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A stroke of fortune for both kidney transplant recipient and donor

Brian Conn started last year struggling with the suicide of his father, trying to soothe the pain through long hours on the job, followed by too much time away from home with friends.

Scott Dodson pushed through the year afraid for his life. His kidneys were failing, prospects for dialysis neared and a transplant was the only thing that could save him in the long run.

“We staved it off as long as we could,” said Dodson, who had been diagnosed with kidney disease a dozen years earlier.

Fear, desperation – and golf – connected the two men and changed everything for them as this year dawned.

Conn gave Dodson the gift of a new life on Jan. 9, when surgeons at Strong Memorial Hospital in Rochester removed his left kidney and implanted it into Dodson in an operating suite next door.

The two men – both golf course superintendents who work five miles apart in the Buffalo suburbs –  professed to some lingering soreness last week as they recounted a gift that each of them believes they have received, in the hope it will inspire others.

Gratitude mixed with the urgency that nearly 8,000 New York State residents started this year waiting for a donated kidney – and that many more donors are needed to address the need.

“Whatever hardships come with kidney donation are so far outweighed by the positives,” Conn said.

NEARLY STRANGERS

Conn, 48, an Erie, Pa. native, came to the Buffalo region in 1996 to take a job as superintendent of Terry Hills Golf Course in Batavia. He served in that role through 2008, worked a few years at Craig Burn Golf Club in East Aurora, and became superintendent four years ago at Transit Valley Country Club in East Amherst.

Dodson, 60, a dual U.S.-Canadian citizen, grew up north of Toronto. His father, a golf course superintendent for half a century, raised three sons who all went into the profession, as well. Scott, the youngest, just started his 26th year in the role at Park Country Club in Amherst.

Conn and Dodson are among more than 100 public and private golf course leaders who belong to the Western New York chapter of the Golf Course Superintendent Association of America. Both have been president of the chapter three times.

Despite their mutual interests and workplace proximity, the two described themselves as “almost strangers” before current Terry Hills Golf Course Superintendent Thad Thompson, then president of the chapter sent out an urgent email last spring to members of the association. It read, in part:

“Scott Dodson, our friend and fellow superintendent ... needs our help and support. Scott has been privately dealing with kidney disease for some time. The disease has progressed to the point where Scott is in need of a kidney transplant. ... Scott has been on the kidney donor list at Strong Memorial Hospital in Rochester, NY for over a year. The best option at this point would be to find a ‘live donor,’ meaning an individual who is a match could donate a kidney to Scott.”

“I saw the email and I was all in,” Conn said.

Living donors, families of those who die unexpectedly, are key to organ transplantation

The decision followed a troubling two years. The death of his father, Ron, in November 2015, rocked the family. Conn sought solace in long work days, going out with friends and time alone in the family room in his basement. His despair strained his marriage.

The funk spilled into last year and eased after his wife, Jennifer, and their children, Victoria, 20, and Noah, 18, encouraged Conn, a lifelong Catholic, to attend a service at Eastern Hills Wesleyan Church in Clarence.

“At the beginning, there was all this singing, and people raising their hands, and I thought, ‘This isn’t for me.’ I would stand there listening, and then Pastor Pat Jones would come on. His message hit me within five minutes. I said, ‘This is what I’ve been looking for, for the last 20 years. This is what I want my mind and my heart to be filled with. It was basically a belief that was always there and strong, but never practiced well, and this just woke it up and ramped it up again.”

The email followed within a few months of this reawakening.

“There was such an overwhelming need to help,” Conn said.

Dodson, too, had weathered a harrowing process leading up to the email. The combination of Type 2 diabetes and kidney failure made him struggle to stay awake on the job. Both kidneys were failing. Both kidneys had only 10 percent function when his nephrologist told him he’d soon need to start dialysis – and get on a transplant list.

PREP AND SURGERY

Drs. Mark Orloff, left, and Randeep Kashyap, led transplant surgery on Jan. 9 in which Brian Conn donated his left kidney to Scott Dodson, whose kidneys were functioning at only 10 percent. (Photo courtesy of the University at Rochester)

Conn chewed tobacco in his younger days before he was told during a routine dental visit in 2000 that he had precancerous growths inside his mouth.

“I changed addictions and have exercised every day for the last 12, 13 years,” he said.

Conn became a fixture running the sidewalks and trails near his East Amherst home until knee strain convinced him a few years ago that he needed to do more strength and resistance training to quell his fitness appetite.

The transplant process started with a blood test that confirmed Conn had an O-negative blood type, and was a universal donor. He was in great shape physically going into the pre-surgery process, yet still had to undergo a series of cardiac, pulmonary and psychological testing to assure he was a suitable candidate.

Dodson had to do so, as well.

Conn was wheeled into surgery a couple hours before Dodson.

“I had no worries in the world, no trepidation, no second thoughts,” he said.

Dr. Randeep Kashyap and his surgical team cut several small incisions into his abdomen and used a laparoscope to help remove his left kidney.

Dodson had open surgery that left a long scar below his abdomen. Dr. Mark Orloff and his surgical team positioned Conn’s kidney below Dodson’s failed right one, leaving behind the barely working kidney – the standard practice because it does no harm and results in fewer complications. For the first time in years, he slept through the night without having to wake several times to clear his bladder.

“I couldn’t believe it,” he said. By the next afternoon, he was feeling great – much better than Conn, in fact, who had never before experienced surgery.

“I don’t think he was too happy because we were trying to walk and I was lapping him in the walker, and had a big ... grin on my face,” Dodson said.

“The night after surgery at 9 o’clock, regret came into my head,” Conn admitted. “I said, ‘God, I know it’s going to be different tomorrow but I can’t believe you made me do this.’”

There’s no getting around the pain that comes from laparoscopic surgery in the abdomen. “That’s a very large muscle mass you have to go through,” Orloff said. Still, he said, healthy donors needed up to three months to get back to work before the microscopic surgery became common for kidney donors two decades ago.

PROSPECTS

A kidney transplant changed the perspective of both Scott Dodson, left, golf course superintendent at Park Country Club, and Brian Conn, golf course superintendent at Transit Valley Country Club. "I’ve learned to appreciate family more over time, and now it’s hard to overlook the kindness of ‘almost strangers,’” Dodson said. (Robert Kirkham/Buffalo News)

Things improved quickly for Conn. He spent two days in the hospital, a week off work and two weeks working part time. He feels much better now, and – as is the case with almost all donors – expects to recover fully. He often put his right hand on his abdomen, however, as he and his kidney recipient recounted their tale last week.

Dodson spent 4½ days in the hospital and went back to work in about the same way, with some hitches. He has spent the weeks since surgery taking a new battery of medications, including a steroid, prednisone, and anti-rejection drug, Tacrolimus, both of which he expects to take in lower doses, as he continues to recover, for the rest of his life.

His diabetes has shifted to Type 1 and he now has to take insulin injections, something that may change over time. He also has struggled with a gastrointestinal condition that has re-hospitalized him three times and stripped more than 60 pounds from his still imposing 6-foot-2 frame.

Still, after a double knee replacement two years ago, and now a new kidney, he longs for a brighter future with his wife of two years, Brenda, his children, Jason, 31, and Rachel, 28, and his 15-month-old grandson, Benjamin.

“I’ve got a bunch of new parts,” he said with a smile.

Both Conn and Dodson, avid golfers, long to get back on their games. They have been encouraged to watch the weight they lift, take it easier in the coming weeks, and gradually rebuild their strength.

“Four weeks ago, I could hardly go up a set of stairs,” Dodson said. “If I tried to swing a golf club right now, I’d fall over. I won’t be able to hit a drive for another few weeks but I have started seeing my personal trainer again.”

He also is untethered from the rigors of dialysis, which patients can undergo up to four hours for three or more days a week.

“You’re chained to a machine,” Orloff said. “You feel lousy coming off dialysis. You feel lousy going on to dialysis. Still, you may get to a sense of well-being … between dialysis appointments.”

GRATITUDE

Both donor and recipient feel blessed.

Dodson knows he is fortunate. According to the U.S. Organ Procurement and Transplantation Network, 229 deceased donors and 164 living donors have given kidneys for transplants in New York State so far this year; 616 transplants have taken place. (Two kidneys generally are donated by deceased donors).

There are 9,763 residents on the state list in need organ donation; 7,865 of them need a kidney.

“This process certainly has changed my outlook,” Dodson said. “Sometimes, this job can absorb you to the point where you’re just worrying about it and everyone else is over there somewhere. It’s a rebalancing in attitudes. I’ve learned to appreciate family more over time, and now it’s hard to overlook the kindness of ‘almost strangers.’”

Conn feels fortunate, too.

“I’ve been given the chance to give someone else another chance. How can I ignore all that?”

He has recommitted to his marriage in more meaningful ways, and he and his wife have made two new friends in Scott and Brenda Dodson.

The couples have been to a Sabres-Leaf game – which the Canadian natives enjoyed more – and plan dinner soon, now that Scott Dodson is feeling better.

Both men are grateful to their families, friends and staffs for sacrifices made during the recovery period, and for country club members who provided encouragement, prayers, cards and flowers. Transit Valley hosted a 5K on St. Patrick’s Day and raised more than $1,800 for the Strong Memorial transplant program.

As Dodson sought a donor, the Strong Memorial staff encouraged him to get outside of the family to talk about his need for a kidney.

The email was key – but isn’t the only option.

“How can you not notice a billboard on (Interstate) 290?,” Dodson said.

Conn said he saw someone wearing a T-shirt reading “I’m somebody’s B+” at a Penn State football game after he made his donor decision, giving him a sense of reaffirmation.

“It’s not just living donors,” Dodson added. “It’s deceased donors. Maybe some people feel weird about it for some reason. Your soul may go somewhere but your body’s not going anywhere. You can help people with it.”

Both men encouraged others to become donors – and make sure family knows your wishes.

“So many transplants don’t get done because the family doesn’t know,” Conn said. This is what you can do “at the minimum.”

“People should really look into it,” Conn said. “I think some people think it’s way bigger than it really is. The simplicity after the fact is the amazing thing. The doctors make it easy and the people around you – who you always knew were there but maybe never had a chance to become part of something bigger – support you. Everybody wants to become part of something bigger if given the chance.”

TRANSPLANTATION STATISTICS

– The median wait time for an individual’s first kidney transplant is 3.6 years and can vary depending on health, compatibility and availability of organs.

– More than 3,000 new patients are added to the U.S. kidney waiting list each month.

– 13 people die each day while waiting for a life-saving kidney transplant.

BECOME A DONOR

Those in WNY can reach out to Erie County Medical Center at 898-5001 or 888-894-9444.

Acceptable organ donors can range in age from newborns to 65 years or more. Living donors in New York State must be at least 16.

Donor organs are matched to waiting recipients by a computer registry called the National Organ Procurement and Transplantation.

IDENTIFY YOURSELF AS AN ORGAN DONOR

Visit the Donate Life America website at donatelife.net.

New York State residents can do so at donatelife.ny.gov/register.

Declare your intentions on your driver's license.

Sign a donor card.

Signing a donor card, registry or driver's license is a good first step in designating your wishes about donation, but letting your family or other loved one's know about your decision is vitally important. That's because family members are often asked to give consent for a loved one's donation, so it's important that they know your wishes.

Source: National Kidney Foundation

email: refresh@buffnews.com

Twitter: @BNrefresh, @ScottBScanlon

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