[T]alk about a bombshell.
Sister Janice Ryan was wrapping up her closing remarks at the inaugural Con Hogan Leadership Award ceremony in Montpelier when she paused ever so briefly, crossed her arms and quickly wiped her lips with her thumb and finger.
For the past hour, the audience of 150 had celebrated community leader Ellen Kahler as the first recipient of the Con Hogan Award, named after the Vermont public servant who served a decade as secretary of the Agency of Human Services and today is a member of the Green Mountain Care Board, which regulates health care costs.
Many at the Vermont College of Fine Arts ceremony a few weeks ago were preparing to leave when Ryan, a Sister of Mercy, former Trinity College president and close friend of Hogan’s, said she wanted to share a secret — that she’d wanted to test everybody on the way in to see if they could qualify to be an organ donor for someone she knew in need.
“Most people in this room know and if you didn’t know, you’re going to know right now, that Con Hogan needs — and I’m not kidding — needs a new kidney,” Ryan told the audience.
For some, it was the first time they’d heard the news. For others who knew, they were shocked by Ryan’s public declaration, including Hogan, who was stunned.
Sister Ryan continued: “Our gift to you, Con, will be each person in this room, whether you call it karma, a good thought, prayer or something else that I didn’t think of, will be sent on to Con: Find the God blessed kidney, please Lord and do it. We want it now,” she said, as the crowd clapped in the background.
Then she thanked the folks who provided the hor d’oeuvres.
VTDigger PODCAST:
Mark Johnson interviews Con Hogan.
Going with it
On Monday, half-sitting, half-reposing on a couch in the modest Plainfield home he built himself, the dialysis machine whirring in the background, his rich, red blood flowing in and out of the tubes tied to the NxStage dialysis unit, Cornelius “Con” Hogan recalled the Ryan bombshell with a big smile and a hearty laugh.
“She blurts out to wrap the meeting up, she says ‘Con needs a kidney.’ Well, I gotta tell you, it was a shock.”
But, Hogan said, he decided to run with it.
“At that point it was public, so I think it changed my … I hadn’t even thought about it, but at that point it was public, and I said what the hell, I mean what the heck, maybe we can put something together here, maybe there’s something I can do to help myself” and try to find a live donor, he said.
“She’s something else. She is amazing,” Hogan said of Sister Ryan, chuckling, shaking his head.
Many say the same about the 74-year-old Hogan, who was AHS secretary from 1991 to 1999, a successful businessman and an author, who joined the Green Mountain Care Board as a founding member in 2011. Among many foundations, he was a senior consultant to the Annie E. Casey Foundation, which helps disadvantage children. He started his career as a corrections officer in New Jersey before moving to Vermont. He and his wife are also accomplished bluegrass musicians.
“He’s a lesson in fortitude, strength and courage and he just keeps going. I just kind of watch him in amazement,” said Al Gobeille, the chair of the GMCB, the state’s health care regulatory body. “He’s never behind.”
Dr. Deb Richter, a friend, said: “The man has nine lives. He’s incredible. He has a lot of mind-over-matter mentality. Anybody else, they’d be on disability and he’s still working. He still functions in spite of it all. It’s pretty amazing, but he needs a new kidney. There’s no two ways about it.”
Hogan said his kidney function is at only 7 percent to 10 percent of normal, which is considered severe.
Hogan was diagnosed as a diabetic in 1984 and has had 10 medical procedures over the years, including stents in his heart and leg, some of which he said had to be done if he were to ever get a transplant, whether through the more standard method, receiving an organ from a deceased person, or from someone alive donating one of their two functioning kidneys.
Tough odds
Two years ago, Hogan went on the organ donor waiting list for the Dartmouth-Hitchcock Medical Center area and is joining another list in Maryland. But he says because of his age and condition, getting a kidney donation from a deceased donor “is getting ever more remote.” The University of Vermont Medical Center, he said, has an age cutoff of 72, two years past his eligibility.
Nationwide, more than 100,000 people are on waiting lists for a kidney.
“It’s hard to handicap,” he said of his chances for a transplant from a deceased donor, but Hogan said an additional challenge is that the rules were changed last year and now call for trying to match the donor and the recipient’s ages, a change Hogan said will shrink the donor pool for him and means “the whole process has slowed down a bit.”
So he’s turning to friends and the public.
“Dialysis is a wonderful thing that gives you much flexibility and the ability to keep going, but it can’t last forever,” Hogan said, adding later, “It’s not going to fail overnight, but you can’t use it forever.”
Hogan has been on dialysis for a little over two years, first at the hospital. Now he does the blood-cleaning at home, with a unit the size of a small refrigerator, with the help of Jeannette, his wife of 51 years.
Cheerful, down-to-earth, Jeannette does the half-hour set-up and the shutdown and monitors the machines during the entire three-hour process, which they do five days a week. A physical therapist, Jeannette had to be trained for a month on how to use the unit, which has a book to decipher error codes, has frequent hiccups and which, after preparing the necessary solutions, Jeannette starts by pushing a small green button on the front panel that’s shaped like a kidney. He says she was nervous at first.
Hogan raves about the progress in the technology that allows him the freedom to do dialysis at home, to enjoy the beautiful views at their East Hill Farm – including the horse-training facility next door he and Jeannette have run for almost 40 years – and to do the dialysis on his schedule, not the hospital’s.
The machine draws blood out of a catheter in Hogan’s chest and then runs it through the machine a few feet away, which cleans the blood as it goes through an almost foot-long, sponge-like filter, returning the fresh blood back into his chest in a second tube.
Too much to do
Hogan says he has no real physical discomfort. He says he doesn’t think about dying. He worries he and Jeannette won’t find a donor, but he said his biggest anxiety is the idea of being ball-and-chained to the dialysis machine forever. He just wants to get the procedure over. He says he has too much work to do.
He’s upbeat about his chances of finding a live donor willing to give up a kidney, an idea he admitted was “initially awkward” to even pursue. Hogan and Jeannette have two children who he said were not medically suitable for a match. (His and Jeannette’s 49-year-old daughter was on the short list to make the Olympics in dressage and is a world-class horse trainer. Their 46-year-old son, trained as an architect, lives next door.)
Gobeille, the GMCB chair, said some people find Hogan intimidating, but he said Hogan was a gentle bear who had gracefully mentored him when he took over the board. Gobeille cited Hogan’s breadth of experience and his depth of knowledge as being key to the board. A generation younger, Gobeille said Hogan help guide him and encouraged him as Gobeille went from restaurant owner to chair of the powerful health care board.
“He’s a big guy and a tough guy and he’s got that reputation, but the staff just love the guy. They love to work with him. He just has something about him that’s been a real asset to the state of Vermont,” he said. “It’s that intangible thing, that leadership gene. He’s a leader, not a manager. He’s the one that says let’s go over here and once you get over here, you realize it was the right answer and no one else saw it.”
Hogan hopes he’s found the right answer seeking help from the public.
Cheryl Mitchell, a friend and former Human Services deputy secretary, agreed to serve as the independent person that people could contact if they want to donate a kidney or are seeking more information. She said 22 people have expressed interest (email her at cheryl.w.mitchell@gmail.com). She steers them to Dartmouth-Hitchcock, which would do a series of blood, tissue and other tests to see if there’s a match. Mitchell says there are also now Internet sites that charge a fee to help people find a match.
One of the reasons to have a third party that potential donors can go to, Hogan said, is if they want to remain anonymous. Or just have questions. Hogan said if someone volunteers, there is a rigorous process where they make sure it makes medical and practical sense for them to be a donor.
Hogan said if he’s successful getting a transplant, he’d like to know who the donor is, but he says there should be a waiting time before that disclosure is made to be sure the new kidney is working.
Then, he said, he’d like to have “a deep cup of coffee with them.”
“And to thank them.”
