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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 needed a kidney transplant. Blood testing revealed that his mom, Kim, is a compatible match. She went through testing in November 2018 and was cleared for donation. The transplant surgeries were performed at the Cleveland Clinic on May 13, 2019. 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 had hoped to get into another kidney disease study last 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. It took almost a full year, but at long last, the transplant was performed on May 13, 2019. Bryant was able to avoid dialysis altogether, which is a huge praise. So far, things are progressing well as he starts the post-op recovery phase of this journey.
Just a quick update. Today makes 6 weeks since the transplant surgeries. Bryant is doing well and is back to work. He continues to get blood work done regularly to check on everything as his body finds its new normal. He has experienced some side effects from the medications, but nothing too troubling so far. In general, he says he feels "fine".
I am also doing well. I went back to work on the 5th and am making it through the 10-plus-hour days okay, but my energy level is still not quite back to normal and I am beat by the time I get home. I still struggle with nerve pain in my entire left abdomen and the one spot in my left thigh, which is mostly aggravated by shirt side-seams rubbing on my skin and scar, and riding in a car over bumpy country roads. The doctor said it can take up to 6 months before it totally goes away, and it really is getting a little better each day.
All-in-all, we are both doing well in our recoveries and look forward to returning to "normal" over the next few months. We really do appreciate all of your prayers, thoughts, and support. Thank you all for caring!