Lisa’s Long Battle for a New Heart

A typical account about an organ transplant recipient describes a life and death struggle. It portrays the uncertainty of whether an organ will be found in time until the moment when there is a life-saving intervention of a generous donor and the donor’s family.

But how many recipients can tell the story that while critically ill and hospitalized awaiting a heart transplant they were given a “half-day pass” to attend an only child’s wedding ceremony?

Incredibly, that’s precisely what happened to Lisa Abbey.

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In mid-2008, at the age of 41, Lisa’s heart condition had deteriorated to such an extent that she was admitted to the University of Rochester Medical Center/Strong Memorial Hospital where she would remain for four very long months to await a new heart.

For all that time, she would long to be home with her husband Clark in LeRoy, a village in New York’s Genesee County. But there could be no doubt how dire the situation was.

Doctors told Lisa that if she hadn’t checked into the hospital for medical tests she may only have lived for another three more months.

Week after week as she lay in her hospital bed facing a series of life-threatening obstacles, one of Lisa’s biggest fears was that she would not be able to attend her daughter Tara’s wedding. One consideration was a bedside wedding ceremony at the hospital—but the surroundings would inevitably have diminished the sheer joyousness of the occasion.

The Big Day – The Wedding

To their credit, the staff at Strong came up with a most unusual solution: Lisa was given permission to leave the hospital for four hours so that she could get to the church ceremony on Tara’s special day.

So it was that on August 22, 2008 Lisa could fulfill her dream of attending the wedding ceremony of Tara to Doug Stella, even though she would miss the reception.

Lisa left the hospital in a wheelchair with an intravenous tube continuing to supply much-needed medication. And she was accompanied by a registered nurse, a friend of her sister, Mary Barber who also happens to be a RN.

It certainly was a joyful, once-in-a-lifetime experience, but there could be no doubt that it was also bittersweet.

Despite the elation of witnessing the marriage, reality hit the instant Lisa returned to the hospital: She still didn’t know how much longer she would be confined to her hospital bed—or even whether her life would be saved.

Diagnosis of a Congenital Heart Disease

As a child, whenever she visited a doctor, Lisa was told that she had an innocent heart murmur. On its website, the American Heart Association describes this type of heart murmur as revealing itself with “harmless sounds made by the blood circulating normally through the heart’s chambers and valves or through blood vessels near the heart.”

The AMA states that innocent heart murmurs “can be common during infancy and childhood and often disappear by adulthood.” Accordingly, Lisa was not noticeably affected by any type of symptom and, indeed, she was informed she would outgrow the murmur.

However, by the time she was 19, Lisa discovered that she never did have a heart murmur. The situation was much more serious.

It first became evident when Lisa would do what she describes as “little things,” like getting off the couch to walk to the kitchen. Her heart suddenly felt like it was skipping or jumping, and she would feel dizzy.

“Those symptoms,” Lisa recalls, “led me to my primary doctor who realized that something definitely was wrong, that it wasn’t simply a heart murmur. He sent me to a cardiologist, Dr. Theckedath (Tim) Mathew at Rochester General Hospital who became my savior.”

After meeting with Dr. Mathew and undergoing tests, Lisa was diagnosed with hypertrophic cardiomyopathy (HCM), a congenital heart disease that affects the heart’s muscle. The prognosis was a matter of concern: HCM can cause suddenly unexpected cardiac death and is especially severe among younger people.

Subsequently, Lisa’s father was also diagnosed with HCM. Sadly, he died in 1995 at the age of 52 as a result of complications with his diseased heart.

Even though Dr. Mathew made it clear that she would have to be on medication for the rest of her life, Lisa confesses she was in denial.

“It was probably just a blip,” she remembers thinking. “I didn’t want to believe that I had HCM. After all, my whole life was supposedly before me and Tara who was two at the time.”

A Debilitating Illness

Nonetheless, the negative impact for Lisa was undeniable. Her whole life changed and of great concern was the fact that she wasn’t able to spend more time with her daughter.

“I couldn’t teach Tara to ride her two wheel bike,” Lisa says. “I also couldn’t take her out trick or treating when she was little because I couldn’t walk any distance. Thankfully, my mom and dad and three sisters Theresa, Mary, and Anne would step in to allow her to enjoy Halloween.”

“I felt like a 90-year-old in a 30-year- old body.”

Lisa adds: “Anne and Theresa would walk her to kindergarten or get her ready for her school pictures.”

Throughout Lisa’s 20s and 30s, instead of being able to stabilize her health, symptoms continued to arise that indicated her heart disease was quickly worsening.

“I felt like a 90-year-old in a 30-year- old body,” Lisa says. “I would see older people passing me when walking in the grocery store and in other places. It was very depressing.”

As her HCM progressed, Lisa experienced what she calls “many ups and downs,” including open heart surgery, valve replacement, pacemaker and implantable cardioverter defibrillator (ICD) surgeries, and ablation (a procedure designed to treat arrhythmia).

Lisa had always worked full time and her career was important to her. But at the age of 35, with her illness so much more debilitating, she was forced to stop working—at first, cutting down the hours, and then by going out on permanent disability.

Leading up to this, Lisa had repeatedly been in and out of congestive heart failure. She endured multiple heart episodes at her office, bouts of fatigue and trips to the ER, all the while attempting once again not to acknowledge how sick she was.

The impact of any major disease and permanent disability has many consequences, not least of which is the pressure it places on a family’s financial well-being. In this respect, Lisa says, she was truly blessed to receive never-ending love and support from her “wonderful husband Clark” who is a self-employed roofing contractor.

“When I couldn’t work anymore we had to get health benefits through the Small Business Bureau and pay ourselves,” she says. “It was all very expensive but Clark never faltered. He worked hard and he kept telling me we would get through this. And we did.”

The Only Solution: A New Heart

By the time Lisa turned 41, she was so weak she was sometimes forced to get from point A to point B in a wheelchair.

As she describes it, after years and years of trying to keep her heart functioning, “it was clear nothing was going to fix it. I was still symptomatic and fatigued and bogged down by what I could do and could not do to experience life as a normal healthy person.”

The only solution, Dr. Mathew told Lisa, was a heart transplant. He referred her to Strong Memorial so that she could be evaluated. Lisa underwent tests at the beginning of June in 2008 and, she says, “I thought I was only staying for a couple of days but, after they did the tests, they told me, ‘You’re not going home. You need to stay here until a heart becomes available.’”

It was then that Lisa learned she would have died within a few months if she had avoided the medical tests.

I just wanted to go home, but to go home meant the end of my life.

For Lisa, staying in the hospital for what would turn out to be four months was the hardest part, even though she knew there were other patients waiting much longer.

“Mentally it was a huge challenge,” she says. “I cried every single day and just wanted to go home. I had control over nothing. I just wanted to go home, but to go home meant the end of my life.”

It was while she experienced this traumatic ordeal that Lisa was given permission to attend Tara’s wedding. She notes how the hospital nurses were “so supportive—they even helped me style my hair.”

It was approximately three and a half weeks later, on September 15, 2008, that Lisa at long last received her new heart. By then, she had turned 42 on July 18 during her enforced stay in the hospital.

A Brand New Life

Lisa is enthusiastic when she describes how she continues to thrive since the transplant. “My health after five and a half years with this beautiful heart is excellent,” she says. “I am so thankful and grateful every single day. I walk and run, and I’m now able to pass other people anywhere I go. I never thought I could feel so good!”

With her health restored, Lisa is once again able to work full time. She is employed in the medical records department at HCR Home Care in Rochester, and she will celebrate her fourth anniversary working at the agency in July. She loves working there.

“I have an awesome manager and co-workers,” she says. “It is so important to have a job that can give flexibility to someone like me. I was given another gift by finding the right place to work after transplant.”

Lisa has a long list of people she’d like to thank for helping her to get through the very difficult times, and she says she has so many reasons to be grateful. For one thing, Lisa and Clark have three grandchildren and they are ecstatic that they can spend so much quality time with Brynley (7), Isaac (4), 10- month-old Adalyn and their parents Doug and Tara.

Without her transplant, Lisa realizes she would never have gotten the chance to know them. As she says, “They are the light of my life, my joy.”

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As she goes down her thank you list, Lisa acknowledges her loving husband, Clark; Tara who was juggling life with a new child to come and sit with her and did everything she possibly could to be there by her side, and Mary, her sister and “best friend.”

In addition to immediate family, she acknowledges her transplant surgeon, Dr. H. Todd Massey and the transplant team at Strong; “all the nurses on 73400 at Strong Memorial” including those who helped arrange the wedding outing; great friends she considers family and, with the deepest affection, Dr. Mathew.

“My blessed Dr. Mathew kept me alive for 20 years,” Lisa says about the cardiologist who attended to her with unending dedication and care since her diagnosis as a teenager until her transplant.

“Harry is everything to me.”

Most important, Lisa gives thanks to the donor of her heart and his family.

After writing to thank her donor’s family, Lisa now knows that her donor’s name was Harry. His wife wrote to say that Harry had been in the military and academics, and that she and her son—who at the time was only seven—had read Lisa’s letter together.

Harry’s wife informed Lisa she and her and son laughed and cried as they read the letter but mainly they were happy to hear from her. “They knew he was the type of man that would want to help people even after his sudden death.”

Recounting how she felt when she wrote to her donor family, Lisa admits it was extremely difficult to adequately express her gratitude. “Saying thank you is hardly enough. These people literally saved my life and gave me a brand new one—an incredible new life.”

With Harry’s heart beating inside of her, Lisa feels very close to him. She senses that she can count on him even when she is working out, part of her regimen for staying healthy.

“When I’m struggling to get through my workouts, I talk to Harry and ask him to please help us get through this. And he does! He has gotten to know me and I imagine he is pretty amazed that he got me and I got him. Harry is everything to me. He changed my whole life and world, and that of my family and friends.”

At the time Lisa was able to escape her hospital bed, though briefly, to watch her daughter get married, she didn’t know it was Harry who would allow her to leave the hospital in good health and with more energy than she had ever experienced.

That’s why Lisa is determined to always show her appreciation for being given a second chance. As someone who knows first-hand the importance of organ donation, Lisa now devotes some of her time to volunteering for Finger Lakes Donor Recovery Network. “The word must get out about the importance of donating,” she says.

Lisa says she knows how lucky she is. How close she came to losing her life.

“So I’m trying my hardest to take care of this beautiful heart. I plan on keeping it healthy and being here for a real long time. One decision can change many lives. I get to see my grandchildren and daughter grow, and I get to feel the joy. All that I needed was a new heart to be a whole person.”

 

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