Just a few months ago, Bill Shoenberger could barely muster the energy to walk across his living room.
He spent most of his days in bed, sapped of his strength by a deteriorating heart. Gone were the walks through the 14 wooded acres of his Dunbar Township property. Gone were the biking excursions and camping trips that he and his wife, Marsha, would enjoy. Gone were the rides on his Harley-Davidson and, for the first time this year, the chance to bag another trophy buck like the one adorning the wall high above his living room.
The 59-year-old faced a bleak prognosis: He could remain on the medications that had managed his heart failure and await a heart transplant, but his health and quality of life would continue to decline.
Instead, earlier this month, at the suggestion of specialists from the University of Pittsburgh Medical Center (UPMC), Shoenberger became the first person in Pennsylvania to undergo a new, minimally invasive procedure to implant a device that eased the heavy workload for his failing heart until he can undergo a transplant.
With the device in place, the “Pioneer Man,” as his doctors call him, enters the new year with renewed vigor and new hopes of doing the things he used to do as he awaits a new heart.
“I’m looking forward to my new life of getting back to my old life,” Shoenberger says. “I want to enjoy life to the fullest until my heart transplant comes along, and then I can enjoy it even more. It’s amazing what I can do today, and if I can get back to doing half of what I did before, I’ll consider that a huge success.”
A heart at risk
Shoenberger had always enjoyed fairly good health. An avid sportsman and outdoorsman, he had no trouble traversing the hilly terrain of his bucolic property, building his own home or handling the extensive walking necessary for bear hunting. Strolling through the grocery store with his wife was no challenge.
However, in February 2006, his condition changed. He grew easily fatigued, and he labored to breathe, so much so that he needed a motorized cart just to negotiate the aisles at the store.
Initially, Shoenberger attributed his energy crisis to the seven-day work weeks he was putting in as a heavy-equipment operator for a West Virginia-based stone company. But as his health worsened, he sought help from his family doctor. The physician at first diagnosed Shoenberger with pneumonia, but after three months of treatment, began to suspect that his patient’s problems originated in his heart, not his lungs.
In April 2006, a heart catheterization revealed that Shoenberger’s heart had swollen significantly, possibly as a result of a viral infection. He suffered from cardiomyopathy, which severely weakened his heart and led to heart failure. The decreased heart function also had caused blood and other fluids to back up into Shoenberger’s lungs and trigger his breathing problems.
Shoenberger took medications to manage his condition until 2012, when his heart “took a nose dive and the doctor said the medicines had run their course,” he says. This past spring, he was placed on a heart transplant waiting list and later underwent two months of treatment with the potent intravenous drug milrinone, but gained no benefit.
So, in late October, Shoenberger began conversations with Jay Bhama, associate director of UPMC’s artificial heart program and cardiothoracic transplant program, about undergoing surgery to implant a left ventricular assist device, or LVAD. The device is an implantable mechanical pump that helps deliver blood from the heart’s main pumping chamber, the left ventricle, to the rest of the body.
“He said we needed to do it sooner rather than later because as bad as my health was, I’d go through the operation relatively easily now compared to if I got sicker,” Shoenberger recalls. “He said he really didn’t think I’d make it to Christmas without getting worse.”
A new, life-saving approach
The LVADs from 10 years ago were bulky and required larger incisions and extra surgery to create an abdominal wall pocket to house the devices, Bhama explains. To place these older models, a surgeon had to fully divide a patient’s breastbone, or sternum, to gain access to the heart. A patient undergoing standard LVAD surgery could expect a hospital stay of at least three weeks to recover from the operation.
As the technology has improved, LVADs have shrunk in size, to the extent that they are now starting to be implanted using minimally invasive surgical techniques. On Dec. 3, 2013, Shoenberger became the first person in Pennsylvania to receive an LVAD using this new approach.
Bhama and his surgical team made a small incision on the left side of Shoenberger’s chest to place the Heartware® pump in the apex of the left ventricle. They divided only the upper third of his sternum to connect the outflow part of the pump to his aorta, the large artery through which blood is pumped to the rest of the body.
“With this minimally invasive approach, we were able to put the pump in with a smaller set of incisions, much less hospitalization, less pain and a quicker recovery,” Bhama says. “It’s a tremendous advance for patients to recover quicker, get out of the hospital faster, and get back to good quality of life sooner.”
Bhama says the new procedure requires less blood transfusion, and other surgeons who have performed the operation report that it also may reduce the likelihood that the heart’s right ventricle will become dysfunctional. Plus, the less invasive nature of the procedure should make any eventual transplant surgery less complex, he adds.
The minimally invasive approach is reserved for certain patients with end-stage heart failure who are awaiting a heart transplant. Other LVADs have been approved as “destination therapy” for longer-term use in patients who aren’t candidates for a heart transplant.
Shoenberger left the hospital Friday, Dec. 13, only 10 days after his surgery—the shortest length of stay for anyone undergoing LVAD surgery at UPMC, Bhama says. Shoenberger’s name was temporarily removed from the heart transplant waiting list, but he’ll return to the list once he recovers from the LVAD surgery.
“Hopefully, over the next few weeks to months as he recovers, he’ll be able to go back to enjoying the type of life he had before he developed heart failure and doing the things he wanted to do, like working in his garage, hunting, meeting up with his friends,” Bhama says. “He’ll be able to do what most people awaiting a heart transplant can do. The biggest thing is he will be alive. His heart failure won’t get the best of him before he gets a transplant.”
Living with LVAD
Although the LVAD is a life-saving device, it’s not without some burdens and limitations. The internal components of the LVAD are connected to an external controller placed in a case harnessed to Shoenberger by a sling that he wears over his shoulder.
The case, which also carries two rechargeable batteries, is a constant companion. Shoenberger sleeps with the controller case attached to his bed and wears it over his shoulder when he takes sponge baths. He has a battery charger for his home and a car charger for when he’s on the road. And, when he leaves home, he must carry a second case with a backup controller and two extra batteries as a precaution.
“They told me that it becomes second nature after a while. You just have to remember that it goes everywhere you go,” he says. “It’s my lifeline. If it quits, I quit.”
Shoenberger must adhere to a no-salt diet, and he’s not allowed to lift any weight exceeding 5 pounds.
He, his wife and their daughter, Jodi, of Greensburg, were educated about how to operate the LVAD and had to pass tests about what they had learned before Shoenberger could leave the hospital.
Marsha Shoenberger, employed as a lab technician at Jefferson Regional Medical Center, now uses some of her medical skills at home as a caregiver. She helps change the dressings at the site where the LVAD’s drive line passes through her husband’s skin and connects to the internal components.
She’s worked hard to remain strong, but she admits that the ordeal that her husband of 38 years has endured has taken a toll.
“It’s hard. It’s stressful and tiring, and it affects the whole family,” she says. “You just have to take one day at a time. I try not to worry too much. That’s the tough thing. There are a lot of emotions.”
As part of her new responsibilities, Marsha also has learned to check her husband’s blood pressure using a special Doppler device—since the LVAD pumps blood in a continuous stream rather than intermittently like a normal heartbeat, Bill Shoenberger now has no measurable pulse. Through a stethoscope, the whir of the LVAD sounds like a tiny washing machine in his chest.
“The doctors were joking with me that I could make bets with people that they can’t get a pulse on me,” he says, laughing.
Shoenberger says he continues to improve now that he has the LVAD. He tracks his progress 12 hours at a time, remembering how he felt 12 hours ago and imagining how much better he’ll feel 12 hours into the future.
“It’s just amazing that as short of a time I’ve been out of the hospital how much of a difference I can tell,” he says. “It seems like every 12 hours, I’m feeling better.
The days ahead
As he converses in his living room on Christmas Eve, Shoenberger remains hoarse from the breathing tube used in his surgery. Aside from his raspy voice and the small surgical scars that he proudly displays, he exhibits few signs of his illness.
A day earlier, he had climbed stairs for the first time since the operation. Two days before that, he had ventured out of the house for the first time post-surgery, taking a short road trip with a friend to Cabela’s, near Wheeling, W.Va. He takes walks around the house, accompanied not only by his dog, Gracie, but by a new “best friend”: the LVAD.
Short jaunts are all Shoenberger is allowed to take as he awaits a heart transplant. He must remain within two hours’ distance from the hospital and must always have a bag packed, just in case he gets the call that a donor heart has been found.
He’ll be in frequent contact with his health-care team and will make return trips to UPMC for checkups to monitor his progress.
“Mr. Shoenberger’s prognosis is excellent,” Bhama says. “Obviously, having heart failure is a limiting problem, and being on a device does mean that there are some things you can’t do that others without heart failure can do. But it’s far better than being in heart failure at home with no options and unable to do anything. …Our hopes are that Mr. Shoenberger will have a successful heart transplant and go on to have a wonderful post-transplant life.”
The Shoenbergers are already preparing for transplant day and for life afterward. They, along with a cadre of supporters, have started fund-raising efforts to offset some of the cost of the medications Bill will need after his transplant (estimated to be thousands of dollars a month). They’ve established an account at PNC Bank to accept donations to a transplant fund.
“We’re really fortunate with the fund-raising tickets and the friends and family and Facebook friends we have,” Marsha says. “With our family alone, we couldn’t do it ourselves. We really have good people who help us. I don’t think we can say enough about them.”
For Bill, the transplant should mean even fewer restrictions and should move him closer to a return to his former life, walking the woods, restoring cars, taking bike rides with his wife, and enjoying his two grandchildren.
“I can’t say that I consider myself unlucky. I’ve been dealt a hard blow in life, but I think that in general, I’m a lucky person just because of how things worked out,” he says. “I don’t feel lucky because I’m a ‘Pioneer Man.’ I just feel lucky because everything fell into place where I got this new surgery and I didn’t have to lie in a hospital for a month.
“I’ve been so used to being sick for these seven years. I’m just excited for the chance to be able to go out and do the things we used to do,” he continues. “Once the transplant comes through, that’ll be my new life—my new life going back to my old life.”