It wasn’t supposed to happen this way. Ed Suslovic was supposed to donate one of his kidneys to his friend John Thompson, and both would live happy, healthy lives through their 60s and beyond.
But fate had other ideas.
“I feel like Lou Gehrig – I’m the luckiest man alive,” said Suslovic, 61, a former Portland mayor, city councilor and state representative.
To appreciate the man’s irrepressible optimism, you should know that he was talking about his recent cancer diagnosis.
“I feel horrible because of what he’s going to go through,” said Thompson, 64, of Westbrook. “On the other hand, I’m sort of happy, because if he hadn’t found out as early as he had, he could have been a lot worse.”
Ed Suslovic Gregory Rec/Staff Photographer
It all started last fall when Suslovic, who has served with Thompson on the Greater Portland Metro board of directors for the past decade, heard that Thompson wasn’t doing well.
Thompson’s current kidney came from his sister 26 years ago – her name is Bonnie Wetmore, she lives in Casco, and she’s still doing just fine at age 70. But as all donated kidneys eventually do, this one finally failed in 2018.
Since then, Thompson has undergone dialysis three times a week. The treatments, which last at least 4 1/2 hours, leave him fatigued and unable to work full time at his insurance job. And given the strain that dialysis puts on the rest of his system, he knows he’s on borrowed time.
Suslovic already knew a thing or two about using his own healthy body to help others less fortunate. He began donating blood and platelets way back in 1982.
At the same time, Suslovic also enrolled in the National Marrow Donor Program. In 1998 his donated bone marrow saved the life of Chris Costello, a 10-year-old kid from upstate New York with leukemia. The two, along with their families, remain friends to this day.
Last October, noticing Thompson’s absence from a few Metro board meetings, Suslovic learned that his friend’s health was declining and that he needed a new kidney.
“In all honesty, I hadn’t really thought about donating a kidney – that was a bridge too far,” Suslovic said.
But then he saw a news story about Sheldon Tepler of Topsham, who had just donated a kidney to an ailing neighbor. Days later, there Suslovic sat with Thompson outside the Dairy Queen in Westbrook, making Thompson an offer he couldn’t believe.
“I was floored,” Thompson recalled.
For more than two years, Thompson had tried without success to find a donor – upwards of 20 friends and relatives volunteered but were disqualified for one reason or another – and here was this fellow board member offering his kidney?
Thompson, flabbergasted, offered to pay for Suslovic’s ice cream cone. Suslovic laughingly refused on the grounds that “I’m going to have to sign a form that says I received no inducements to do this.”
With that, they sealed the deal and contacted the Maine Transplant Program at Maine Medical Center. As luck would have it, their blood types matched – a first crucial step in linking a recipient to a donor. Suslovic, fit and healthy, also scored high on the functioning of his two kidneys.
But then, amid more blood testing, a red flag went up. Suslovic’s platelet count was low – he’d heard the same thing back in 2014 from the American Red Cross, which told him to cool it on his platelet donations and stick to just whole blood going forward.
This time, the platelet concerns led to a visit with Suslovic’s primary care physician, which led to an appointment with a hematologist, which led to a bone-marrow biopsy on Jan. 6.
“Does that date ring a bell?” Suslovic asked.
Indeed. On the same afternoon the U.S. Capitol was under siege by an insurrectionist mob, an oblivious Suslovic was facedown on an operating table having a needle thrust deep into his pelvis.
One week later, Suslovic sat down with the hematologist. The bad news was that Suslovic had cancer. The not-so-bad news was that it was hairy cell leukemia, a blood disorder that, with the proper treatment, goes into full remission 85 percent of the time, according to the Leukemia and Lymphoma Society.
Suslovic will undergo chemotherapy early next month. And, like anyone with a cancer diagnosis, his donating days are over.
But he’s not giving up on Thompson. If he can’t donate a kidney, he figures, there must be someone out there who can.
“The real crime here is that John is left high and dry without the kidney I had promised him,” Suslovic said. “Thus, my mission in life is to find a replacement kidney donor for John – and all of the other wonderful people waiting in line for kidneys – before it is too late for them.”
That’s music to the ears of Dr. Juan Palma, director of donations for the Maine Transplant Program. Upwards of nine out of 10 living kidney donors – Maine has averaged 27 annually in recent years – are either a friend or family member of the patient in need, he said. Those who do it to save someone they don’t even know are, to put it mildly, in a class by themselves.
“These people are true heroes,” Palma said, speaking of all living donors. “I’m lucky and privileged to see them on an everyday basis.”
The surgery to extract a donated kidney has evolved over the years to where it can be done laparoscopically, Palma said, with hospital stays typically lasting only two days. As for those who worry about living a full life with one kidney, look no further than Thompson’s older sister.
And if a live donor doesn’t match a particular recipient? Not a problem – your kidney will be implanted in someone elsewhere who is matched with you by way of the National Kidney Registry. In turn, the person you designate then will receive another kidney from a matching live donor as soon as one becomes available.
Nationally, just under 100,000 people are on the kidney transplant waiting list, according to the U.S. Department of Health and Human Services. In Maine, Palma said, the waiting list has grown from fewer than 100 five years ago to 150 today.
That’s a lot of lives. And Maine, according to Palma, is a place where living donors already have a remarkable record of stepping forward: While only 20 to 30 percent of transplanted kidneys nationally come from live donors, the number here is around 55 percent.
“I think this is a special area of the country,” Palma said. “People in Maine, the communities, I think are more interconnected. The number of people with the courage to raise their hand is significant.”
No, it’s not for everyone. In fact, before anyone donates a kidney through the Maine Transplant Program, they must clear an independent evaluation to ensure they’re doing it for all the right reasons.
But if you’re healthy and inclined to save a life, the ever-upbeat Ed Suslovic hopes and prays that you’ll consider taking his place.
So does John Thompson.
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