Man who got heart transplant plans to hike Appalachian Trail

 
 
Posted3/9/2016 5:32 AM
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  • To keep weight and expenses low, Bill Spence of Carpentersville made his equipment, including his camp stove made of soda cans.

      To keep weight and expenses low, Bill Spence of Carpentersville made his equipment, including his camp stove made of soda cans. John Starks | Staff Photographer

  • Heart transplant recipient Bill Spence of Carpentersville plans to hike the 2,190-mile Appalachian Trail this year to bring awareness to organ donation.

      Heart transplant recipient Bill Spence of Carpentersville plans to hike the 2,190-mile Appalachian Trail this year to bring awareness to organ donation. John Starks | Staff Photographer

Walking an average of 12 miles a day for six months along the Appalachian Trail from Georgia to Maine is a journey few have the inclination, or the guts, to tackle.

Imagine doing that as a heart transplant survivor, taking 37 pills a day and having to be mindful about everything from spider bites to small cuts, lest you get a potentially deadly infection. Such is Bill Spence's drive to inspire others to become organ and tissue donors, so more lives can be saved.

The 61-year-old Carpentersville man's goal is to prompt 2,190 people to register as donors, one for each mile he'll be walking.

"I've been given a gift that I am not going to waste," he said. "I'm going to make every use of it that I can and honor my donor by respecting my heart."

Spence, who got his new heart about two years ago, has been preparing for months for the hike, which he hopes to begin at the end of April. He expects to go through five pairs of shoes and lose 20 to 30 pounds by the time he's done.

"I'm going to go like a turtle: steady, however long it takes me," he said.

But isn't he putting his new heart at risk?

Fair question, Spence said.

"One could say that, most definitely," he said. "But that's where doing what my doctors have told me to do, and being consistent with that, has paid off. It's allowed me to be able to do what I am doing."

Janet Lenz, a nurse practitioner who runs the heart failure center at Presence Saint Joseph Hospital in Elgin, agreed.

"People get transplants with the idea that we are giving them back their life, some sort of normal life, and his represents the success of that," she said. "I do believe he is honoring the gift that he received by trying to help others."

Heart transplant patients require regular health checks and blood screenings for such things as antigens and medication levels. Lentz is working with Loyola University Medical Center, where Spence had his transplant, so he can get those done at medical facilities along the trail.

"There is some risk to this, definitely," Lenz said. "But I'm excited for Bill. ... Even if he doesn't finish, every step he takes on the trail is a victory for him, because he was so close to death. He's really unrecognizable today."

Spence's wife, Judy, echoed those sentiments. "His doctors would prefer he would have someone hike with him. I worry, but it's what he wants to do."

Life changes

Heart transplant recipient Bill Spence of Carpentersville in March 2014 during a checkup at Presence Saint Joseph Hospital in Elgin. Also pictured are nurse practitioner Janet Lenz, middle, and Dr. Erin Coglianese, right, of Loyola University Medical Center.
Heart transplant recipient Bill Spence of Carpentersville in March 2014 during a checkup at Presence Saint Joseph Hospital in Elgin. Also pictured are nurse practitioner Janet Lenz, middle, and Dr. Erin Coglianese, right, of Loyola University Medical Center. - COURTESY of PRESENCE ST. JOSEPH HOSPITAL

Getting his new heart Jan. 1, 2014, was nothing short of a miracle for the former software consultant stricken with major heart failure.

"I was dying," Spence recalled. "In December 2013, I was on my deathbed. My organs were failing and I didn't think I was going to make it past New Year's. I had made my peace with that. I had made arrangements."

Then, at 3 a.m. New Year's Day, hospital staffers said they were taking him to surgery. "I called my wife crying," he said.

Life changed almost immediately, Spence said.

"It really is amazing, because right after the transplant, everything starts working again," he said. "I was cold all the time. I had a grey-blue-white skin color. When that blood flow comes back, you feel warm all over, and the brain gets all tingly."

He went from not being able to walk from the couch to the kitchen, to vacuuming, cooking and doing the laundry. Judy said having her partner back is wonderful.

"He's able to help me out now," she said. "It was difficult for a long time."

The surgery was not without complications, though.

Bill has some loss of memory and feeling in his fingers, a result of nerve damage caused by the operation, he said.

Sometimes, his hand tremors are such that he'll drop a pill and not be able to pick it up. So what if that happens while he's hiking?

"I'll find a way around," he said, demonstrating how he can use a knife as a lever. "Where there's a will, there's a way."

Doing it himself

Bill Spence, 61, of Carpentersville plans to carry a 40-pound backpack for 2,190 miles next month as he hikes the Appalachian Trail. He got a heart transplant and wants to inspire people to become organ donors.
  Bill Spence, 61, of Carpentersville plans to carry a 40-pound backpack for 2,190 miles next month as he hikes the Appalachian Trail. He got a heart transplant and wants to inspire people to become organ donors. - John Starks | Staff Photographer

Spence has taken a do-it-yourself approach by building all his own equipment -- hammock, stove, quilts and more -- to save money and lower the weight of his backpack, which will be about 40 pounds. His stove, for example, runs on rubbing alcohol, is made of soda cans and fiberglass, and has a windscreen made out of a foil sheet pan.

An avid camper who loved being in the woods since he was a kid, Spence did tons of research online, connecting with fellow do-it-yourselfers and hiking companies that donated materials. "I used Judy's sewing machine for the first time in my life," he said with a grin.

He's also making his own food, the dehydrated variety of chili mac, beef stroganoff and barbecue spaghetti. One daughter is helping him with his website; another daughter is helping him with the quilts.

"It's still a work in progress," he said. "It's been challenging and exciting and nerve-wracking."

He'll have a cellphone and an iPad, and he plans to blog daily. But he won't be carrying everything he needs at all times -- his wife will send him boxes of food, medication and money that he'll pick up at mail stops along the way.

He's been training by wearing his loaded backpack and walking around his neighborhood in a roughly three-mile loop, but that's not the same as hiking in the woods, he admits. The first day will be especially tough, with a 604-step stairway in the first couple of miles and a change in elevation from 1,800 feet to 3,200 feet by the seventh mile.

"I do worry about that," he said.

Being grateful

Dr. David Bromet, Spence's cardiologist at Presence Saint Joseph, said Spence has passed exercise tolerance tests to ensure he can tackle the journey.

"Bill is kind of a stubborn guy. He's not ready to take no for an answer," he said. "We're going to let him do it."

Bromet said he's never had a heart patient attempt a feat of this sort.

"I'm not in good enough shape to do it, so I'm impressed," he said. "The idea that there isn't enough solid organs to go around is a real problem, and the fact that he's doing his walk to raise awareness, it's a very nice thing."

"I've been given a gift that I am not going to waste," Carpentersville heart transplant survivor Bill Spence says.
  "I've been given a gift that I am not going to waste," Carpentersville heart transplant survivor Bill Spence says. - John Starks | Staff Photographer

The Spences have five kids from previous marriages and a combined 17 grandchildren, the latest one born about a month ago. That's been one of the biggest pleasures of Spence's new life.

"If had not gotten the heart, I would have never seen them get any bigger," he said. "I just count myself as lucky. I can't be appreciative any more than I am of the things that I have. It's the little things that matter."

Spence is grateful to his medical team, too.

"I can't say enough good about these people. There are no words that can explain how I feel about them," he said. "The people at St. Joe's and the people at Loyola, if it weren't for them, I wouldn't be here. They kept me moving, they kept me going, they kept me hopeful. This is my way of saying thank you to them."

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