To say Pat Sullivan and Bob Romer are bonded for life would be an understatement. Recent heart transplant recipients at Tufts MC’s Heart Failure and Cardiac Transplant Center, their extended, intertwining sagas are analogous to Frodo and Sam’s quest in The Lord of The Rings trilogy: harrowing, life-threatening, ultimately successful, and unquestionably epic.
Midway through their yearlong stay at Tufts MC’s Cardiomyopathy Center, waiting for matches on the heart transplant list, they promised each other if they made it out alive, they would launch a foundation to help their fellow heart failure/heart transplant patients and their families. Spoiler alert: Their story has a happy ending—that’s exactly what they did. But we’re getting ahead of ourselves.
“We met in a rehab center in February 2012,” says Pat, 60. “We had both gotten LVADs within a week of each other.” An LVAD, or Left Ventricular Assist Device, is a surgically implanted, battery-operated heart pump, aiding a heart that no longer functions effectively on its own.
LVADs are generally reserved for end-stage heart failure patients who have not responded to standard treatments—including a veritable medicine chest of heart-helping drugs, less dramatic (though still serious) surgical options, healthy diet, exercise, smoking cessation and strict sodium restriction—and may be a long-term solution or, for patients who fit the health requirements, a bridge to heart transplant.
First adjusting to life with an LVAD, “I couldn’t even stand up,” says Pat, recalling how weak he was when he and Bob, 53, initially met at extended care facility, Kindred Hospital. Bob empathized, revealing that his condition had been the same two weeks earlier. Hearing this from a now-mobile man bolstered Pat’s spirits.
The pair began talking, exchanged numbers when Bob was discharged soon thereafter, and settled into their respective places in the ever-shifting queue waiting for their new hearts—the lives of both heart failure patients, for the time being, sustained thanks to their LVADs.
Five Million Afflicted with Heart Failure
The American Heart Association (AHA) estimated that 5.7 million Americans suffer from heart failure—a degenerative subset of cardiovascular disease in which the weakened heart is unable to sufficiently supply the body with blood. To compensate, the heart enlarges, pumps faster, constricts blood vessels, and deprives other organs of blood—the body’s reflexive stop-gap to save itself, which it does (sometimes for years)—until shortness of breath, difficulty breathing, fatigue, weakness, arrhythmia, chronic coughing, wheezing, fluid retention, sudden weight gain, and/or other resulting symptoms flag its progression, often spurring a doctor visit and diagnosis.
When it comes to heart failure, 65 is something of a magic number. According to The New York Times, most heart failure diagnoses occur past age 65, and for those in this demographic, it is both the most common reason for hospitalization and the leading cause of death.
And yet, heart failure can strike at any age, as was true for Pat and Bob—both, coincidentally, diagnosed at 38. Though primary risk factors include coronary artery disease, heart attack, and high blood pressure, Pat’s heart failure was likely genetically inherited, while doctors are still unsure what triggered Bob’s onset.
“Bob did not have coronary disease, and his heart failure was considered idiopathic,” or of unknown cause, explains Dr. David DeNofrio, Director of Tufts Heart Failure and Cardiac Transplantation Center, and overseer of both men’s care for many years. “Pat had a cardiomyopathy with associated coronary disease,” and both ultimately developed dilated cardiomyopathy with end-stage heart failure.
Men between the ages of 20 and 60 are prime targets for dilated cardiomyopathy—the most common type of cardiomyopathy, or disease of the heart muscle—in which the heart has become weakened, enlarged, and inefficient at pumping.
“We are learning that more and more patients with dilated cardiomyopathies have a genetic component and this is an area of intense research,” says DeNofrio, pointing out that Dr. Gordon Huggins, Tufts Cardiologist and Molecular Cardiology Research Institute (MCRI) Center for Translational Genomics Investigator, is actively studying the genetic determinants of dilated cardiomyopathy, a frequent precursor to heart failure.
Approximately 570,000 Americans are living with advanced, or end-stage heart failure, according to the AHA—so defined when traditional treatments stop working and patients feel symptoms like shortness of breath even at rest.
The Heart Transplant List
End-stage heart failure patients land on Tufts MC’s transplant list if their life expectancy is two years or less. At the moment, that queue contains approximately 100 patients, says DeNofrio. “We did 24 heart transplants in 2014 and over the last five years, we have done the most heart transplant procedures in New England.”
Wait time on the transplant list depends on status, continues DeNofrio. “Sicker patients are a higher priority than less sick patients. Blood type (ABO compatibility), and body size,” are also factors. “Some blood type patients wait longer than others—O blood type patients have the longest wait since they are the most common blood type and are universal donors. Smaller patients have more opportunity for donors than larger patients because there are more small donors.”
“Our region has the longest heart transplant waiting times of any in the country,” says DeNofrio, “due to limited donor availability and the large number of patients on the list.”
To be a candidate for transplant, “the rest of the patient’s body must be in good condition with adequate lung, kidney and liver function,” DeNofrio says. “Patients should not have any other disease that would significantly limit their life expectancy and must undergo an extensive evaluation prior to being placed on the transplant list.”
In The Trenches
July 21, 2012, 10 weeks post-discharge from Kindred Hospital, Bob’s defibrillator kept going off, likely indicating a lethal heart rhythm, and he called 911. When the EMTs arrived, seeing Bob’s LVAD, they immediately called Tufts MC Cardiac Surgeon Dr. Duc Thinh Pham.
Applying electric shock is the paramedics’ standard response to a patient in a lethal rhythm. But Pham confirmed Bob’s case was complicated by the LVAD. “‘As long as he’s talking,’” Bob recalls Pham telling the paramedics, “’just bring him in [to Tufts].’” That hospitalization marked a new epoch in his waiting game. “I wasn’t going anywhere until heart transplant.”
Meanwhile, back at Kindred, Pat had contracted a MRSA infection in his LVAD’s driveline—the cord connecting internal pump to external battery source. Hospitalized patients—especially those with weakened immune systems and/or invasive medical devices—face an elevated risk of infection via MRSA, an antibiotic-resistant Staphylococcus bacteria, due to its ability to spread even when carriers show no symptoms.
A month later, Pat’s infection intensified. No longer responding to the usual MRSA-effective antibiotics, doctors administered “a med that had never been given to an LVAD patient,” Pat says, after weighing potential risks and agreeing this was their best option. “It worked phenomenally well on the MRSA. But my LDH blood levels—an indicator of LVAD clotting—went way out of control.” By September, Pat was transferred to Tufts MC’s Cardiomyopathy Center, where he and Bob were floormates once more—both under Dr. DeNofrio’s orders to remain there until their heart transplant surgeries.
Unrivaled Cardiac Care in Boston
The Cardiomyopathy Center is “an amazing, amazing unit,” says Pat. “They have one nurse and one tech for every two patients. I have never seen doctors and nurses so knowledgeable. These nurses were far beyond anything I have ever been exposed to.”
Bob concurs. “I know patients who have had to go to other hospitals,” he says, and the moment “they see that heart pump, they can’t get them transferred to Tufts MC fast enough. The other hospitals don’t perform heart transplants.”
Open since 2003, “the inpatient Cardiomyopathy Center is a unique place to manage advanced heart failure patients,” says Dr. DeNofrio of “New England’s first intermediate care facility dedicated to patients with advanced heart failure. This innovative 14-bed unit allows physicians and nurses the opportunity to focus cutting-edge heart failure protocols, competencies, and procedures in one hospital location, streamlining care for our patients.”
Upon reaching end-stage heart failure in 2011, Pat clearly remembers his cardiologist’s words. “‘I’m only sending you to Tufts. You’re like a brother to me, and I’d send my brother to Tufts.’ He wanted me to go to the Cardiomyopathy Center. I don’t know if I would have made it through if I wasn’t there.”
The Cardiomyopathy Center’s “heart transplant team is multidisciplinary,” says Dr. DeNofrio. “Patients come in contact with almost every service in the hospital. This includes cardiologists, cardiothoracic surgeons, nurses, nurse practitioners, infectious disease doctors, pharmacists, nutritionists, and social workers. Our team works together to provide world-class care for our patients with advanced heart failure.”
The Waiting Game
“Once we were both back in the hospital for good,” Bob says, Pat’s mobility was limited, and he was mostly confined to his room. “I was able to get around, and I would come visit Pat on a daily basis. We talked about a lot of things: family, compared numbers—medical numbers. We got to meet each other’s families. We even got to meet each other’s dogs.”
“We talked about how hard it was on our families” to be hospitalized for so long, Bob continues. “I don’t have any children, but I’m one of 11 kids. Not only was it hard on my wife, Susan, it was hard on my 10 siblings. We all became quite close.”
Seeing the family toll of their grave illnesses combined with extended hospitalizations, “we said, ‘If we get out of this hospital alive—and the odds are not high—we’ll give back,’” Bob remembers. “There was no larger organization or group to provide support for the families. There’s a lot for cancer, but…really nothing for heart failure patients.”
Pat agrees. “We got to talking to other patients and found other needs. We started to see gaps. Between just gasoline and parking, it cost my family about $10,000. Someone was there almost every day.”
“They feel the need to be there every day,” interjects Bob. “They try to take everything on and try to do too much. It’s stressful. To try to get into the hospital every day is just adding to the stress.”
And for some, that kind of hospital presence just isn’t possible, as was the case for fellow Cardiomyopathy Center patients whose families lived several hours from Boston and struggled to find time to visit while working to make ends meet. “It’s very costly,” says Pat, “even with the best insurance.” Bob and Pat, each based about an hour from Tufts, realized how blessed they were to have their loved ones nearby, and plans for a heart failure support foundation began to take shape while they continued to climb the transplant list.
The Best Thanksgiving
Due to Pat’s ongoing complications, Dr. DeNofrio and the cardiothoracic surgical team had been discussing the possibility of replacing his LVAD with another. FDA approval of the HeartWare System, a smaller LVAD implanted solely in the chest cavity (as opposed to then-current models which required components inserted into the abdomen), was expected any day.
November 20, 2012, the FDA approved the HeartWare System. The following evening, the surgeon entered his room with several nurses. Pat expected them to discuss implanting the HeartWare. Instead, they said, “‘We found you a heart.’” Pat recalls. So long and affecting was the road to this moment, “I wouldn’t believe it. My focus had been on getting the new LVAD. I didn’t dream I’d get the heart at that point.”
The emotional process “was unbelievable,” Pat says. “Other than when my son was born,” hearing that a heart match had been found “was the most emotional moment I’ve ever had in my life. I burst into tears.”
“I had walked by the room,” about this time, Bob says, “and I saw Pat’s wife, Leslie, standing there in a state of shock,” with the full medical team in the room. “I was very worried, as the look on her face troubled me. A short time later, Pat asked me into his room and I found out he was getting a heart.” Living in the Cardiomyopathy Center, “you get close to one another and you’re rooting for each other.” Hearing Pat’s wonderful news, “I had to go back to my room and calm down because my heart was beating very fast. I was fearing another arrhythmia. I was prone to them.”
On the flip side, Pat admits, “I felt very guilty. Bob had been in there a month longer than me, and I was thinking, ‘Why me, not Bob?’ I just happened to be in the right place—the sickest guy in New England with the right body shape, weight, blood…everything has to be perfect.”
A highly synchronized surgical lineup performed Pat’s 10-hour heart transplant procedure. Dr. Kenneth Warner, Chief of Cardiothoracic Surgery, led the team removing the LVAD, while Dr. Pham retrieved the heart and oversaw its implantation. Pat remained in a medically induced coma for a day following the surgery to keep his blood pressure up and allow his new heart to get into a comfortable pumping rhythm.
“I woke up on Thanksgiving Day with a new heart,” says Pat. Three weeks after his heart transplant, and one year following his first heart failure-related admission to the hospital, Pat was released from Tufts MC in time for Christmas. As Pat’s condition had always been on the more tenuous and complex end of the spectrum, complications led to pneumonia—“I had to go back in the day after Christmas until the end of January,” says Pat, but “if I had to be anywhere, that was the place.”
LVAD v. Heart Transplant
By comparison, heart transplant and subsequent management are less involved than those for LVAD implantation, though DeNofrio points out both are major cardiac operations with “different challenges and complications.”
“LVAD patients have a different quality of life because they have to manage the pump along with battery changes and driveline dressing changes,” at the power cord’s abdominal exit site, says DeNofrio. “When they take a shower they have to use a special shower kit because getting the LVAD components wet will short circuit the device.” There is also an ever-present “risk of bleeding, infection, pump thrombosis, stroke, and pump failure.”
“In transplant recipients, quality of life is more normal. You can go swimming,” DeNofrio continues, “and shower normally. Long-term risks are rejection (the patient’s immune system attacking the donor heart) and infection (due to immunosuppressive medication to decrease the risk of rejection).”
Top-notch medical care and vigilant monitoring via frequent follow-ups further decrease these risks. “The survival rate following transplantation is 85-90% at one year, 75-80% at five years, and about 50-60% at 10 years,” says DeNofrio. Some live 20 years post-transplant, “but they are a very small percentage of patients. You have to look at this against the odds that most patients with end-stage heart failure in need of a transplant would otherwise" have a lifespan of only one or two years, and a diminished quality of life.
Bob’s Wild Ride
Following Pat’s transplant, Bob’s wait became “a little bit of a roller coaster, because after Pat got his heart, there was a big drought in the region,” with very few hearts available for transplant, he says. “We lost three friends—patients on that floor—in that period. I could feel myself getting worse, and I was worried.”
“The roller coaster kept going,” he continues. In late January 2013, the doctors “told me they had a heart for me. My wife was home, and I called her. And she came” to Tufts MC, he says, his voice thick with emotion. “Later that night they came in and said I’m not getting the heart.” The decision had nothing to do with Bob’s health, and everything to do with a highly sensitized patient at another New England hospital being a match for the donor heart.
“Some patients have many antibodies to potential donors—the likelihood of them getting a heart that is a good match is very slim. There is an agreement between all New England Organ Bank heart transplant centers to offer these donor hearts to these highly sensitized individuals first if they are a perfect match,” explains Bob. “That way the available heart will go the candidate most in need.”
“The very next day they came in and told me they had another heart for me,” says Bob, but issues with the donor heart ultimately impeded the match.
“The odds of getting a heart are, I think, about 50/50 in New England,” says Pat. “You know those odds when you’re in there [on the waiting list]. I wouldn’t go to Foxwoods on those odds.”
“I was actually—at that point in time—trying to calculate how long I had to live,” says Bob, based on how he had felt in October versus January. “What you’re afraid of, is that you’ll get too sick and they’ll take you off the list because you won’t survive the surgery.”
And then: a miracle. “February 13th, they told me I was getting a heart. I didn’t know what to think.” Hours later, a member of the surgical staff returned to his room at “about 4am, and said, ‘I’m taking you down to surgery.’” Bob pauses. “This is now Valentine’s Day.”
Given the emotional and physical roller coaster leading up to this moment, “I wasn’t worried about the surgery,” he says. “I was looking forward to it.”
As with Pat’s procedure, Dr. Warner led Bob’s LVAD removal team, while Dr. Pham performed his heart transplant. In all, Bob’s surgery took approximately eight hours. Post-op, “I had a little fluid around the heart because my heart was so big and my new heart was smaller,” Bob says, and therefore remained in the Cardiomyopathy Center for a little over two weeks. Bob was discharged in early March 2013 and has been enjoying life ever since.
A New Lease On Life
“I’ve been able to golf and ski,” says Bob, who has avoided hospitalization post-transplant.
Pat’s experience has been more complicated. In addition to his aforementioned post-transplant stay at the Cardiomyopathy Center, “the following June, I was in for a month with a lung infection.” He considers it par for the course, explaining, “our immune systems are suppressed.”
Late spring 2015, he was admitted overnight for a ventral hernia surgery, which “happens a lot with former LVAD patients.” After all he has endured, he files these setbacks as “no big deal. I can’t swing a golf club yet, but I’m doing fine.”
Fine indeed. Several months post-transplant, Pat, Leslie, Bob, and Susan vacationed in Hawaii for two weeks—fulfilling a promise made while residing at Tufts MC.
As for that other promise, September 1, 2014, Pat and Bob officially launched HeartBrothers—their 501c3 non-profit foundation dedicated to financially and emotionally supporting patients and families grappling with the effects of heart failure, ventricular assist devices, and heart transplants.
On the financial front, “wherever we see a gap, we want to fill it, if at all possible,” Pat says, citing HeartBrothers’ goal to reimburse items ranging from transportation, parking, and hotel bills incurred while visiting heart failure patients, to medicine, co-pays, and other rapidly accruing associated expenses not covered by insurance. Private donations and corporate grants thus far have subsidized HeartBrothers’ cause, and the foundation is actively seeking further contributions, with plans for future fundraising events.
Yet perhaps the most glaring void is due to the psychological toll of the transplant odyssey. In addition to their foundation’s online support community, once a week, Pat and Bob serve as Team HeartBrothers, returning to Tufts MC’s Cardiomyopathy Center for one-on-one patient visits, demonstrating living proof of life after transplant, and lending the emotional acuity needed to outwit the coming obstacles—a role Bob describes as healing, inspiring, and fulfilling. “It may take a year, it may take three years, but eventually, you’ll get a heart and live a great life,” Pat frequently tells patients.
Providing this kind of mutual support is what saw Pat and Bob through their own sagas. “Some people were getting worried because we were getting so close,” Bob recalls. “We lost friends, and—”
“—It hurt,” Pat interjects, finishing Bob’s sentence like a true brother. “It’s like going into a foxhole. We talked about things that men don’t usually talk about. Deep things. It all came down to love for your family and your fellow patients. You shared things with your fellow man that you normally wouldn’t share. A big part of the HeartBrothers Foundation is that.”
HeartBrothers’ programs are currently offered at Tufts MC, word is spreading, and other hospitals are beginning to take notice. Last fall, Pat and Bob were featured panelists at Tufts MC’s 7th Annual New England Heart Failure and Network Transplant Conference—an event drawing 150 regional doctors and nurses—which led to a speaking panel at the 10th Dartmouth Conference on Advances in Heart Failure.
“They are fantastic human beings,” marvels HeartBrothers Board of Directors Member Dr. DeNofrio, “and are really making a difference for patients and families struggling with heart failure.”
Both gentlemen are on immunosuppressants for life, obey the dos and don’ts within Tufts MC’s 60-page Cardiac Transplant Patient Education Guide, and adhere to Dr. DeNofrio’s prescribed follow-up schedule: monthly visits the first year and every three months thereafter for clinical assessment, labs, and cardiac testing. Despite these adjustments, they remain grateful, and feel forever indebted to the team at Tufts MC.
“I can’t say enough about the surgeons,” says Bob, citing the synchronization and skill of Dr. Warner, Dr. Pham, Dr. DeNofrio (“he oversees everything and is well-known, for very good reasons”), and Dr. Michael Kiernan, Director of the Ventricular Assist Device Program. “He’s as good a doctor as he is tall—6’9” maybe,” quips Bob of Kiernan.
Pat echoes this praise, adding kudos to Linda Ordway, Cardiac Transplant Center Nurse Practitioner, who, along with Kiernan, and Tufts Heart Transplant Coordinators Deborah Fleck and Heather Cote, sits on the HeartBrothers Board of Advisors. “She’s phenomenal,” he says, “as well as all the transplant and LVAD coordinators—they’re all just top-notch.”
The HeartBrothers agree: they are alive today thanks to this combination of world-class care, their newly forged brotherhood, and a perpetual sense of humor. “That’s what got me through the hospital,” says Bob.
“We laughed a lot,” Pat adds. “Maybe it was a defense mechanism, but I think a sense of humor is…huge.”
Pat and Bob look to the future with optimism—“I know a gentleman living 28 years post-transplant right now,” says Pat—and remain committed to enjoying every day and supporting their fellow patients..
“Whenever I talk to one of my Team HeartBrothers,” says Pat, “it brings a smile to my face, knowing they made it through.”
For more about HeartBrothers, visit http://heartbrothers.org/.