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Before undergoing artificial-heart surgery on Dec. 20, Margaret Daugherty “was in profound heart failure,” says her surgeon, Dr. Vigneshwar Kasirajan. She was bedridden and could barely speak. Now she’s back in action and ready for her next adventure.
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Clockwise from left: Because she enjoys bike riding, Margaret Daugherty likes to use the stationary bicycle during her twice-weekly physical therapy sessions in VCU Pauley Heart Center’s cardiopulmonary rehab room; Her husband, Brian Younglove, checks readings on the machine that powers her artificial heart; Daugherty practices tai chi in a park near the Richmond Coliseum.
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After a therapy session, Daugherty and Younglove leave VCU Medical Center. He hauls her equipment in a luggage carrier with a basket attached by elastic cords. The Home Depot store in Short Pump donated the setup when employees there found out what the items would be used for, he says.
On the morning of Dec. 15, Brian Younglove was irate. His wife, Margaret Daugherty, lay gravely ill at Vanderbilt University Medical Center, and it seemed that no one could do anything to help her.
The transplanted heart Daugherty had received 18 years earlier was barely functioning. For 12 days, since she'd been taken by ambulance to Vanderbilt, in Nashville, Tenn., from their home hospital in Lexington, Ky., they had held on to the hope that she could undergo another transplant. But that Wednesday, at about 8:15 a.m., the formerly upbeat cardiologist walked in looking downcast.
"He had a stream of tears coming out of his eyes," Younglove says. "He said, ‘There's nothing we can do.' " Daugherty's liver, kidneys and lungs were failing, the doctor told them. It was too late for a transplant. The only thing left to do was to send her back to Lexington and make her comfortable until she passed away.
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Without heart pump, 'I would have died'
Living with an Artificial Heart
An Interview and Slideshow with Margaret Daugherty
But Younglove wasn't ready to give up yet. He and Daugherty knew that in Virginia, VCU Medical Center was successfully implanting artificial heart devices in patients who were too sick to wait for a transplant. The couple was willing to give it a try. Daugherty, 44, says she had made peace with dying. Still, "I didn't want to be on my deathbed regretting not trying something."
Younglove says the doctors let him rant: "I said, ‘Send her to Richmond and give her a chance.' My thought was, put her on the table, and if she dies on the table, she dies fighting."
Reluctantly, he began the three-hour drive back to Lexington, dreading the task of delivering the bad news to friends and family. Then his cell phone rang. It was the cardiologist from Nashville, telling him that Daugherty was about to be flown out.
"I said, ‘To Lexington?' He said, ‘No, to Richmond.' " Suddenly, there was a glimmer of hope. "I thought, ‘What angel smiled on us?' "
One "angel" turned out to be Dr. David Booth, chief of cardiology for the Lexington Veterans Affairs Medical Center. As Younglove and Daugherty say they learned later, on Dec. 15, when Booth was informed that his patient was being sent back to Lexington for hospice care, he called an official in the Veterans Health Administration in Washington, D.C., on her behalf.
Booth had been in contact with Dr. Robert L. Jesse, the VHA's principal deputy undersecretary for health, about a book chapter he was writing, and he knew that Jesse, a Richmond resident, still holds a faculty position at VCU Medical Center and visits McGuire Veterans Affairs Medical Center for a regular cardiology clinic. In addition, Jesse previously served as chief of cardiology at McGuire, as director of acute cardiac care at VCU and later as the VHA's national cardiology program director and director of medical-surgical services. Given those roles, Jesse not only knows the VHA system, but he's very familiar with the artificial-heart surgeries being performed at VCU by university and McGuire surgeons — in fact, he was on call and took care of the first veteran who received an artificial heart in Richmond.
There already had been discussions between the Nashville cardiologist, Dr. Henry Ooi (who works in the Veterans Affairs system and is on the faculty at Vanderbilt) and McGuire's chief cardiac surgeon, Dr. Gundars Katlaps, about the possibility of Daugherty receiving an artificial heart. Booth says that there was concern that her rapidly failing health — in addition to keeping her from being a transplant candidate — might not allow her to undergo artificial-heart surgery.
Booth believed that Daugherty, whom he describes as "tough as nails," should have an opportunity to receive an artificial heart.
Jesse agreed. Noting that she's "a young woman who was already a long-term survivor of a heart transplant," he says, "I thought it was important … that we would do whatever we could to support her. I think we would do that for any veteran."
However, "There were some technical and clinical issues that were in the way of listing her for transplant," Jesse says. "There needed to be some sort of interim solution." He adds, "My role was that Dr. Booth called me, and I was aware of the programs and was able to make things happen quickly. In my current position, I was just able to say, ‘Yes.' "
After their conversation, Booth says, he called Ooi and told him, "I think we may have a window of opportunity to send her to Richmond."
Meanwhile, after hearing from Jesse, Katlaps contacted Dr. Vigneshwar Kasirajan, chairman of VCU's cardiothoracic surgery division, and they made arrangements for Daugherty to come to Richmond to be evaluated. Surgeons at the two medical centers work closely together, but all the artificial-heart surgeries are performed at VCU.
After a weather delay, Daugherty arrived in Richmond on Dec. 17 and underwent surgery on Dec. 20. In March, she became the medical center's first artificial-heart patient to be discharged from the hospital with a portable machine, called the Freedom Driver, that powers the device.
Now living temporarily at Richmond's Hospital Hospitality House, Daugherty and her husband and son take short trips to go shopping, walk in local parks, scout out fishing spots and look for more permanent housing. Because she's part of a clinical trial for the Freedom Driver, she must stay within 200 miles of the VCU hospital while she waits for a human heart transplant, something that takes an average of three to six months.
"Why stay in the hospital waiting?" she says. "The world is out there waiting to be experienced."
A Heart History
The story of Daugherty's heart trouble really starts in 1989, when the Rochester, N.Y., native, then 22, was stationed at an Army base in Germany.
She became ill with pneumonia and later developed congestive heart failure, a condition in which the heart is unable to circulate enough blood to the body. She was flown to Walter Reed Army Medical Center in Washington, D.C. There, she says, she was told she probably had a year to live. She received a medical discharge. Daugherty, then married with two young sons, moved to Washington state and lived with her family in a rustic cabin. By early 1992, her marriage had fallen apart, and her heart was failing. In a scenario that mirrors recent events, doctors in Seattle told Daugherty's mother that she was too far gone for a transplant.
"We got a lawyer, did the will and flew back to New York," she says. Daugherty's mother and brother took care of her and her sons, then ages 3 and 4. "We had the service all set up. There was a plot in the family cemetery. We had everything prepared." She adds, "I was only 25 years old. That's kind of young to die."
Unexpectedly, a cardiologist at the VA Medical Center in Canandaigua, N.Y., asked if he could send Daugherty's file to UPMC Presbyterian Hospital in Pittsburgh, where there was a transplant program. She went to Pittsburgh on Easter weekend and received her transplant May 9, 1992, the weekend of Mother's Day.
The only thing she knows about the person whose heart sustained her for nearly two decades is that he was an African-American man about six months younger than she was, and that he was athletic. "I can say I had a really good relationship with him for 18 1/2 years," she says. "When I received my heart, I looked at it as — this is a gift, and this person is a part of me." She did notice a few quirks after the transplant, such as a sudden obsession with bicycles and a craving she developed for extremely syrupy chocolate shakes — both of which she attributes to the heart donor.
Daugherty and Younglove met at a bowling alley in Rochester where he was working. It was two months after her transplant, right after she broke up with a boyfriend who, she says, couldn't handle the fact that she'd had a heart transplant. That didn't bother Younglove, a fellow veteran who served as a mechanic in the Army. "She was just another person who'd had her life changed," he says. He was attracted by her strength and independence. Daugherty describes him as patient and quiet. "He became my caretaker," she says. After they started dating, Younglove went with Daugherty to a doctor's appointment and learned that at the time, the life expectancy of a transplanted heart was about five years.
To her doctors' consternation, Daugherty became pregnant about four years after her transplant — a rare occurrence that she says could have been disastrous. Benjamin, her then-7-year-old son from her first marriage, had told her he wanted a younger brother. "I told him, ‘Go have a talk with God about it. If he wants to give you one, he'll give you one.' " At the time, Daugherty says she didn't think she could become pregnant because the medication she was taking disrupted her menstrual cycle. "Three weeks later, I became pregnant."
She says an inner voice told her to trust that everything would be all right. "I'm not very religious, but I believe in God," she says. Aided by Younglove's attentive care, Daugherty gave birth to her son Colin, now 14 and 6-foot-3, after what she calls "a picture-perfect pregnancy."
Buying Time
Booth says that when he saw Daugherty in March 2010, her heart seemed to be functioning well, but an echocardiogram showed a mild abnormality of diastolic function, the relaxation half of the heart cycle. The systolic function, or contraction part of the cycle, however, remained normal, he says.
No immediate treatment was planned, so Daugherty and Younglove decided to travel to Germany to visit her son Benjamin, who is serving in the Army there. "I wanted to take Colin around the world," she says. They stayed for a month, then returned to the United States and briefly settled in Charleston, S.C.
There, it became clear that she was in congestive heart failure, Daugherty says. In August, she had a pacemaker put in, and the family moved back to Lexington, where they have friends and extended family.
By early November, Daugherty's condition had deteriorated, and she was admitted to the Lexington VAMC.
When Kasirajan first saw her in December, "she was in profound heart failure," the VCU surgeon says. "She was barely able to speak." She had been on dialysis, he says. "We were very concerned about what was going to happen to her kidneys." Daugherty, who weighs 140 pounds, says her weight had ballooned to 220. "My legs had started to weep because there was so much fluid."
Her failing organs and the high number of antibodies in her blood would have complicated a heart transplant. If there are too many antibodies, they will attack the transplanted heart. But more critical was the lack of time. Kasirajan estimated that Daugherty had just days to live. Implanting the artificial heart "gives us time to work through those issues," he says. It also means Daugherty can wait for a heart that's a good match.
During surgery, the lower chambers of her heart and all four heart valves were taken out, and the artificial heart was implanted. The system pumps air through tubes to move the membrane inside the implant in Daugherty's chest. The movement of the membrane circulates her blood.
The 14-pound Freedom Driver, which she carries in a backpack, sounds a little like a fax machine on overdrive. Walking down Marshall Street from VCU to the Hospital Hospitality House, it's not noticeable amid the street noise. In an elevator, it's a different story. "Oh my goodness," Daugherty says. "I'd like to put a muffler on it. Some people look at you like you've just grown three heads."
The driver is powered by two batteries, which allow for about two hours of time untethered to an electrical outlet (they can also be recharged in a car). Daugherty jokes that she feels like an electric car. "We're plugging me in everywhere," she says, adding, "I like to to keep my batteries top dollar."
Each pump has a built-in backup, and patients carry another backup device, which Daugherty and Younglove learned how to switch in. After a training session, they had a real test in the hospital when Daugherty became sick to her stomach, and the contraction of muscles set off the Freedom Driver's alarm. To stop the alarm, Younglove switched to the backup unit as nurses stood close by.
Daugherty attributes her calm — and Younglove's — during the switch to their military training: "Assess the situation. Get it done. … You can have your emotional breakdown afterward."
Kasirajan says seven artificial-heart patients at VCU are taking part in the Freedom Driver trial. Without the portable driver, artificial-heart patients must stay in the hospital, connected to a 400-pound machine known as "Big Blue." After 30 people are discharged from participating medical centers with the device, the FDA will decide whether to approve it for wider use.
For now, the artificial heart is still a bridge to transplant, meaning patients must be transplant candidates. But in a few years, after improvements to the design and additional clinical trials, he says, patients may have the option of deciding against getting a transplant.
Despite all the attention on the artificial heart, Kasirajan emphasizes it's a small segment of the heart surgeries at VCU. Last year, the medical center implanted 21 artificial hearts in patients experiencing failure of both ventricles. But there were 850 heart surgeries in 2010, including 26 involving left-ventricular assist devices, as well as operations such as bypasses and valve replacements.
While she waits for a transplant, Daugherty is getting on with her life as best she can. That includes practicing tai chi, one of her passions, and getting her fishing license in Virginia so that she and Younglove can go fly fishing again.
"It's been a big adventure," Younglove says. After she gets a transplant, Daugherty adds, they plan to continue their adventure of showing Colin the world.
She also would like to see the artificial heart become a long-term option. She muses, "Let's say I stay on this five years and they come up with a heart that can be implanted in the body without all of this [external equipment]. It always gives you hope."
