Deven Wilson is an athlete who in November 2023, right before Thanksgiving, faced some health issues which ended up becoming life threatening. After participating in an all-day volleyball tournament the Sunday before Thanksgiving, he started to feel “off” the next day. Extreme fatigue and cold-like symptoms were setting in. But they happened in such a quick fashion that something was not right.
We took him to the doctor after Thanksgiving and they said it was “atypical pneumonia” and to follow-up with the PCP in a couple of weeks. He started to cough up blood and was going downhill rapidly. He went to the emergency room and from that day forward life changed for Deven and the Wilson Family.
What was thought to be pneumonia, ended up being an autoimmune disease which at first attacked his lungs but then reached his kidneys. The autoimmune disease, Granulomatosis with Polyangiitis, which is a rare type of vasculitis, triggered a second disease called aHus, a form of TMA, which is extremely rare. Having GPA along with this second disease is rare, but he has a genetic mutation involved that makes his case, “the rarest of the rare”, quoting his doctors.
While waiting on results to see if he had the second disease so it could be treated effectively, he had seizures and ended up in the ICU for almost 2 weeks. His kidneys declined in such an extreme pace that we were told he would end up needing a transplant within a year. It was mind blowing how rapidly this all occurred. This was the scariest time of our lives. Everything was happening all at once to him and it seemed like anything that could go wrong was. He had seizures, colitis, pancreatitis, extremely high bps, fluid in lungs, fluid buildup in body, etc. There was so much more. But somehow, he kept pushing forward and fighting. His strength was and is unbelievably amazing!
He was finally discharged on 2/26/2024. He was not able to go back to school with friends to finish his sophomore year because he was a very sick teenager. He had lost his hair because of the chemo treatments and his critical condition, but we could see him getting better and fighting each day. To others he may have looked sick but to us he looked awesome!
Now on to the new normal. Deven started outpatient dialysis 3/1/2024. Dialysis is hard but it is a life sustaining measure that he needs until he gets a transplant. Robb and I take him multiple times a week to UPMC – Children’s Hospital of Pittsburgh, where he is hooked up to a machine for hours to filter the toxins out of his blood which is something his kidneys are not able to do effectively anymore.
Again, dialysis is HARD and lately it has been very rough for him. He has been getting extremely sick towards the end of each session. He passed out twice this year and was taken to the ER. This was actually a blessing in disguise because it led to tests which showed he has a clot in his heart, likely due to the vascath he has for dialysis. There always seems to be another layer added on to Deven’s diagnosis that we constantly have to address. Honestly, it has been rough since he started his junior school year. Since he is immunocompromised he picks up illnesses much easier than everyone else. It has been a constant battle to keep him healthy.
With that being said, Deven has had an uphill battle staying in school and living the normal teenage life because of his diagnosis. He cannot play sports at the moment but so desperately wants to. He did start work in the Strip District recently and enjoys it but it takes a toll on his energy level. He enjoys hanging out with his friends and really just wants to get back to a normal life and even go on a vacation in the future without worries.
Having a new kidney will give him a second chance at everything he is missing out on right now.
The wait times can be long for a deceased donor. The doctors and transplant team advised us to search for a living donor. Finding a living donor will most likely get him off of the list sooner and on to living his life again. A kidney donation from a living donor often has better outcomes averaging 15-20 years rather than 8-12 years for a deceased donor.
To learn more about living kidney donation or to start the testing process on Deven’s behalf, please visit: https://livingdonorreg.upmc.com/
Please, PLEASE help us find a donor match for Deven. I will be posting on this page often during this process and would appreciate anyone liking and sharing Deven’s Kidney Quest.
Thank you for following and considering giving the gift of life.
