Jacob’s donation and Tim’s transplant went well initially. However, less than 48 hours in, it’s clear that Tim’s FSGS has recurred in the donor kidney. His surgeon said he hasn’t seen a recurrence happen this quickly in a decade.

In the few hours when things looked good, Tim lost all of his edema. His face slimmed down and he was excited at how small his legs were. Despite being beyond exhausted and utterly annoyed by drains and tubes and IVs, he looked at me and said, “I haven’t felt this great in two years.”

So, the fact that the FSGS is back and has robbed him of that feeling and kind of put us back to square one… crushed doesn’t even begin to cover how we feel.

There’s a treatment used in post-transplant recurrence called plasmapheresis that could work to reverse course and get the donor kidney into remission. It’s intense, and required him to undergo yet another procedure under anesthesia to have a vascular catheter put into his chest.

Plasmapheresis involves removing plasma from Tim’s blood and replacing it with donor plasma and/or albumin, in the hope that it’ll remove a factor in the plasma that makes his kidneys prone to spilling albumin and other critical factors. It’s intense, and each session takes about two hours from start to finish. He’s scheduled to have at least 7 treatments over the next couple of weeks.

He’s now had three treatments.

Maybe, for once, Tim will fall into the percentage of cases where a treatment option works. Maybe he can catch a break. I’ve never hoped for anything more.

Regardless, it’s more stress on this kiddo (who does NOT thrive in medical environments) and everyone supporting him. There’s a good chance it’ll add to the amount of time we’re up in Pittsburgh. 

Funds are being raised for COTA for Team Timmy to assist with transplant-related expenses. If you can, a donation would be a great way to offer your support.

Continued thanks to everyone who has reached out, donated, sent gifts, and kept us in your thoughts.