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Holding
Onto
by
Charlise Lyles &
Andrea Cain
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First
a Transplant for a Mother Diagnosis:
Cardiomyopathy The heart began to fail this vibrant mother just as she was picking up the pieces of her life from a divorce and reestablish a strong household for Marques and his two older sisters, Krysten (15) and Noelle (13). It failed her so badly that she had gone from working two jobs to barely being able to walk the 50 feet from their two bedroom apartment to the elevator without losing her breath. Its feeble pumping caused her to wake in the night startled and cold. Her heart sent her in and out of the hospital for over two years. "Dobutamine
Holiday" Holiday
Over Although Marques’ grandmother, who had taken him and his sisters in after her only daughter, Andrea, was hospitalized, never spoke of it, there was a fear, an aching feeling that lingered: Would his mother ever come home again? Rebuilding
Life with a New Heart
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Marques was doing well and growing like a weed.
From time to time, Andrea wondered what had caused her illness. Was it really a virus as the doctors suspected, or had something else stolen her heart? Daily activities pushed that mystery to the back of her mind.
Critical Illness Strikes Again Six years later on May 5, 2005, while in downtown Cleveland, fate turned on Andrea and Marques to reveal the mystery that had stolen her heart--and was about to take her son’s. While crossing a street, Andrea turned to noticed her son lagging behind his sisters, Krysten and Noelle. She called him. “I can’t keep up,” he huffed in reply. “I’m short of breath.”
Andrea's nurses' training kicked in. Back home she put her ear to her son’s chest and listened to his heart. The right side of the heart was diminished--it was getting little airflow. “A red flag went up,” Andrea recalls. “I called the doctor.” She thought Marques had pneumonia. That day Marques and his mother drove to the hospital. They made the 10 minute trek from a parking lot the Cleveland Clinic. By the time they reached the Clinic's waiting room, Marques was out of breath. Twenty minutes later the doctor came in and Marcus was still short of breath. Andrea later learned that Marques had sat in the waiting room with a heart rate of 160 beats per minute. The normal rate is 60-100.
Tenuous Condition The doctor sent Marques for a chest X-ray. “She said ‘Wait for it,’ which meant she thought something was wrong. They waited and waited for what seemed like forever. When the X-ray was finally ready they returned to the doctor's office and again waited an eternity. The doctor came back at last, looking like she had been crying. She asked Marques to stay in the room while she and Andrea stepped out to talk. Alone with Andrea, the doctor said, "I have bad news to tell you, but I don't know how to tell you." Andrea replied, "Just tell me." The doctor pointed to the X-ray and said, "Marques has an enlarged heart." Andrea stood there, tears streaming down her face, remembering what she had endured the last six years since her transplant. The reason the doctor took so long to return after examining the X-ray was that she had been in touch with a pediatric cardiologist to decide the next step.
Andrea says, "We had to get ourselves together to tell Marques. Both [the doctor and I] had been crying." When Marques returned Andrea and Marques' doctor told him the problem was his heart. Andrea said, "You have an enlarged heart like Mommy had." He responded, ""No. My heart?" He wanted to know if he had to stay in the hospital. "All three of us stood there just bawling," recalls Andrea. We waited a little longer."
The medical team at Cleveland Clinic Pediatric Hospital decided to do an echocardiogram, which allows physicians to evaluate the structures and pumping capacity of the heart. Afterward Marques was sent to the Intensive Care Unit (ICU). He was given an intravenous feed (IV) of the the blood thinning medication, Heparin due to concern about him forming blood clots since his heart was not pumping effectively and blood pooled in his heart. The medications Dobutamine and Millrione were also given to increase the effectiveness of his heart's pumping mechanism. Marques was on bed rest eight of his ten days in the hospital. It was rough for him and he felt terrible. His condition was tenuous.
Now a Transplant for a Son Initially the doctors considered giving Marques an emergency transplant listing--meaning his name would be placed at the top of the transplant waiting list. But from a purely medical standpoint his condition improved, so this listing was not applicable, even though his life literally depended on him receiving a new heart.
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Marques
was officially diagnosed
with the exact illness with which his mother was diagnosed six years
earlier--Severe Dialated Cardiomyopathy--a potentially fatal
enlargement of the heart. He was slowly weaned off the IV medications and switched to oral medicines
that provided the same treatments.
The
True Culprit: Danon's Disease
Trying
to Keep Life Normal
Andrea remarks, "I've gained a lot of courage from him. I think we're feeding off each other. He has shown such strong character." She continues, "The last month of school before summer vacation was a struggle. It took a couple of weeks before it really sank in that he was very ill. He became a little depressed and felt sorry for himself. Over the summer he got a different perspective without the pressures of school."
Twelve year-old Marques is now in the early months of his first year of middle school. Throughout a typical school day he experiences changing classrooms, liking girls and other adventures that come with being a pre-teen. Andrea wants to keep everything as normal as possible for him. She says, "It's the up and down of the stairs they don't encourage. He is allowed to lift only five to twenty-pounds." Adhering to this restriction, some of Marques' school books stay home while an identical set stays at school. Marques no longer takes gym. "Once he recovers from his heart transplant, however, he will be able to participate in whatever activities or sports he wants," Andrea states.
When Marques first took ill in May 2005, his cardiac output was eighteen percent. The normal cardiac function is fifty to sixty percent. As of the publication of this article, his output was seven percent. Marques' heart is failing him. He was placed on the national transplant list on August 16, 2005. His life depends on him receiving a transplant--soon. His doctors are unsure how long he will last without one. His mother holds on to hope: "We are hoping for a transplant soon. Through faith and prayer I know my son will receive the transplant he so desperately needs" You Can Help
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