As 20-year-old Kyle Park plays video games on his laptop and chats with his mother, something rather remarkable is happening within his body.
As part of a clinical trial, his blood is being purified through the Liposorber LA-15 System, removing malignant lipoproteins from circulating blood flow, rapidly reducing the bad cholesterol level of his plasma.
The hope is that after 12 treatments (lasting about 3 hours each), Kyle will be put in remission from a disorder called idiopathic focal segmental gomerulosclerosis (FSGS).
“Kyle has a rare kidney disease resulting from scar tissue in the kidney’s filtering system, the glomeruli,” said Dr. Rupesh Raina, a nephrologist at Akron Children’s. “This part of the kidneys helps get rid of harmful waste materials in blood. If the filtering system doesn’t work properly, it leads to kidney disease or even failure.”
Akron Children’s is the only site in the state and only the third in the country to be part of this clinical trial, sponsored by Kaneka Pharma America LLC, evaluating the Liposorber LA-15 on pediatric patients (up to age 21). The device was first used in the United States to treat people whose very high cholesterol put them at significant risk for heart disease.
Kyle, who was diagnosed with FSGS in 2008, was out of treatment options. The medications he is taking are taking their toll on his body.
The side effects of the medications have caused other diseases such as diverticulitis, gout, malnutrition, and chronic pain – greatly limiting the activity of a young man who would love nothing better than to be back-country camping or working in his family’s 3-acre yard and garden in North Royalton.
“Kyle was never sick a day in his life until his kidney problems developed,” said his mom, Ginny. “Now, his health problems are mostly due to the toxicity of the medications to treat the kidney problems. We are hoping this will allow him to get off all his medications except prednisone.”
Kyle’s kidney problems began at age 13. He was an active child, a Boy Scout who went on to achieve Eagle Scout status. He loved being outdoors. His first symptom was generalized swelling. A trip to the doctor, blood tests, and a kidney biopsy led to the diagnosis of FSGS.
According to Dr. Raina, Kyle is not a good candidate for a kidney transplant because the FSGS is likely to reoccur in the transplanted kidney.
Yet, Kyle is a perfect candidate for this clinical trial and new treatment that will cleanse his blood. Remission for FSGS means Kyle will be able to hold off further loss of kidney function.
Despite finding himself a young adult with chronic health issues – he is also set to have surgery in January for diverticulitis – Kyle remains upbeat. Kyle and Dr. Raina, nurses Julie Mate and Jim Flanagan and clinical research nurse Samantha Formica have an easy-going rapport as they go about operating the Liposorber machine and collecting data.
Kyle is writing and hoping to publish a fantasy novel. He passes the long hours in Akron Children’s nephrology clinic playing video games and clearly relishes being part of a close-knit family.
In late October, Kyle was granted a “Make-a-Wish” trip. His wish was visiting the Lego corporate headquarters and the original Legoland in Denmark. A life-long Lego fan, Kyle lobbied hard so that his 3 older sisters – Kelly, Karla, and Karmen – could join him and their parents on the 7-day trip.
Although he likes to tease his sisters, it was more important to him to share the experience with his whole family rather than simply check something off his own bucket list.
As he approaches his final treatments, Kyle is optimistic about his future.
“I already feel like I have more of an appetite and maybe more energy,” he said. “On my next visit, Dr. Raina and I will talk about taking me off some of my medications. My health problems have prevented me from doing a lot, but my hope is to be able to be more active again, get a job, be able to camp more.”
Kyle said he is glad to be part of a study and hopefully something can be learned from him to help other patients. But mostly he just wants to live a more healthy life.