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Tom Smith was about as sick as a man could get.
Just the phrasing of his diagnosis – end-stage liver disease – indicates just how dire his condition was. Doctors painted a grim picture and were preparing Smith and his family for the worst.
It was a waiting game. Tom Smith was dying.
That was last fall. Fast-forward to a recent summer day as Smith relaxed on the sofa at his Blue Hill home, his beloved Persian cat Dude sprawled contentedly at his feet.
“I’m feeling great,” he said.
What happened in between was a tale of frustration and disappointment, research and rejection; almost daily visits to the emergency room, a move to Florida, medical bills and more medical bills and a family and a community that didn’t give up until Smith had the liver transplant he needed to stay alive.
They still haven’t given up. Friends and family have organized a local “Gifts of Life” benefit auction in Blue Hill on July 23 in conjunction with the National Foundation for Transplants.
Organizers hope to raise $100,000 to benefit the foundation’s Celebrate Life Fund, which was set up to help transplant donors and recipients in emergency situations and will help to settle some of the Smith family’s debts, which topped $200,000. The event also will publicize the need for donated organs in New England, the region with the lowest availability of donated organs in the country.
In the fall of 2003, Smith was watching the seventh game of the American League Championship Series. With a rueful smile, the avid Red Sox fan explains that that is how he dates the onset of his illness, or at least, his awareness of it.
Boone had hit an 11th-inning home run to once again destroy the Sox’s hopes for a World Series championship. The next day, Smith felt terrible. He was tired. And he knows now it was more than just his disappointment over the Sox’s loss.
As the disease progressed, Smith became lethargic. He began to bulk up, mainly because of ascites, a buildup of fluids in his body, particularly around his lungs, which made breathing difficult.
He fell down a lot as the disease destroyed his muscle tone. He developed an infection in his lungs, making breathing more difficult. Eventually, he had to rely on oxygen and couldn’t sleep without it. Soon, he was bedridden.
Although Smith said the care he received from local hospitals was good, no one ever mentioned the option of a liver transplant during his months of treatment.
“Patients need to ask questions to their physicians,” he said. “You need to ask about transplants and transplant organizations that might help you.”
Potential organ donors also need to ask questions. There is a lot of uncertainty about how organ donation works, Smith said.
“There’s a huge lack of understanding about what is necessary for people to do,” he said.
It was Smith’s wife, Marilyn, who wouldn’t accept what seemed a hopeless situation.
“We weren’t getting a whole lot of direction. They said his liver was in pretty bad shape and that it was not in a state where it was likely to repair itself,” Marilyn Smith said. “That was unacceptable. I’d heard of the Lahey Clinic [near Boston]. I called them in tears and they jumped right on it. Within three weeks, they said he needed a transplant.”
Tom Smith says his wife’s call saved his life.
“Marilyn is a go-getter. She doesn’t let up,” he said. “If she hadn’t done something, I probably, no, I know I wouldn’t be here talking with you right now.”
But needing a liver transplant and becoming listed as a potential recipient are two different matters. Smith faced a battery of procedures at the clinic including blood tests, a physical exam and a psychological evaluation, the results of which establish a “meld score,” which Smith said “tells you how sick you are.”
Even when Smith’s score qualified him as a potential transplant recipient, he said, the clinic ruled out a transplant because his insurance would not cover the cost of the operation.
“The Lahey Clinic really helped us out; they gave us hope,” Marilyn Smith said. “But that was our next catastrophic event.”
At the time, Tom Smith wasn’t working and the couple had brought in a new partner into their business. Tom’s illness had depleted their savings and retirement accounts. Their insurance would cover only about $20,000 of the expense, even though they had had the policy for 17 years. They had no reserve to draw on.
“We’d already sold everything we could,” she said.
That was when the community came forward. Tom’s mother mortgaged her home; Marilyn’s mother, Ginger Dewing, helped to organize a local fund-raising effort in affiliation with the National Foundation of Transplants, and also is helping to organize the coming auction.
“Our families pulled together, our communities pulled together … within six weeks we raised $130,000,” she said.
That was enough to convince the clinic that the Smiths had the support behind them to raise the required $250,000 minimum for listing and agreed to list Tom as a potential recipient. The next problem, however, was that, because of a shortage of donated organs, listed recipients in New England can wait as long as two years for a donated organ.
“I knew he wouldn’t survive that,” Marilyn Smith said.
That was a very difficult time, she said. Tom was very ill and Marilyn was striving to keep him alive.
“I was doing everything in my power to keep him alive. I knew it was possible. I knew a liver transplant would save his life and I was doing whatever I could to make that happen,” she said. “I had a tremendous support system. I have a huge family and community that pitched in. People just stopped in their tracks and said, ‘What can I do?”‘
Marilyn Smith learned about multiple listings on the Internet, and, although the Lahey Clinic does not participate in a multiple listing, they referred the Smiths to the Mayo Clinic in Florida.
On Nov. 4, the Smiths moved to Florida to face another battery of testing before he could be officially listed at the Mayo Clinic. He was listed on Dec. 27, and three days later he had liver transplant surgery.
“That’s almost unheard of,” he said.
Within five days, he had been released from the hospital. He suffered a mild rejection of the organ, which required a whole series of medications, but was working out daily by early February.
“I was trying to build up the strength I’d lost in the last nine months,” he said. “I’m still trying to do that. It’s amazing to me the amount of strength I did lose. But it’s slowly coming back.”
Smith recently passed a milestone of sorts. Although rejection can take place just about anytime, the first six months are the most critical time. He has been weaned off most of the medication, although he will be on anti-rejection pills for the rest of his life.
The pills were only part of the recovery protocol that Smith had to follow. There were a lot of different kinds of pills that had to be taken at specific times of the day.
In addition, preparation of food is very important. Fresh foods have to be washed carefully, and though he doesn’t care that he can’t eat grapefruit, Smith said he misses his rare steaks. All meats have to be well done.
He still has to have blood tests and must travel annually to the Mayo Clinic for a biopsy of the new liver.
And he has to wash his hands a lot.
“There’s a lot of cleanliness involved,” he said. “I’m easily susceptible to getting infection. And if I get infected, I could die of something that most people wouldn’t.”
Physically, Smiths said, he is doing fine. But there is also a mental and emotional aspect in his recovery.
“I feel like I’ve been given a gift,” he reflected. “That’s the way I feel every morning when I get up. I appreciate life a lot more.”
Sometimes, Smith says, it is overwhelming to think of all the people who did so much for him during his illness. He says it is also difficult to deal with the fact that someone had to die in order that he might live.
Smith says he does not feel different physically having someone else’s liver inside his body. He often, however, thinks of the organ donor’s family and their loss.
“It’s strange. It feels very strange to me. That’s why I think it’s so important to get a lot of information out there for people,” he said. “It is a life-saving event. And even though someone has died, a part of him or her still lives.”
Smith said he has asked about his organ donor, but the clinic does not release that type of information. He has written a letter, which will be delivered to the family, and they can decide whether they want to make contact or not.
“I’ve written it, but I haven’t sent it yet,” he said. “I’m not entirely happy with it. I’m trying to put my thoughts and feelings into words.”
Smith returned home from Florida on Memorial Day after stopping to celebrate his daughter’s graduation from the University of Delaware. He said he is looking forward to a lot of things now that he has a new lease on life: his daughter’s wedding, becoming a grandfather, the Red Sox repeating and being able to enjoy it, being able to live life without being in pain.
“But I’m also looking forward to helping those people who are going through the same situation,” he said. “There was a guy who’d gone through this and he came to talk to me; he gave me some insight about what to expect. He’d gone through it and he was healthy. That’s how I feel now. I was sick enough then that I didn’t realize it, but he instilled the courage to keep on fighting.”
That’s where the “Gifts for Life” benefit auction comes in.
“We’ve had so many guardian angels that helped us,” Marilyn Smith said. “We want to try to give back a little of what was given to us.”
Part of the auction’s proceeds will be used to defray some of the Smiths’ costs, but the funds will also help others facing the same kind of medical and financial crisis.
Auction items include a christening or wedding by Rev. Betty Stookey with famed Noel Stookey singing a lullaby or “The Wedding Song,” a classic 1974 Mercedes, vacations in Canada, Napa Valley, Toddy Pond and New York City, and a Pen Yan Runabout. There also will be a silent auction. To view the auction items, visit www.giftsforlife.autograff.com. Absentee bids are accepted.
The “Gifts of Life” benefit auction starts at 7 p.m. Saturday, July 23, at Sunnyfields Downeast, a private home, on Route 172 south of Blue Hill. A preview and reception will be held 5:30-7 p.m., July 23, and another preview held 5-7:30 p.m. Friday, July 22. Tickets are $35 per person. For more information, call Ginger Dewing at 374-2888. Rich Hewitt can be reached at bdnnews@downeast.net.
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