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Deceased kidney donation fuels quality of life after kidney transplant

Patient Spotlight January 05, 2022 By Main Line Health

It started off as feeling cold all the time, even when the weather was warm. William Sweeney also couldn't find the energy for much of anything.

"I was exhausted all the time and would sit down and fall asleep," he says. "I was quite concerned."

William has three daughters who are nurses. One day when he came home exhausted, one of the daughters arrived and said she was going to take him to the emergency room. She could see something was wrong.

In the emergency department at Lankenau Medical Center, the medical staff performed a number of tests and ultimately decided to keep Sweeney overnight. When they checked his kidneys, it was determined he had stage 4 kidney failure.

Sweeney's nephrologist at the time was a former Lankenau physician named Keith Superdock.

"He explained that my kidneys weren't working the way they were supposed to," says Sweeney. "They only had about 20 percent function. I asked if they would ever come back and he said no. They would not rejuvenate. I would have to go on dialysis, right away."

From kidney dialysis to new hope of kidney transplant

Sweeney would be on kidney dialysis for four years and one week—an enormous commitment of time and energy. He went three times a week to Lankenau for four hours at a time.

Then one New Year's Eve when all the family was gathered at his house, it was shortly after midnight when everyone had left except his youngest son and wife.

"They wanted to talk to us about something and took me and my wife into kitchen. My daughter-in-law started naming people at the kidney dialysis unit. She'd been going there and getting tested for several weeks. I said, 'How do you know all these people? Why are you going there? Are you having problems?'"

"I'm going to give you a kidney," she said.

"I didn't know what to say. I said, 'I really can't accept that.' And she said, 'Well you're going to accept it.'"

According to Donate Life Pennsylvania, there are currently 7,000 people in Pennsylvania waiting for kidney donation and transplant.

Sweeney's daughter-in-law explained that everything was already set up. Everyone at Lankenau knew that she was planning to donate a kidney to Mr. Sweeney and they just needed to schedule a kidney transplant date.

This type of arrangement is called living donor transplant, when the person receiving the kidney receives it from a person who is still alive and is giving up one of their two kidneys.

Sweeney was in awe but still had reservations. What if down the road one of her own children needed a kidney?

"This kidney disease is in our family big time," he explains. "I already had two brothers who had transplants before I was ever diagnosed, I have eight cousins who've had kidney disease and have had transplants already – out of the same family of 18 people. One of them passed away of cancer a few years ago but 17 of them are still alive. Their mother – a first cousin of mine – had the first kidney transplant in Ireland years ago."

"This kidney disease is in our family big time," he explains. "I already had two brothers who had transplants before I was ever diagnosed, I have eight cousins who've had kidney disease and have had transplants already – out of the same family of 18 people.

But the son and daughter-in-law persisted and one day made plans to go with Sweeney to Lankenau to meet with the kidney transplant team about scheduling the transplant. It was early-February and they set a date for March 18, 2014.

Change of plans: From living donation to deceased kidney donation

Early that March, Sweeney got a call from his sister-in-law in New York. Her youngest son, Tom, had a brain aneurysm that burst and he was on life support at 36 years old. Sweeney and his wife and kids headed straight to New York, joining the rest of the family who were looking over his young nephew in the hospital room.

Plans were already being made to turn off the machines and discontinue life support.

Sweeney continues, "'You know Tom's a donor,' my sister-in-law said. 'When his organs are removed, a kidney is supposed to go to you—if it's a match.'"

At this tragic turn of events, it looked like Sweeney might get a kidney sooner than expected. It would come from his own flesh and blood and his daughter-in-law wouldn't have to sacrifice herself for him.

Quality of life after kidney transplant, better than ever

The hospital in New York coordinated with Lankenau Medical Center regarding potential deceased kidney donation and kidney transplant. In case the nephew's kidney was a match, Lankenau asked Sweeney to come in early the next morning for a complete blood workup and preparation for transplant. They released him in the afternoon and would let him know by evening what was happening.

"Around 6 pm my phone rang and it was Lankenau telling me we have a match. It was my nephew, it was a complete match. The kidney would be sent down from New York the next morning and they would do the operation."

Sweeney had one more dialysis treatment the next morning and went in for surgery in the afternoon.

"I had my new kidney by 7 or 8 pm on a Tuesday night. That was two weeks before I was scheduled to have the surgery with the kidney from my daughter-in-law. I was released from the hospital on a Friday and I've never had a problem since."

Sweeney talks excitedly about quality of life after kidney transplant, listing the hallmarks of successful kidney transplantation and good health:

  • He's on the lowest dose of transplant rejection medicine.
  • His blood pressure is just about perfect every time gets it checked.
  • Umber Burhan, MD, whom he sees every three months, tells him he's doing great.

Not to mention, he has plenty of energy and his eyesight improved after kidney transplant surgery.

Plenty of energy and improved eyesight are just two of the benefits since kidney transplant for William Sweeney.

"Being on dialysis and having kidney failure, my eyesight got very bad. There was a lot of fluid in my eyes so I used to go to the hospital where they'd put shots in my eyes to try and draw it out. I'd get a series of shots, once a month for six months, but it didn't help. As soon as I got the transplant, funny enough my eyes started clearing up. I always wore glasses before that and now I only wear them for reading."

With improved kidney function—the kidneys being where toxins and waste get effectively processed and flushed out of the body—fluid buildup in places like the eyes is no longer a daily health problem for Sweeney.

"Tom saved a total of eight people who received his organs and he had chosen to be a donor simply because his dad was a transplant recipient himself—so he knew, he understood the importance of organ donation. Everybody ought to be a donor."

And not being exhausted all the time is nothing short of miraculous for Sweeney.

"My energy level is great and I just can't believe it. I don't have an ache or a pain. I can move around and I'm always on the move."

Sweeney feels grateful to still be here with his wife and daughters and 17 grandchildren, but he's especially thankful for his nephew whose deceased kidney donation gave William the quality of life he now enjoys.

"Mr. Sweeney's story is remarkable for many reasons," says Cara Marasco, manager of kidney transplant and acquisition for the Kidney Transplant Program at Main Line Health. "People with kidney failure often suffer for years and miss out on doing things they love to do in life. Kidney transplant is the optimal solution for patients with this long-term condition, but unfortunately there are not enough kidneys available for transplantation. That's why organ donation is such an important aspect of advance care planning. Plus, it's so easy to do, you just say 'Yes' on your driver's license application!"

"It's bittersweet to get my nephew's kidney, such a shame he had to lose his life. Tom saved a total of eight people who received his organs and he had chosen to be a donor simply because his dad was a transplant recipient himself—so he knew, he understood the importance of organ donation. Everybody ought to be a donor, I'm just so thankful."

January 8 or 1/8 has been declared PA Donor Day. The 1 and 8 are significant because one donor can potentially save up to eight lives through organ donation while enhancing dozens more lives through tissue and corneal donation.

Find out more about organ donation and how you can make a difference.

If you are in need of kidney transplant, your journey starts with an evaluation to determine if you are eligible for a transplant. Call 484.476.8485 to schedule an appointment with our Lankenau-based team.

Read more kidney donation and kidney transplant patient stories.