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Residents with kidney disease experience transplant delays

Submitted Photo Pernell Caster, left, with son Grady, center, and wife Cathy, right.

Three-hundred twenty-seven days.

That’s how long Lakewood resident Darlene Morganti has been waiting for a kidney.

“I’ve kept track of the days,” she said. “That’s how long I’ve been on the official waiting list.”

Kidney disease runs in Morganti’s family — her father had a transplant when she was 16 and she, herself, has experienced increasingly low kidney function for the last eight years.

So, when she shared her story with WIVB Chanel 4’s Angelica Morrison in February, she was overwhelmed to find out that there were several potential living donors who had stepped forward to be tested.

“It brought out some people,” she said. “I couldn’t even believe people would do this for me.”

One month and a global pandemic later, everything changed.

“Now everything is at a halt and I’m just scared that everyone is going to forget about it, not just for me but for other people in the same situation,” said Morganti, one of several transplant candidates whose progress on receiving a new kidney has been halted due to hospital restrictions caused by the outbreak of COVID-19.

Frewsburg resident Pernell Caster hasn’t had to wait as long as Morganti, but learned earlier this year that he was in Stage 4 kidney failure. Twelve candidates have stepped forward to be tested to see if they are a match, but the virus has delayed that process as well.

“At his evaluation, they will assign Pernell a coordinator and a coordinator for anyone who wants to be tested to be a donor for him,” his wife Cathy said, noting that they have been able to keep in touch with doctors via telemedicine. “Because of COVID, our initial meeting with (UPMC) Hamot to start that process got pushed from March to June. We’ve just lived in limbo for the last couple of months.”

“Luckily, through all of this, his numbers are right on the point where he has enough function still going on in his kidneys that he hasn’t needed to have dialysis yet,” she added.

And though he has not yet started dialysis, Pernell said the last several months have been trying.

“Since my kidney function is kind of right on the line, you’re just kind of playing teeter-totter,” he said. “With my health, every morning, I throw up. For quite a while, I don’t feel even remotely decent until about noon and by then, we’ve probably gotten most of the toxins out of me. It’s awful. Truly.”

“With his kidney function going down, it’s affecting how he is metabolizing his insulin, so he’s had higher blood sugars and cause other problems in other places with his eyesight and circulation to his feet,” Cathy said of Pernell, who is also diabetic. “At this point, everything is kind of affecting everything.”

Dr. Amit Tevar, director of the Kidney and Transplant Program for the UPMC system — in which UPMC Hamot in Erie is a participant — said that transplants for those with end-stage kidney disease have continued with certain precautions. As a result, only nine kidney transplant procedures have taken place at Hamot, with only one coming from a live-donor candidate.

“We did come up with a very detailed plan early, early on in the COVID experience which was very tiered toward the incidents and maximizing the safety not only for our personnel but also for our patients,” Tevar said. “That being said, we did implement very early testing of these patients that were coming in for a transplant and we actually found that, based on our incidents within this area, and at both hospital systems, we were actually able to offer a very safe transplant to our patients.”

That transplant, while safe, did take some time at first. But, according to Tevar, his team has taken steps to make it as robust as possible and, as hospitals restart elective surgeries and procedures that could aid the process in testing donors, has managed to eliminate delays.

“It is very systematic,” Tevar said. “When we first did it, it did take some time, there were some delays and at the end of the day, I do think that everyone was okay with that. That delay is to ensure the safety of our patients and our providers and everyone is very okay with the delay to get testing done. We’re pretty routine with it and we’ve really had no issues with people getting tested. We don’t have any more delays and we have plenty of tests and we know how to do it quickly and efficiently in a very pragmatic way.”

Encouragingly, the Casters’ June appointment is still on track.

“That’s going to be a half-day evaluation,” Cathy said. “We’re just still at the point where we all don’t know what’s going to happen. We just know that we need to make this appointment with the transplant team to happen so that we know where to go from here.”

Meanwhile, Morganti’s daughter will be tested on Monday to see if she’s a match. Her daughter-in-law is also scheduled to be tested in July.

“My son wasn’t a match and my husband wasn’t a match,” she said. “They have to also make sure that my kids don’t have the protein and my son did not, so now my daughter is going to get checked. That’s reassuring that they’ve at least opened up enough to check them out.”

At the same time, both Caster and Morganti have created profiles on The Kidney Connection website, founded over a decade ago by Jeanette Caprino as a way to help connect living donors to recipients.

“My job is just helping to find living donors and get them off dialysis,” said Caprino, whose son Paul Cardinale successfully found a donor in 2006. “There are so many people in our area living on a machine. There’s no cure but you can save their life by donating one of your kidneys.”

That includes Morganti, who has been able to do her peritoneal dialysis treatments at home. Though designed to be done overnight, she has had to do them during the day because she does not sleep well.

“I usually try to do it around 3 or 4 p.m. and the doctor has agreed to let me do it for six hours,” she said. “So far, it’s working okay. Still, it’s hard because it takes up most of the day and I have to take the whole cart into the kitchen if I want to cook dinner or do dinner, because the tubes aren’t long enough to move around my house freely.”

Still, equipped with a solid support system, she is remaining optimistic.

“I just have a lot of faith. I’m just trying to keep my spirits up and hopefully whatever people were interested back in February will still be interested in me and everyone else that is waiting,” she said. “We’re all in the same boat.”

“We just have to keep the faith,” Pernell added. “This is probably going to end soon and we can move on with our lives, but we can’t let it define us.”

Additional information on Darlene and Pernell can be found at kidneyconnection.org.

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