with the hopes that we could keep Bea from spending the night in the hospital. And over the last 2 years, 4 months, and 9 days – we’ve succeeded.
Although we are frequent flyers of Cincinnati Childrens Hospital Medical Center, we are there for doctor appointments, blood draws, xrays, CT scans, etc. We haven’t spent one night in the hospital since she was released from her transplant.
After transplant, a patient typically has a liver biopsy once every 5 years. Yes, we can get a pretty good picture of how the liver is doing via blood work – you never know 100% unless you biopsy it.
Althougb Bea’s liver numbers have been pretty solid, her EBV is still persisting which has made us put her on the lowest dosage of immunosuppressants. This increases her risk for rejection MAJORLY so we have to biopsy and get a good picture of how this liver is doing.
There can be 2 outcomes. Outcome #1: Her liver looks as good as it does in the blood work. Then, it’s likely we will continue on the low dosage of immunosuppressants in the hopes that the EBV eventually takes a hike.
The second outcome is that there is inflammation in her liver. Not outward rejection (we would know that from the blood work) but irritation that can lead to rejection. If her liver looks unhappy AT ALL – we will likely have to increase her immunosuppressants and, thus, the EBV will go crazy. Because we won’t be able to lower her immunosuppressants without compromising the liver, we will likely head down the chemo path.
SO – prayers. Prayers, prayers prayers.
We take Bea in on Monday morning, she goes under anesthesia around 9:30am, and then recovers and spends the night in the hospital Monday night. Ugh. I am dreading it but am trying to focus on the fact it’ll be good to have a clear picture of the health of her liver.
And, as I’m sure you’d agree – she looks healthy to me!