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Oct 27, 2018 Latest post:
10 hours ago
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.
Bryant was first diagnosed with chronic kidney disease in 2010. In 2016, he was diagnosed with a rare disorder called X-Linked Alport Syndrome - a genetic mutation of his X chromosome that affects his kidneys. In May 2018, his kidney function reached the point where he needs a kidney transplant. Blood testing has shown that his mom, Kim, is a compatible match and she went through testing at the end of November to determine whether she will be able to give one of her kidneys to him. At this point, we are still waiting for the outcome of that. Ultimately, we know that God is in control and we trust Him and thank Him for all He has done, is doing, and will do in this situation. We both appreciate your support and words of hope and encouragement.
During Bryant's childhood and early adulthood, he never experienced any symptoms that would indicate any problems with his kidneys, other than one time in high school when he had an isolated episode of high blood pressure that we just thought was a fluke. Then in 2009, Bryant tore his left ACL during an indoor soccer game. Before the surgery, he went for routine pre-op testing, which revealed blood and protein in his urine. He was sent to his PCP, who sent him to a urologist, who sent him to a nephrologist, who did a kidney biopsy, which revealed scarring of the glomeruli, the functional units of the kidney. At age 24, he was diagnosed with chronic kidney disease and he follows up with a nephrologist on a regular basis. His kidney function dropped rapidly at first, but then it basically stabilized with slow reductions in kidney functioning over the years. He continued to have blood and protein in his urine, high blood pressure, high cholesterol, and gout, but he was doing very well and, other than tiring easily, it really didn't affect his lifestyle much at all.
At the end of 2015, Bryant ended up changing to a different nephrologist, this time at the Glickman Urological & Kidney Institute at the Cleveland Clinic, and this doctor wanted to do another biopsy. The results ultimately led to the diagnosis of Alport Syndrome, and Bryant was referred to a doctor who was running a study for people with Alport Syndrome. Bryant was admitted to the study, and as part of the study, he received genetic testing that confirmed that he has X-Linked Alport Syndrome, a genetic mutation of the COL4A5 gene on his X chromosome that causes abnormalities that prevent the kidneys from filtering blood properly. Gradual scarring of the kidneys occurs, eventually leading to end-stage renal failure – with 90% of affected males needing a kidney transplant before age 40. The majority of males with XLAS also develop hearing and eye abnormalities, but amazingly, Bryant does not have any of those issues.
Bryant continued to lead a normal life, and he hoped to get into another kidney disease study at the beginning of this year, but his GFR (glomerular filtration rate – a gauge of how well kidneys are functioning) dipped too low. He continued to follow up with his doctor, and his numbers started dropping pretty rapidly. His GFR was 27 in March, and then it dropped to 19 in May. 20 is transplant level, and 15 is dialysis level. When he saw his nephrologist in early June, the process was started for him to be evaluated and listed for transplant. His GFR is still hanging just above dialysis level, and our prayer is that he will be able to get a transplant before he has to start dialysis, as long-term transplant success and overall physical health are significantly better when the patient has not had to undergo dialysis.