Today, June 9th, is FSGS Awareness Day. It also marks 5 weeks since Tim had his pre-emptive kidney transplant as a potential treatment for the disease. We knew going into it that FSGS could recur in the donor kidney – statistically speaking, it happens between 30 and 50 percent of the time – but hoped that something would go his way and that he’d have a real shot at a normal life post-transplant. Unfortunately, it recurred within 48 hours of transplant, and he spent nearly a month in the hospital, starting treatment and dealing with complications.
Five weeks post-op and there’s still no end in sight to his outpatient stay up here in Pittsburgh. He did 8 rounds of plasmapheresis (PLEX) in the hospital and has done two treatments in the outpatient infusion clinic. He received an infusion of obinutuzumab – yet another immunosuppressant – in conjunction with the PLEX to combat the recurrence, and there are at least 3 more rounds of PLEX on the schedule.
His team of transplant nephrologists is monitoring labs and tracking progress, forecasting potential plans and treatments if the PLEX+infusion combo isn’t enough to get him into remission.
A different type of pheresis called LDL apheresis is probably up next. It’s known to help with FSGS recurrence, but it’s not widely available at most facilities, and only a handful of nurses are trained to do it. It’s available here in Pittsburgh, so if that’s the next step, we’ll likely stay up here so that Tim can start those treatments. His doctors understand how important it is to get him home eventually, so we’ve also discussed figuring out a way to get him treatments closer to home if and when that becomes a necessity.
I’m hopeful that PLEX and the obinutuzumab will be enough to put him into remission, but over the past two years, I have become less and less willing to keep my hopes too high. They’ve been dashed and destroyed far too often.
His spirits have lifted a bit since he was discharged and Shay and G-Mom arrived. Since discharge, he’s been mini golfing, visited the Pittsburgh Zoo, explored the Heinz museum, and enjoyed having a green light to eat (almost) anything he wants.
He and Shay have fun playing in the outdoor patio off of the cafeteria in the hospital, up in the playroom at the Ronald McDonald House where we’re staying, and in the apartment.
However, since he’s still recovering from a major surgery and undergoing intense pheresis therapy twice a week, his gas tank empties pretty quickly. He’s homesick, too, eager to get back to his house, his reading chair, his pets, his friends, and his routines.
FSGS sucks. There’s no other (less offensive) way to put it. His doctor has repeatedly said that, of all kidney diseases, FSGS is the most challenging and her least favorite for her patients. It’s a lifelong battle against a disease no one really understands or knows how to treat – yet. Tim has never been in remission since he was diagnosed back in February of 2024. Now, post-transplant, he’s fighting to keep his new kidney healthy and protected from the devastating effects of the disease.
We’ll do everything we can to help him and get him there. It’s just taking more time than we ever could have imagined, and it’s affected his life, his sister’s life, and our lives (and those supporting us) in ways I never imagined possible.
If you’d like to support Tim on his journey, you can share kind words, send him mail (temporary address below), or donate to the COTA campaign for Team Timmy to assist with transplant-related expenses for the rest of his life.
Tim Wellman, Room 1005
Ronald McDonald House
451 44th St, Penthouse Floor
Pittsburgh, PA 15201