When Michael Roth decided months ago to organize a large-scale gathering of lung transplant recipients, he felt it would be a joyous occasion during which to celebrate their health as well as an effective way for them to discuss how their post-surgery lives have played out.
Nearly 300 such patients gathered for the Celebration of Life ceremony on Sept. 13 in the grand ballroom of Cleveland Clinic’s InterContinental Hotel & Conference Center.
Attendees shared ways in which their lives have changed since their surgeries – and how they’ve responded to and handled those changes – at the event, which Roth said he hoped would also serve to highlight the “wonderful” work of Cleveland Clinic’s Lung Transplant Program.
After all, if not for the program, Roth may not have been able to organize the gathering in the first place.
No treatment, no cure
In November 2007, at the age of 65, Roth was diagnosed with idiopathic pulmonary fibrosis, for which there is no known treatment or cure. Isolated to the lung, the disease makes breathing difficult. Lung tissue progressively becomes scarred, beginning at the edges of the organ before moving toward the center.
The life expectancy for someone diagnosed with IPF is three to five years, explained Roth, a resident of Bloomfield Hills, Mich., about 20 miles northwest of Detroit.
“We have a condo in Florida, and my wife was asking me to do things, and I realized I was awfully tired – and that’s not my modus operandi,” said Roth, who for decades was a runner and an avid outdoorsman when spending time at his family’s home in Aspen, Colo.
“Being that there’s no treatment or cure, you scour the country to find out what to do to live as long as you can,” he said. “I came across a gentleman who had a double transplant, and he was the impetus for me to start my quest for a lung transplant.”
Once diagnosed, Roth visited National Jewish Health in Denver, one of the top respiratory facilities in the country. He was told there was nothing the hospital could do for him.
Roth subsequently visited the University of Michigan’s medical center, where doctors told him that due to his advanced age, they were reluctant to perform a transplant.
He then went to Henry Ford Hospital in Detroit, which would’ve accepted Roth as a candidate but didn’t perform many lung transplants.
“There’s an inherent risk with this surgery, and you’d really rather go someplace that does more of them and has a better track record,” Roth said. “At the University of Michigan, the gentleman I was seeing, who was monitoring how fast (my health) was declining, said I should try to get to Cleveland Clinic. At the same time, a guy at the other hospital asked, ‘Why aren’t you going to Cleveland Clinic?’”
Ticket to Cleveland
So, more than three years after his diagnosis – past the very beginning of his life expectancy window – Roth scheduled an appointment at Cleveland Clinic.
Dr. Marie Budev, medical director of the Lung and Heart-Lung Transplant Program, estimated that 30% to 40% of the lung-transplant cases Cleveland Clinic receives are referrals similar to Roth’s.
“When you look at the Cleveland Clinic, in all areas really, we have a reputation for taking those cases that are either puzzling or couldn’t be resolved in another institution or were turned down,” she said. “We have extensive experience in doing high-risk, complicated surgeries, and we have the surgical and medical expertise.”
Doctors accepted Roth as a transplant candidate, but as time passed, his condition deteriorated – to the point he was “on oxygen 24/7 and going downhill reasonably fast,” he said.
Then, one evening Roth and his wife went to a dinner with several friends that proved especially challenging.
“The comment I made that night was ‘I think this is the last time, I don’t think I can do this anymore.’ I was getting very weak,” he said. “And the next day, I got a call at about 5 in the morning saying, ‘We think we have a lung for you.’”
Roth’s “false sense of not being as sick” took over in his initial response to the call, he said.
“It was Dr. (Thomas) Olbrych who called, and he asked, ‘Do you think you’re ready for a transplant?’” he said. “My answer to him was, ‘Other people are sicker than I am, maybe they should get it first.’”
Budev joked that Roth’s response isn’t typical of patients in his situation, but said she understood his response to be representative of his character.
“It didn’t surprise me to have him say that,” she said. “This is a patient who has always given, and his view on life is ‘someone else is worse off than I am.’”
Soon after that phone call, on Dec. 19, 2010, Roth was back in Cleveland and successfully underwent surgery.
Now 69, Roth continues to spend time with his three children and five grandchildren and to oversee the commercial real-estate development company he’s owned with his childhood friend and business partner of 44 years. He credits the Cleveland Clinic with helping him get here.
“Aside from just saving my life, I think it’s a wonderful institution, and the doctors are very dedicated, very compassionate, and they deserve every accolade that’s coming their way,” he said. “After I had the surgery, one of the things you hear people talking about, myself included, is that you want to give something back.”
From there sprung the idea to hold the Celebration of Life ceremony.
“One of the things that came to mind was to bring other lung transplant patients together so we can meet, see what’s going on with each other and give ourselves the encouragement to know we can live productive lives,” he said. “We celebrate how lucky we are, and maybe we help each other so we can live longer, and maybe we come up with ideas that help other people with our disease.”
Roth also hopes the ceremony will help stress the importance of organ donation.
“Organ donation is the way to go. It’s not a sin, and it’s not a desecration of your body under Jewish religion,” said Roth, a member of Temple Israel in West Bloomfield, Mich. “It will save multiple lives.”
The event will also serve as an opportunity to help current and future patients in need cover the cost of transplant-related medications, lodging and other expenses. All told, a lung transplant – including the procedure – can add up to hundreds of thousands of dollars.
“He’s hoping that other patients who have the urge to help others will consider donating to a fund we have, Breath of Life,” said Budev, adding that Roth’s selflessness in proposing and putting together the ceremony was exemplary.
“When he brought this up to me, I was so moved that he again was not thinking about himself but thinking about how he can help other people,” she said. “His role in all of this was instrumental. He was the central focus and inspiration for this event. No other event like this has been held in this country for lung-transplant patients, and every one of those patients is going to feel as good as Michael does currently because they’re going to be surrounded by love, surrounded by celebration, and they’re going to see each other’s successes.”