Maine Transplant Program Box

About 65 patients a year receive transplants through the program. Transplant Coordinatior Roxanne Taylor, a registered nurse, said about 50 percent of organs come from living donors, usually a family member or close friend.

Organs are collected and distributed regionally from a nationwide program called the United Network of Organ Sharing. Maine is a part of the New England Organ Bank, which also includes Connecticut, Massachusetts, New Hampshire and Rhode Island.

Taylor said for patients like Kevin Sweeney, with blood type A, finding a kidney generally takes about six months. Somebody with a rare blood type like O or B, could wait as long as six years.

Kidney transplants, unlike heart or lung, are primarily based on seniority, rather than organ fit, or severity of patient sickness. If you’re 45th on the list, you wait until the 44 people ahead of you have received their life changing call before it’s your turn, regardless of how sick you are.

There are exceptions for exceptional organ matches, said Taylor. However, it’s not as important for a kidney as it is a heart to be a certain size. The heart of an 80-pound woman would not pump enough blood through the system of a 250 pound man, said Taylor.

Fact Box

In Maine:

130 people are waiting for a kidney transplant.

950 people are currently on dialysis.

54 people, on average, receive a kidney transplant each year.

1 in 9 people, over the age of 20, has kidney disease and does not know it.

From the National Kidney Foundation of Maine website

In the United States:

Over 89,000 people are waiting for an organ transplant

Every day, 17 people die while waiting for the transplant of a vital organ

12,000 people eligible for donation die yearly, but only half become organ donors

From the National Kidney Foundation website

Cape resident Kevin Sweeney is hoping that someday he can thank the family who recognized the necessity of organ donation through the haze of their intense personal grief. Two weeks ago he was suddenly and unexpectedly offered a new kidney.

Sweeney was taken by surprise when he discovered that after only six months of dialysis there was a kidney that was nearly a perfect match to his own waiting for transplantation.

“This was not supposed to happen,” said Sweeney. He is making a speedy recovery and has already returned to his duties as a Cape Elizabeth School Board member.

Sweeney doesn’t know where his new kidney came from. He may never know. The identity of the donor and donor family is confidential, unless the family gives permission to release their names.

To pay it forward, Sweeney plans to approach the local chapter of the national kidney foundation about spokesmanship. “If I can go out and con people into donating kidneys, that would be cool,” he said. “It’s important. Somebody saved my life. I can’t just walk away from that.”

Sweeney said it is important that people discuss organ donation with their families. It is ultimately the deceased person’s family that decides whether or not to donate.

There is a Maine law enacted in January 2005 protecting the rights of organ donors.

People can sign up as legal donors with the Department of Motor Vehicles registry division as organ donors, right now. However, the database will not be up and running for upwards of a year, said Roxanne Taylor, a registered nurse and the transplant coordinator for the Maine Transplant Program. Family consent, said Taylor, is still the primary route to organ donation unless there is a living will stating a desire to be an organ donator.

Prior to surgery Sweeney drafted his own living will, stating that when he dies he wants his body used for research. Sweeney, before his surgery wasn’t planning to donate his organs, nor was his wife, Tina.

Tina, said Sweeney, is a traditional Italian New Yorker, who was previously squeamish about things like organ donation. Before experiencing dialysis and transplant surgery, Sweeney and his wife debated whether burial or cremation was right for them. Since the surgery, Tina is now a convert to organ donation.

“We were given a gift. I think I could do that” for somebody else,” she said.

Somebody else’s loss was Sweeney’s gain, and after only six months on dialysis, he received the call. “I hadn’t even reached the point where I was calling them asking them where I was on the list,” he said.

Sweeney was finishing up a day of dialysis at the Southern Maine Dialysis Center on Congress Street in Portland when he received the call.

The call

He was “ditty bopping” by the reception area when a nurse called out to him that he had a phone call. It was the transplant bank.

Sweeney assumed it was a call about insurance. A woman named Roxanne greeted Sweeney with a cheery high-pitched voice and asked how his day was going. “She was talking to me like she was my best buddy. I never heard of her before,” he said.

Then, she sprung it on him. “By the way, we have a kidney for you,” he paraphrased. Sweeney was in shock and denial. “I was sure she had to be yanking my chain,” he said.

It was Taylor, from The Maine Transplant Program, who delivered the good news. Taylor said Sweeney’s reaction was typical. The majority of patients respond with shock or disbelief. Many of them question Taylor, asking her if she’s joking. Her response is always the same. “I joke about a lot of things, but not that,” she said.

The Maine Transplant Program is a branch of Maine Medical Center under the United Network of Organ Sharing. They coordinate kidney and pancreas transplants for the state of Maine.

For Taylor, the most gratifying part of her job is picking up the phone and telling a waiting patient, the wait is over. “I get to tell them their turn has come,” she said.

Until patients are faced with the transplant surgery, the idea is hazy and unclear, said Sweeney. “It’s a very gray nebulous, almost meaningless kind of thing,” said Sweeney.

When Tina Sweeney discovered there was a kidney for her husband, she was incredulous.

“I couldn’t believe it was real,” said Tina Sweeney.

Dying on dialysis

Reality is setting in as Tina Sweeney watches her husband rebound quickly from surgery.

With the surgery comes the promise of a new life, an active life full of week-end excursions, dusky walks and possibly a second trip to Italy.

“We’re gonna have a great summer,” said Tina Sweeney.

This will be a dramatic change from the past six months. With Sweeney on dialysis three times a week at four hours a pop, Tina Sweeney said there was little room for time together. The dialysis drained not only the toxins from his body but his energy for enjoying life. Things like evening walks, and nights out to eat were scarce.

But, he said nobody really knew how sick he was. “Dialysis was the only thing keeping me alive,” he said.

After six months of dialysis, a procedure used to extract toxins and liquids from patients with kidney failure, Sweeney still has dark bulbous bruises above the bend on his left arm where IV’s sucked the toxic fluid from his body.

For 25 years Sweeney lived with the implications of diabetes. Diabetes coupled with hypertension stressed his kidney’s to failure for the first time in October 2004.

When he was told he’d have to go on dialysis, he said he felt suicidal. Death seemed imminent. “All I knew is that people on dialysis die,” said Sweeney.

Feeling like Frankenstein

Suddenly and unexpectedly, his Kidney recovered, dialysis was no longer necessary. “Everything was hunky dory,” he said. But in the middle of August 2005, the symptoms just as unexpectedly returned.

As Sweeney’s kidney slowly shut itself off from his body and toxins that should’ve been flushed out through his system deposited in his brain, he could no longer do simple math. Sweeney had been working as an independent financial consultant from home but found even simple accounting procedures difficult.

“I’d be mulling it over for 15 minutes, I just couldn’t do the work.” He said.

When they could no longer pull the toxins out through his arms, tubes were inserted into the jugular vein in his neck and funneled down into his chest running into the entrance of his heart. “I felt like Frankenstein,” he said.

Though that has since been removed, he is still living with hardware. After not using his bladder for the past six months, a catheter was necessary until the muscle strengthens.

“I still have a few appliances attached to me,” he said as he assured the details were too gory for consumption. Though he did theorize, “some feminist devised it to torture men.”

Though Sweeney said his moods swing drastically from weepy to angry because of the “wild cocktail of meds” he takes, it’s all a small sacrifice for the chance of a new life. He just hopes someday he can return the favor.

“It’s a little sobering to realize somebody died so you could live,” he said with a shaky voice as his vision blurred with tears. “It makes me cry.”

Sweeney said since he’s been home he’s “taking more meds than they have in most pharmacies.”Kevin Sweeney and his wife Tina in their home in Cape Elizabeth. The Sweeney’s are looking forward to life normalizing after Kevin Sweeney endured six months of dialysis and a kidney transplant.Kevin Sweeney at the Dialysis Center on Congress Street in Portland.

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