Tyler’s Story

Site created on August 7, 2020

Tyler has known since he was around 12-13 years old he has had polycystic kidney disease. He had blood in his urine after a basketball game and further investigation led to the discovery. He’s never had problems with his kidneys really until the past two years. Polycystic kidney disease is an autosomal dominant disease meaning there’s a 50% chance of having it with any offspring. Tyler’s mom, Barb, went through a kidney transplant 12 years ago. Her daughter, Tyler’s sister, Tabra gave her a kidney and she never had to start dialysis. Tyler and I have always known he would likely need a transplant. We just didn’t anticipate it would happen while he’s still in his 30s! Two-three years ago, Tyler had labs drawn at the school lab fair and at that time the labs indicated his kidney function was starting to decline. He established with a nephrologist (kidney specialist) who has been monitoring his function closer over the past year. Subsequent labs have indicated his kidney function has continued to decrease, more rapidly in the past 6 months. His nephrologist is quite proactive and suggested referral for transplant this past Spring in order to avoid dialysis. Dialysis is an amazing medical tool to keep people alive and functioning when their kidneys don’t work well enough, but it is extremely time consuming-usually 15 hrs per week and physically taxing. We researched transplant programs and decided KUMed was the best choice for us due to location and reputation. The process of getting ready and completing the work up for transplant has been a bit overwhelming along with navigating through the Covid situation. After multiple labs,scans and appointments, Tyler was blessed to have a match in his first cousin, Derek. Derek and Emilee have sacrificed a lot of time this summer to go through the work up to get ready for transplant day. We can never thank Derek enough for this gift he is giving Tyler! We are so thankful for this whole process. It certainly beats being hooked up to a machine 15 hrs per week to survive!

Newest Update

Journal entry by Leah Alpers

Tyler had a follow up appointment this week at KU. He was 5 weeks out from his surgery yesterday. He did have a virus harboring in the urinary system due to all his immunosuppressants, but lab work this week showed the virus is no longer detected. It is called the BK virus and is a virus that is not a big deal for healthy people but could damage his new kidney if it progressed in him because his immune system is so low. They adjusted is immunosuppressive meds and it seemed to take care of the virus. His nephrologist told him he can go down to getting lab work once weekly now which he’s excited about 😊. He has been working every day but just not as long of hours as he is used to this time of the year. He has one more week of weight restrictions. It is still difficult for him to wear jeans and a work belt. Otherwise he is feeling well which makes it hard for him to remember he still has to be careful. The next obstacle will be getting his ureteral stent removed which is in three weeks. The stent has been in place since surgery to keep the ureter, which is the tube that leads from the kidney to the bladder, open so it can heal properly. He is not looking forward to this procedure because it is done without sedation. His nephrologist was even agreeable to do his next appointment with her as a telemedicine appointment. This will save us nine hours of driving!
As always, thank you for your continued to prayers and support.

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