It’s Fall in Cleveland. By now we’ve usually got two sports teams to be disappointed in and we turn our eyes to college football. This year, however, the Browns are the bright spot while the Indians and Buckeyes are testing our patience. The other fixture for Clevelanders in fall is the Northeast Ohio Walk for PKD! I post about it every year. This year is different in that it will be a virtual walk, but we are hoping that doesn’t mean people are socially distanced from their pocketbooks. Please check out Team William (we’ve already raised $690!!!) and my personal fundraising page. I’ll also be tweeting and LinkedIn-ing (?) … uh … posting on social media tidbits about PKD throughout the week so if it feels like I’m louder than usual, I am! This is an important cause to my family and to me. Below is our story:
William was born in 2010 with Autosomal Recessive Polycystic Kidney Disease, or ARPKD. We spent his first days with him in the neonatal intensive care unit (NICU). He was in a plastic box and a machine was helping him breathe. These were critical days. We couldn’t hold our son. He was cradled by a tangle of tubes and monitoring cables. Most of all, the sounds will stick with me. The beepbeepbeepBOOP alert of his pulsox unit, the inflating of the blood pressure cuff every 15 minutes, and assorted klaxons and pings haunt me. You wonder if this alert is the big one. What’s wrong? And we were powerless to do anything, wondering if our presence in the room was at least some comfort to our little guy.
The doctor refused to give us odds, only saying that it was up to William and how much fight he had in him. If the picture above wasn’t enough of a spoiler alert, this kid is a fighter. It was a struggle getting each tube and monitor removed, but William refused to give up. We were finally able to bring him home, but his ARPKD advanced. William had his first kidney removed in August of 2010. The second one was removed that December. We spent Christmas learning how to perform daily peritoneal dialysis. This process would act in place of his kidneys until William was big enough for a transplant.
After some testing, we found that I was a nearly perfect match to donate a kidney to Will. When he was big enough, I went through several screens to make sure everything was a fit. Vials and vials of bloodwork confirmed the good match. Just one last test to pinpoint the infrastructure of my kidneys and we could schedule the surgery.
The image showed that my kidneys were too big. Specifically, I had extra arteries leading to my kidneys and his little body wouldn’t be able to handle them. I was heartbroken, but the doctors assured me that I’d be able to donate if he needs a kidney when he gets older.
William was put on the transplant list and after some false starts received a kidney just after his second birthday. The kidney made a huge difference for all of us. No more dialysis, energy levels improved, and overall quality of life is just better.
William is into cars and trucks, roughhousing, and is an avid reader. He takes a couple of handfuls of pills every day, but that does not stop him from hamming it up or singing along to songs on the radio.
Our story has a happy ending. Advancements in research and treatment are what allowed us to have a story at all. The really cool thing is that medical technology is improving at an incredible rate. You can be a part of making this happen by donating to the Northeast Ohio PKD walk. The PKD foundation will put your donation to work on curing this disease. Thanks for taking the time to read our story and please keep William in your prayers.