Brett Needs Your Help
Some of you know that in late 2013 Brett was diagnosed with a kidney disease called IGA Nephropathy. Unfortunately there were really no symptoms of the disease and it had been undetected for an estimated 10 years or more.
July 21, 2019
Hey, everyone. It’s Sadey. It’s been a minute but I wanted to just post a quick update. I have had a lot of people that I’ve spoken with be surprised that what Brett is dealing with is not just simple leg pain/neuropathy related to his kidney disease. This is not the case. It is much more than just the pain/neuropathy. It is very extensive nerve damage and weakening of his lower extremities. It is not related to the kidney disease. He is assisted with crutches, a walker, &/or a wheelchair if we need to get him more than about 50 feet. Stairs are out of the question at this point. Since Brett was released from the hospital on July 10th, he’s not had any improvements. In fact, his legs have gotten a bit worse. This past week we saw his nephrologist on Tuesday, July 16. He was surprised to see that Brett hadn’t improved and was still very concerned. He set up an appointment for Brett to see the neurologist up at the University for a follow up. Thursday, July 18 we saw her. She was also very concerned about the progression of and the extent of his nerve condition. She put in an order to begin what are called ivIG treatments. This is basically an immune system “mop up”. He’ll need three days worth of these treatments. If we don’t get an insurance approval by Tuesday, she is going to have him admitted back into the University of Utah hospital for those treatments. There’s a lot of gray area filled with details here that I’ll spare you. If these treatments don’t help improve his symptoms, they may try some rounds of hemodialysis (more traditional dialysis that cleans the blood) rather than the peritoneal dialysis he is currently doing at home. So. For now… Still no concrete prognosis or really diagnosis. Could be a more advanced condition than GBS/AIDP. We could potentially be dealing with CIDP which would be a lifetime battle. If we can confirm this diagnosis, we will have been lucky to have so early so that we can get treatments going right away. It’s a lot to take in and we will definitely let you all know when we have more information and lab results. Brett is doing ok. He’s going through a lot mentally, emotionally, and (obviously) physically. He appreciates all of the love and support so much. It means the world to us. Our sweet friends are putting on a fundraiser this Tuesday, July 23 at their snocone shack located at Jakes Brookside in Springville. We thank them so much for their generosity and love. We thank you all, as always for your continued support, the sharing of his story, and your donations. It truly makes such a big impact. We love each and every one of you. Xxoo
July 12, 2019
He’s hoooome!! Ugh what a relief just to be out of that hospital (no offense to the staff- the University of Utah was incredible). Brett is happy to be home in his own comfy space. Still a bit discouraged with his diagnosis. We are going to be spending the next days/weeks getting a handle on making sure he can safely get around with the assistance that he needs. For now it’s a cane but: BIG THINGS ARE COMING… haha you just wait. We see his regular nephrologist next week to just follow up and get him caught up to speed. Brett always wants to make sure that you all know how much he appreciates you. He feels so blessed to have each and every one of you sharing his story, messaging, visiting, and everything else. We love you and will continue to update you as Brett’s symptoms improve and he gets better! Also, we will update you on the status of his potential transplant delay. They want to make sure he can get up and moving for that recovery. Another concern is adding medications following transplant that may worsen his current symptoms. More on that later. Thank you all so much, happy to have him home. Xxoo