Tags Posts tagged with "Kidney Disease"

Kidney Disease

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Teresa Orlik, right, with her husband and her son Frank at a recent family event. Photo from Frank Orlik

A Stony Brook man is hoping for a holiday miracle.

Frank Orlik has taken to social media to share his mother’s medical journey. Orlik said he’s been posting about his mother’s search for a kidney donor on Facebook and has been making the posts public with the hope that his connections will share them, and someone will be moved to donate one of their organs.

Teresa Orlik and her son Frank are hoping for a holiday miracle as she waits for a live kidney donor. Photo from Frank Orlik

“This year has been one of so much heartache for me and her,” he said.

His mother, Teresa Orlik, was diagnosed with kidney disease two years ago and recently had to start dialysis. She said the condition runs in her family and was most likely brought on by type 2 diabetes and high blood pressure. Her three sons are unable to donate a kidney since they all have the potential to come down with the disease.

Recently Orlik and her husband sold their house of 46 years in Stony Brook, and they have been living in Palm Coast, Florida, a short distance from the Mayo Clinic in Jacksonville where she is receiving medical treatment.

Dr. Hani Wadei of the Mayo Clinic said when a patient’s kidney function is at or below 20 milliliters per minute, or he or she is on dialysis, a patient can be considered eligible for a transplant.

“We do not have to wait for the kidney function to deteriorate to the point of needing dialysis to get on the transplant waiting list,” Wadei said. “In fact, studies have shown that getting a transplant before starting dialysis is actually better as it improves post-transplant outcomes.”

The doctor said living kidney donors undergo an extensive evaluation which “ensures that a potential donor has a minimal risk of kidney disease after kidney donation.”

The evaluation analyzes potential medical, surgical and psychological complications, and anyone with risks is eliminated, according to Wadei. While a donor may still be at risk for end-stage renal disease, he said recent studies have shown that the possibility after donation is less than 1 percent. The lifetime risk in the healthy population is less than 0.2 percent.

The doctor said he explains to potential donors they can live with one kidney, and they must follow a healthy lifestyle after donation that includes avoiding certain medications, monitoring their health closely and following up with their primary physician. He said after donation the remaining kidney compensates for some of the organ’s function lost from donating the other one.

A donor can live anywhere and have initial blood work and urine testing done by their own doctors and lab services, according to the doctor. However, if they pass initial tests, in the case of Orlik, they must travel to Florida to meet her doctors. A patient’s insurance will usually take care of the donor’s medical expenses for anything involved with the donation, including up to three years of follow-ups.

Frank Orlik said during his mother’s medical crisis he has learned so much about organ donations. For example, he found out about kidney swaps where a living donor is incompatible with the intended recipient, but exchanges kidneys with another donor-recipient pair. Discovering this aspect has made him even more hopeful that his mother will get a kidney.

“I’m praying for a miracle that someone will be able to be a living donor for her,” he said.

Teresa Orlik said her son using social media to spread the word about her search has made her optimistic.

“It gives me tremendous hope that we’ll be successful,” she said.

Anyone interested in helping Teresa Orlik can contact her case coordinator, Tita Bordinger-Herron,  at 904-956-3259.

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Jake Nieto’s research findings have potential to reduce the need for painful kidney biopsies

Dr. Prakash Narayan and Commack High Schoo senior Jake Nieto. Photo from Commack school district.

By Kevin Redding

Most teenagers don’t spend their summer developing new scientific methods that have the potential to revolutionize medical care. But Jake Nieto, a senior at Commack High School, is no ordinary teen.

In 2016, Nieto, a then 15-year-old math and science whiz was looking to spend his summer break continuing research he had gleaned in his chemistry and biology classes. He told his Commack science teacher, Richard Kurtz, who connected him with Dr. Prakash Narayan of Uniondale’s Angion Biomedica Corp., a clinical stage organ restoration company that opens its doors to student researchers.

“He was very precocious. His knowledge and abilities were very advanced for someone his age. If I gave him a problem, it would keep him awake at night.”

— Prakash Narayan

In Angion’s labs, Nieto applied his academic strengths — advanced biophysics, statistical analysis, computation — to an in-depth, months-long project on kidney disease. Despite being the youngest person working at Angion, he often worked four days a week from 8 a.m. to sometimes as late as 5 p.m.

“He was very precocious,” said Narayan, the vice president of preclinical research at Angion. “His knowledge and abilities were very advanced for someone his age. If I gave him a problem, it would keep him awake at night. It’s not like if he couldn’t solve it, he’d let it go.”

Nieto said, as with everything in his life, he was driven by genuine curiosity.

“I just found it so interesting that I could take what I learned from school and finally apply it to actual problems,” he said.

Both of Nieto’s scientific research papers based on that summer’s findings were published by PLOS One, a peer-reviewed, open access scientific journal. The first paper,  published in October 2016, details a formula he came up with and dubbed the “Nieto-Narayan Formula” — that estimates the volume of cysts found in the kidney of a person with polycystic kidney disease.

In a second paper, published this January, Nieto outlined a better approach to determining the amount of scar tissue in the kidney of someone with chronic kidney disease with the aim to alleviate the use of biopsies — the painful process of injecting a long needle through a patient’s back to examine the kidney scarring. For this project, he modified the commonly used elliptical formula in order to obtain more accurate measurements and volume of a kidney.

“I was so excited,” Nieto said. “It was really awesome and humbling to think that something I worked on could potentially be read by other people who are in the field.”

He and Narayan are confident, down the line, that his research has the potential for clinical study and could become part of normal kidney monitoring.

Commack High School teachers Jeanette Collette and Richard Kurtz; Dr. Prakash Narayan, vice president of preclinical research at at Angion Biomedica; and Commack senior Jake Nieto. Photo from Commack school district.

“Jake’s research really opens up the door for noninvasive characterization of kidney disease,” Narayan said. “I believe it can revolutionize the diagnosis and will greatly reduce very painful kidney biopsies. And, of course, for any 15-year-old to walk to spend the summer in a facility here, when other 15-year-olds are doing whatever they’re doing, and achieve this —  I think that’s very remarkable. I’m very proud of him.”

Nieto’s grandfather Ray Ingram, a Queens resident, said he was not in the least bit surprised by this achievement.

“Since he was 4 or 5 years old, Jake was outside looking through a magnifying glass,” Ingram said. “He had a microscope, a telescope, a chemistry set — everything he touched, he took apart and figured out how it worked and figured out a way to improve it.”

At the high school, Nieto is a competitor on the Science Olympiad and mock trial teams. He is president of the Spanish honor society and science honor society, plays trumpet in the marching band, and tutors other students in science and math. While unsure what college he will attend, Nieto knows he wants to study physics and engineering.

When asked if he is ever able to rewire his mind off science, Nieto laughed.

“I try to still have fun and obviously be a normal kid when I’m with my friends,” he said. “But I have my moments where I’ll start looking at something and try to make a scientific connection and be that kind of annoying person. Whenever I see something, I really just want to know why.” 

Arleen Buckley donated a kidney to her husband of 43 years, Tom Buckley. Photo by Erin Dueñas

By Erin Dueñas

Arleen Buckley ticked off the places she and husband Tom had traveled to before he fell ill. The Port Jefferson couple had visited Italy, Ireland and even China, but a planned trip to Belgium last year had to be canceled after Tom’s battle with polycystic kidney disease — a hereditary condition where cysts develop on the kidneys, leading to the organ’s failure — kept him from traveling.

“He was just too sick,” his wife said. “We were lucky we could get him to the corner.”

Tom Buckley spent months undergoing dialysis three days a week, but the treatments left him weak.

“He wasn’t having a good reaction to the dialysis,” Arleen Buckley said. “I told him we can’t live life like this. It was a tough time.”

Arleen Buckley said she couldn’t bear seeing her husband of 43 years so ill. She suggested giving him one of her kidneys to resolve his health issue but he refused.

“He felt guilty. He didn’t want me putting my life at risk,” she said. “I told him I wanted to live a nice long life — but with him.”

It took months but she eventually convinced her husband to take her kidney, and in September of last year, the couple underwent the surgeries.

Arleen Buckley was up and about just three days later, and while her husband’s recovery took much longer — about six months — he said he feels great. They’re even planning a trip to Scandinavia.

“I couldn’t go anywhere, not even to the movies,” Tom Buckley said. “Now that I’m better I can do whatever I want.”

Last Thursday, April 2, the couple attended the Living Donor Award Ceremony at Stony Brook University Hospital, which honored Arleen Buckley and about 200 other kidney donors. Sponsored by the hospital’s Department of Transplant, kidney recipients presented their living donors with a state medal of honor for the second chance at life.

The ceremony’s keynote speaker was Chris Melz of Huntington Station, who donated a kidney in 2009 to his childhood friend Will Burton, who suffered from end-stage renal failure. The surgeries were successful, and Melz now works with the National Kidney Foundation raising awareness for living donors.

“I want to spark the drive for people to do good,” he said. “Giving is a beautiful thing.”

Arleen Buckley said she was happy to give a kidney to her husband, whom she has known for 50 years.

“I told him, ‘When I was 14 years old, I gave you my heart. At 64, I gave you my kidney,’” the wife said.

Dr. Wayne Waltzer, director of kidney transplantation services and chair of the Department of Urology at Stony Brook University School of Medicine, called kidney transplants a “new lease on life” for patients who are on dialysis.

“Transplants restore them,” Waltzer said. “They get back the same sense of well-being they had before they got sick.”

According to the National Kidney Foundation, 118,000 Americans are on a waiting list for an organ —  96,000 of those wait for a kidney. Roughly 13 people die daily waiting for the organ, the group said.

Stephen Knapik, Stony Brook University’s living donor coordinator, said that every 10 minutes someone in need of a kidney is added to that list. He called it an honor to work with donors who keep the list from growing.

“I’ve never been in a room with so many superheroes in my life,” Knapik said. “The greatest gift you can give isn’t a boat or a car, it’s the gift of life.”

Waltzer said that donating a kidney involves meeting certain criteria including compatible blood groups and matching body tissues between donor and recipient, as well as ensuring that the recipient has no antibodies that will work against the transplanted organ.

While he said the surgery is sophisticated, he called the science and medicine an incredible achievement.

“The immunosuppressive therapy is so good and the medication so effective that you can override any mismatches,” he said.

This allows for donors to give to loved ones that are not related by blood.

With the most active renal transplant program on Long Island, Stony Brook has done 1,500 transplants since 1981. Waltzer said that donors are doing an “amazing service,” not just to their recipient but also to one of the thousands of people who are on the waiting list for a kidney.

“There is a shortage of organs,” he said. “By donating, you are giving a chance to someone else on that waiting list.”