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R.I. teen awaits life-saving kidney transplant
Originally Posted Online: Dec. 27, 2008, 8:36 pm
Last Updated: Dec. 29, 2008, 12:45 pm
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Print this story | Email this storyLast Updated: Dec. 29, 2008, 12:45 pm
By Dawn Neuses, dneuses@qconline.com
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Additional Multimedia: Video interview with Steven Rench ROCK ISLAND -- He likens his condition to a wave-- one that comes, breaks, then goes away. Steven Rench is 13 and has end stage renal disease, but like water, he flows over anything in his path. He doesn't worry about the kidney transplant he must have, or the fact that he'll eventually die if he doesn't get one. He smiles easily, laughs more easily and loves mashed potatoes. He is a video game fan, has trouble with seventh-grade math and plays with his mother and father as a child would with best friends. He also has a catheter jutting out of his stomach and a dialysis machine next to his bed. Every night, he connects the dialysis machine with a tube that stretches about 7 feet, one that curves around his body as he tosses and turns in sleep. He disconnects every morning, tapes the catheter so it lays flat on his stomach, and goes to school. His friends don't know. His teachers don't know. "They'll ask too many questions," he says to explain the silence maintained so far about his condition. He decided to do this story because he doesn't have to do the announcing. He said his friends will read it and already know what is going on, leading to fewer questions for him to answer. His parents, Joe and Barb Rench, say they admire their son enormously. "How he can do this without any tears, he's just a strong little boy," said Mrs. Rench. "I can't imagine anything happening to him, even though it is a real possibility. But Joe and I try not to think about that part," she said, leaning in and lowering her voice to a whisper, "or all we'd be doing is crying." 'Get him to the hospital right now' Steven was born with a disease called Focal Segmental Glomerulosclerosis, or FSGS. According to the NephCure Foundation, it attacks the kidney's filtering system, causing serious scarring. The Renchs were told that Steven's kidneys would fail, just not when. "When" turned out to be the summer of 2008, though the Renchs didn't realize it as first. They attributed his lack of appetite and weight loss -- he went from 85 to 71 pounds over a couple of months -- to the changing body of a teenager. In August, though, Mrs. Rench began prodding Steven's doctor with questions about the weight loss. The doctor sent a sample of Steven's blood to University of Iowa's Children's Hospital in Iowa City on Aug. 25. At 2:15 p.m. that day, as the Renchs waited in their car outside of Rock Island's Washington Junior High for Steven to get out of school, Mrs. Rench's cell phone rang. It was a receptionist from Children's Hospital calling. "She asked what time does Steven get out of school? I said, 'In five minutes.' She said, 'We need him up here right now. He needs to be admitted. There is something wrong with his blood work'." The receptionist didn't explain further. Mr. Rench took Steven to Iowa City and Mrs. Rench stayed home with their other son, Joey, 11, who has special needs. Steven remembers one thing more than any other about the hour-long ride -- he and his dad stopped for a chocolate milkshake on the way. "A roller coaster' At the hospital, Steven was given two units of blood because he was anemic. At 2 a.m. he went into surgery to get a catheter in his neck for hemodialysis – a process that pipes the blood outside the body, cleans it and returns it. "We thought they'd do some lab work and he'd be in the hospital overnight," Mr. Rench said, but one night turned into another, then another, then another. "It has been a roller coaster ever since," he said. Three days after Steven made the trip, Mr. Rench -- still in Iowa City while Mrs. Rench cared for Joey at home -- called with the news that Steven had end stage renal disease. The worst flashed into her mind. "When you hear end stage, you think he's going to die. No one explains things to you until you are there at the hospital. I'm thinking that he's going to die before I get to see him again," Mrs. Rench said in a December interview. Steven, sitting in the chair next to hers at their home in Rock Island whispered with a slight smile,"She didn't think that." "What was I thinking?" Mrs. Rench asked with a laugh, leaning toward him. "What was I thinking?" "You were thinking about a big bowl of chocolate," he said in a big voice, breaking into a laugh that meshed into hers, deflecting the pain she felt into something he knows she loves. Bear his weight Before he got sick, Steven would kiss his mom good night and tell her once a day he loved her. Now, he frequently walks to her and, without a word, slips onto her lap. "He tells me he loves me all the time," Mrs. Rench said. Steven protects his mother as much as she protects him. She has Charcot Marie Tooth Disease, which affects all of the nerves in her body, making it hard to move at times. When she is having trouble walking, Steven will get up and offer his mom his shoulder, wanting to bear her weight. But she'd rather bear his weight. "I told him, if I could donate a kidney to you, I'd do it in a second. I'd give you my kidney right this second so you could live a normal life," Mrs. Rench said. But she can't. She takes medications daily which prevent her from donating a kidney. It is the same situation with Steven's dad, who has high blood pressure. Mrs. Rench tries to stay strong but cries at night when the boys are asleep and she's in the bathtub. She doesn't think Steven feels the same pain. "He doesn't even seem like he's sick. I don't think he cries in his bedroom. I'll go and check on him before I go to bed, and he's sound asleep, usually with a book on top of him," Mrs. Rench said. Then she goes into her own bedroom, lays down and prays to God. "I ask Him to please watch over Steven and allow him to wake up in the morning feeling fine." Dialysis a bridge to life The waiting room at the University of Iowa's Children's Hospital Pediatric Specialty Clinic is packed. It is almost a half-hour past Steven's scheduled 10 a.m. appointment on Dec. 4. He and his mother sit side by side – Steven slouching -- watching Charlotte's Web on TV. His dad and Joey sit nearby. Mrs. Rench tells him to sit up straight, and as he does, she puts her head on his shoulder. The appointment is one Steven has monthly with Dr. Patrick Brophy, associate professor and division director of peritoneal nephrology transplantation and dialysis at University of Iowa's Children's Hospital. They talk about his condition and how he is managing it. Dr. Brophy tells them that at Steven's next appointment in January, they'll meet with the transplant team -- the surgeons, social workers and a psychologist. They'll do viral and clotting studies and make sure all of his health issues – including dental -- are addressed. Dr. Brophy, in an interview, said Steven's illness is deadly. "Without kidneys you can't live. Dialysis is bridging his life." But dialysis does not replace all of the functions of the kidneys, which not only clean the blood and get rid of waste products, but make a hormone that controls red blood cell development and bone growth. Lifetime dialysis then, while an option for elderly patients with only five to 10 years to live, offers no permanent hope to pediatric patients such as Steven. Steven will soon be on the transplant list for a donor, likely to be someone who dies and donates organs since Steven's family are all unsuitable donors for various health reasons. Children get preferential treatment and go on the list above adults, Dr. Brophy said. Usually, most children get a transplant within a year and Steven should be O.K. during that time because he is doing well on dialysis now. A new kidney will give Steven a full life again. "It'll return him back to being a functional, and relatively normal young man doing the things his peers do without having to be obligated on a machine every night. It'll also give him a much larger responsibility for his health care," Dr. Brophy said. If Steven doesn't take his medications after the transplant, he will lose the kidney. He will also be at increased risk for infections. But Steven is managing his health well, as he takes his medications on his own and hooks himself up to the dialysis machine at night. It is something Dr. Brophy said is unique. "He's a great kid, Steven. They don't have a lot. He's done very well," he said. "You have to wonder how a fellow like this can do, and how far he can go, without this disease." His own man Mr. Rench, hugging Steven recently, can feel his son flourishing. "He's finally starting to take off and grow," Mr. Rench said. The dialysis is working. In four months, Steven has gained back the weight he lost last summer, and then some. Mr. Rench describes his son as energetic, outgoing, ornery at times, and strong. Not only does the teen love sports, "within himself, he's strong. He is his own man. He's got inner strength. It is there. There are not too many things that shake him up," he said. Mr. Rench has fears about the transplant – that it won't take or somehow, Steven will be in worse condition than he is now. "I'm most afraid by what I don't know," he said, adding he'd like to learn more from the transplant team about the statistics and the procedure. Mr. Rench works second shift as a mechanic for Quad City Garage Policy Group, where he works on METRO buses. He and Steven are "buddies," he said. They play Wii sports and racing games with Matchbox cars. Mr. Rench likes to take both the boys sledding on the tobaggon and they often go bowling on the weekends. Mr. Rench said Steven's illness has deepened the bond among all four of them. "I think when times are easy, it is easy to forget what is important. And when reality hits, it is reality," he said. He reminds Steven frequently he is there if he needs to talk. "I want to make sure he knows he has people around him who cares about him." Steven hasn't taken him up on his offer. More than anything he wants his son healthy and happy. "I want him to regain the part of his life that is impeded by this disease," Like a wave Steven wonders if everything will be the same, or different, after his transplant. But he doesn't worry about the procedure or the fact he is in renal failure. He doesn't think about dying. He is matter-of-fact about what is happening with his body. "I have bone disease, kidney disease, high cholesterol and I'm anemic," Steven said, adding he does not feel sick. "Really, I just don't think about that stuff," he said. What Steven does think about is going outside, playing sports, racing cars, the day trips his family takes on the weekends and beating his little brother at video games. What he doesn't say is the catheter jetting out of his belly bothers him. But on gym days, he wears his gym shirt underneath his regular shirt so he won't have to change in front of the other boys. Steven looks forward to the day he can eat a plateful of mashed potatoes again – as now he has to watch his diet – and can go to bed without hooking up to a machine. "That'd be fun, just going to bed," he said. Steven is active. This summer, before he was diagnosed with renal failure, he'd get into his red and yellow baseball shirt, go to Hodge Park in Rock Island, and play shortstop or second base for his team. He likes playing football and still play-wrestles with his brother. In March, Steven will likely be taking a Disney cruise thanks to Make A Wish, and looks forward to meeting Mickey Mouse and having Goofy wake up the family for exercise class. "What is there to be sad about?" Steven said. "Nothing. Stuff happens and you have to go with the flow. It is like a wave. It always comes but it always goes away. You never see the same wave twice." 
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