{"id":97,"date":"2026-05-20T02:25:53","date_gmt":"2026-05-20T02:25:53","guid":{"rendered":"https:\/\/cota.org\/cotafortimmy\/?p=97"},"modified":"2026-05-21T18:32:52","modified_gmt":"2026-05-21T18:32:52","slug":"update-14-days-post-transplant","status":"publish","type":"post","link":"https:\/\/cota.org\/cotafortimmy\/2026\/05\/20\/update-14-days-post-transplant\/","title":{"rendered":"Update: 14 Days Post-Transplant"},"content":{"rendered":"\n

Tim\u2019s officially 14 days post-transplant. He\u2019d envisioned that he\u2019d 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\u2019s 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).<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

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\u2019s fighting to get it back.<\/p>\n\n\n\n

Then, he finally got his NG tube out and was cleared to eat a full diet. He was so<\/em> happy to be able to eat his favorites \u2013 peanut butter and rice, beans, and guacamole \u2013 with no<\/em> salt restriction. He had grand plans for what he\u2019d eat for every meal for the coming days. Then, BAM! He\u2019s 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\u2019s the medically accurate term for it.) He\u2019s 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\u2026you can just imagine how well that went over.<\/p>\n\n\n\n

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.<\/p>\n\n\n\n

Thankfully, he\u2019s been sticking to it, and they\u2019re going to try to reintroduce fats in the coming days. <\/p>\n\n\n\n

There have been some other positives, too. He\u2019s also gotten most of his catheters and IVs out \u2013 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\u2019s 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. <\/p>\n\n\n\n

As for his new treatment\u2026 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\u2019ll assess and see if he\u2019s in remission, close, or whether we need to consider different treatment options. I honestly don\u2019t know what that might mean for his stay in the hospital or how we\u2019ll be sticking around Pittsburgh. <\/p>\n\n\n\n

This has taken such a toll on him, not only physically, but also emotionally, and it\u2019s 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). <\/p>\n\n\n\n

One of the doctors I was talking to one night \u2013 after a particularly rough day of pheresis and dressing changes \u2013 smiled sadly and said \u201cFSGS is a bear.\u201d It\u2019s unlike many other kidney diseases because the cause and mechanisms of it are so unknown. It\u2019s debilitating and devastating. It\u2019s something that he\u2019ll have to navigate for the rest of his life, even when (not if) he gets into remission. I don\u2019t know how we\u2019ll get there, but we will. Somehow. In the meantime, Tim needs as much support as he can get. He\u2019s scared and overwhelmed. If you can, I\u2019m sure he\u2019d 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.<\/p>\n\n\n\n

And, as always, funds are being raised for COTA for Team Timmy to assist with transplant-related expenses. If you can, a donation \u2013 even a small one \u2013 would go a long way to help.\u00a0 Thank you <3<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Tim\u2019s officially 14 days post-transplant. He\u2019d envisioned that he\u2019d 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\u2019s on day 16 of his hospital stay. 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