Mayor Jimmy Johnson returned home in the pouring rain Friday night just 12 days after undergoing lung transplant surgery.
"There's no place like home," Johnson said Tuesday. Then, quoting a Kingston Trio song, itself a paraphrase of Robert Louis Stevenson, he added: "Home is the hunter, home from the hill ... It's wonderful."
Friends and neighbors have rallied around him, preparing meals, making sure he takes his medicine and offering to do anything they can for him.
The outside world has called, too, asking the mayor to help push a bill before Congress that would increase funding for research into pulmonary fibrosis, Johnson's disease.
"Seminole is what I call a barn- burning community," Johnson said. "You remember, years ago, if a farmer lost a crop or his crop got lost with fire, all his neighbors would gather 'round him (and plant a new crop or help him harvest the crop that survived). That is what we are, a barn-burning community."
Johnson said his biggest problem is soreness from the surgery. The surgeons had to cut through one rib so his left lung could be removed and the healthy lung put into place. He also has limited endurance.
"If I could just get over the soreness," Johnson said. "It will eventually get there. I guess it requires a lot of patience. ... I get fatigued pretty easy. I take a short nap. Then I'm okay."
Johnson said he's unable to drive a car or lift more than 10 pounds and has to return to Tampa General Hospital every Monday for the next few months for therapy and checkups. Between times, he has to do daily breathing exercises and take medication.
"I'm a survivor. I know what I have to do to keep on keeping on," he said.
Johnson said he plans to return to work in three weeks if all goes well. The city has already delivered mail, a list of upcoming proclamations and other items scheduled to come before the council. And city officials are making plans to connect Johnson to meetings by Webcast. If necessary, he said, a notary will stay home with him during the meetings to attest to the fact that it was Johnson who cast a vote.
"That way, you can never be challenged," the mayor said.
A fighter by necessity
His plans don't stop at the doors to Seminole City Hall and the Chamber of Commerce, where he is executive director. He has been receiving cards and letters from across the world. Many of them refer to cystic fibrosis, an inherited disease that causes mucus to clog the lungs, or to the disease Johnson has, pulmonary fibrosis, a progressive scarring of the lungs. There is no cure for either disease.
Many people have never heard of pulmonary fibrosis. Johnson was one of those people until he was diagnosed with it in December.
Raising awareness is one of the goals of the California-based Coalition for Pulmonary Fibrosis, which contacted Johnson after reading a news article about him.
"He really is an inspiration. He's also a minority. There are very, very few of (our patients who) survive," said Teresa Geiger, the coalition's vice president of outreach and patient advocacy. Geiger's father died of the disease.
"This is a diagnosis that is worse than lung cancer," Geiger said. "It's a tough disease. It's a tough diagnosis."
Geiger has asked Johnson to help her advocate a bill that's being sponsored in Congress by U.S. Rep. Brian Baird, D-Wash. Baird had a relative with the disease.
The bill, if passed, would do four things: create a pulmonary fibrosis registry; set up a national pulmonary fibrosis advisory board to make recommendations to the Department of Health and Human Services; expand research of the disease at the National Institutes of Health; and require the Centers for Disease Control to prepare a national action plan.
"I told them that if they needed my help I would be more than happy to look into it," Johnson said. "The money for all these foundations and stuff comes from the government."
But Johnson said that's not his primary interest.
"The biggest thing that I would like to see accomplished is to see this (transplant) program really take off," Johnson said. "Let the people leave their organs behind."
Geiger agreed that more organ donors are needed.
"Without a transplant, there's no way to survive this," she said, estimating that 2,200 people across the United States are waiting for lungs and about 400 of them have pulmonary fibrosis.
"A lot of them will die on the waiting list," she said.
Tampa General success
Locally, the story is a bit better. Tampa General started its transplant program seven years ago, performed its first transplant five years ago, and really got the program into gear three years ago when it got Medicare certification, said Dr. Mark Rolfe, the pulmonologist on the hospital's lung transplant team. Rolfe is Johnson's doctor.
Three years ago, Tampa General had the country's 37th busiest lung transplant team. The team is now the eighth busiest. Last year, the team performed 41 lung transplants. On Monday afternoon, 11 people were on the waiting list for a lung.
The number of people waiting to be put on the transplant list is between 20 and 30.
Those patients must go through an extensive workup to make sure they are good candidates to receive lungs. A good candidate has generally good health except for the lung issues. A team evaluates the candidate's medical and mental health. If the team okays the patient, he is put on the waiting list.
The more ill a patient is, the higher he will be on the list. That way, Rolfe said, the sickest people are taken care of first. Then comes the wait for a match. A match means blood type and size are compatible with the recipient's.
"You can't squeeze a 6-foot-2-inch lung into a 5-foot-2-inch patient," Rolfe said.
When a donor is found, part of the transplant team goes to examine the lung, remove it from the donor and bring it back for the patient here.
The team, Rolfe said, has flown as far away as Puerto Rico to pick up a lung. In that case, he said, the team members had to outrun a hurricane that was bearing down on the island.
"They flew in on a bleak day and turned around and got out before the hurricane came in," Rolfe said. "Timing. It's all timing."
Some patients have double-lung transplants, and some, like Johnson, get only one lung.
"We like doing single lungs for the older, high-risk patient," Rolfe said.
The surgery for a single lung transplant is less invasive and the recovery time is faster, he said. If necessary, the other lung can be replaced later.