Tim’s officially 14 days post-transplant. He’d envisioned that he’d be out of the hospital by now, enjoying and exploring what he could of Pittsburgh with his little sister in tow. However, with the FSGS back in full effect, he’s on day 16 of his hospital stay. Little sister and Jacob are back home in Tennessee because the situation was just way too stressful for her (and, by extension, everyone else).

To say that this has been difficult on him (and the rest of us) is an understatement. The transplant was supposed to be his fresh start. His opportunity to get his life back. He had a very brief taste of what that could look like, and now he’s fighting to get it back.

Then, he finally got his NG tube out and was cleared to eat a full diet. He was so happy to be able to eat his favorites – peanut butter and rice, beans, and guacamole – with no salt restriction. He had grand plans for what he’d eat for every meal for the coming days. Then, BAM! He’s diagnosed with a rare surgical complication that affects like 1-8 percent of patients, and his full diet gets reduced to a low-fat chylous diet. Basically, his lymph vessels are leaking fat into the abdomen, which is not good (I believe that’s the medically accurate term for it.) He’s told he has to cap his daily fat intake at FOUR grams. FOUR. For a kid whose go-to foods are avocados, peanut butter, and olives…you can just imagine how well that went over.

Oh, and for good measure, they told us he needs to eat at least 1,200 calories a day. A tall task for a picky kid who is essentially on a no-fat diet. Fun times.

Thankfully, he’s been sticking to it, and they’re going to try to reintroduce fats in the coming days. 

There have been some other positives, too. He’s also gotten most of his catheters and IVs out – though one of those he accelerated by putting up such a fight during a dressing change that the stitches popped out of place. So, he’s no longer attached to an IV pole and has gained some independence. He can wear his own clothes again, making him feel more like himself. 

As for his new treatment… he completed his 7th plasmapheresis treatment today. So far, his numbers are still trending in the right direction, but we have a way to go. He has two more scheduled, and then we’ll assess and see if he’s in remission, close, or whether we need to consider different treatment options. I honestly don’t know what that might mean for his stay in the hospital or how we’ll be sticking around Pittsburgh. 

This has taken such a toll on him, not only physically, but also emotionally, and it’s been so difficult to watch (and often have to participate in to get him to get on board with doing the things he needs to do to go home eventually). 

One of the doctors I was talking to one night – after a particularly rough day of pheresis and dressing changes – smiled sadly and said “FSGS is a bear.” It’s unlike many other kidney diseases because the cause and mechanisms of it are so unknown. It’s debilitating and devastating. It’s something that he’ll have to navigate for the rest of his life, even when (not if) he gets into remission. I don’t know how we’ll get there, but we will. Somehow. In the meantime, Tim needs as much support as he can get. He’s scared and overwhelmed. If you can, I’m sure he’d love to hear from you. Anytime I show him a text, an email, or a comment, it brings a smile (or a glimmer of a smile) to his face.

And, as always, funds are being raised for COTA for Team Timmy to assist with transplant-related expenses. If you can, a donation – even a small one – would go a long way to help.  Thank you <3