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'My son needs a kidney'

Adam Gusick playfully tussles with his 4-year-old son, Gabriel, in the cozy living room of his mother’s Lansford home.

A son he desperately wants to be able to live to see grow up.Adam, 26, tires easily. With his kidneys functioning at just 11 percent, he suffers from fatigue and shortness of breath.He needs a kidney, and soon.His mother, Theresa Gusick, and her sister, Debbie Cipko, of Sinking Spring, Berks County, are going through medical testing to see if either qualifies as a donor.As Adam’s kidneys continue to fail, Theresa’s dread darkens.Desperate, she is reaching out through social media and has even placed a plea on the back window of her car seeking potential kidney donors.Adam is embarrassed at the attention. He doesn’t want to be known as “the sick guy.”“I told her, don’t put stickers on your car, and she wanted to put a sign on the house,” he says.“You’re my only child, I love you,” Theresa says quietly.Signs of troubleKidney disease often has no symptoms; victims don’t know their kidneys are failing until it’s too late.For Adam, the signs appeared last year, in the form of fatigue, headaches, and shortness of breath.“I was just getting sick more often,” he says.Last June, he went to his doctor, where a blood test revealed a high potassium level.“He sent me to the emergency department, where they eventually did a biopsy. They figured out my kidney function was low,” Adam says.Looking at the biopsied material, the doctor said there was so much scarring he was unable to determine exactly how the damage occurred.However, too many over-the-counter NSAIDS — nonsteroidal anti-inflammatory drugs like ibuprofen — may have damaged Adam’s kidneys over time.He also had high blood pressure that went undiagnosed for years.Now, Adam is on a number of medications to control his blood pressure and a pill he takes when he eats to bind the phosphorous in food to carry it out of his system.“I can’t have a lot of that because my kidneys can’t filter that out,” he says.“I’m tired a lot, and I have shortness of breath,” Adam says.Running out of timeAdam, who has a degree in electrical engineering, was an electronics technician in Allentown until the company moved to Mexico a couple of years ago.The disease has progressed faster than doctors had first thought it would.He needs the kidney within six months to a year.On Feb. 24, he had surgery to implant a port for dialysis.“Every time he goes to the doctor, his function is down,” Theresa says. “They estimated it at 20 percent, then they did the biopsy and it was 15. Now it’s at 11 percent.”He’s on the list for a cadaver kidney, but that could take four to seven years, he says.Mom steps upFinding a living donor is difficult, so Theresa and her sister are undergoing tests to see if they could be candidates.“When we first went to the doctor, he said mothers are not necessarily good matches because of antibodies,” Theresa says.“So I didn’t really think about it. Then my sister wanted to go, and I thought I would get tested anyway. It would be good to know (if she could donate) because God forbid something would happen.”Working with the Lehigh Valley Health Network’s Transplant Center of the Lehigh Valley, the sisters have both undergone numerous medical tests, and still have more to do before they know whether either or both would be candidates for donation.“There’s a whole list of tests you have to go through to find out if you can be a donor,” she says.She schedules the tests on her days off from her warehouse job.The transplant center gave them materials to distribute to would-be donors.A single mother, Theresa often worked two or three jobs at once to give Adam what he needed.“I want to do whatever is best for him. I don’t want him to be sick,” she says.“You don’t want your kid to die before you die,” Adam says.Seeking donors“I never realized there are that many people out there who need kidneys,” Theresa says.In the event that neither she nor her sister could donate a kidney, Theresa is seeking candidates through Facebook, creating a page called “Kidney for Adam.”She even placed a plea on the rear window of her car.The message has drawn a couple of responses; Theresa has given them the number of the Transplant Center to they could start the process of testing.But there are no guarantees.“They can stop at any time,” she says. “They don’t have to follow through with the donation if they decide at any point, even the day of surgery, that they don’t want to do it.”The good news is that donors don’t have to take a financial hit for their generous gift.“For living donors, virtually all expenses are paid for by the transplant center,” says Dr. Michael J. Moritz, Chief, Transplant Services, Lehigh Valley Health Network.“Virtually all include the entire work-up for donation, specifically blood and urine tests, ultrasound, X-rays, consults with other physicians and anything else medically needed to assure donor health and safety; the entire hospital stay including anesthesia, surgeon, and any other physician fees; post donation care,” he says.“What is not paid for? Transportation expense for the work-up, hospitalization, and office visits. The prescription for pain meds, usually about $10, is often not covered, and over-the-counter meds such as Tylenol and laxatives are not paid for.“For higher expenses, for example, long distance travel and lodging, the National Living Donor Assistance Center

https://www.livingdonorassistance.org/ is available to help with financial assistance via a need-based mechanism,” Moritz says.“All of the donor expenses are accounted for and paid back to the transplant center either from the recipient’s insurance or through Medicare via separate, complex mechanisms,” he says.For Theresa, the donation of a kidney for her son is priceless.“As a mother, I’d never wish to have anyone see their child in pain, no matter what the age,” she posted on the Kidney for Adam page. “I feel helpless and utterly useless. All I can do is be here for him, praying.”

Theresa Gusick has decorated her car to bring awareness to her son's needs. CHRISTINA PARKER/SPECIAL TO THE TIMES NEWS