HIGH SPRINGS ‒ It has been a long journey—one that Clarence Hope Sr. had never imagined. A truck driver by trade, a husband, and a father to three young children, Hope had no inkling of what was to come and how it would change his life. But in January 2010 he began having health problems including trouble breathing and extreme fatigue causing multiple trips to the Emergency Room (ER).
Over the next 12 years Hope would go through a series of tests, misdiagnosis, and multiple hospital stays. At one point he was told by hospital doctors that he had only days to live. But thanks to the UF Health Heart and Vascular Care unit, High Springs resident Hope has a new lease on life after receiving a heart transplant in October 2022.
When his health problems first appeared in 2010, Hope was initially diagnosed as having pneumonia, but the problems persisted and the symptoms worsened including swelling of the legs, dizziness, rapid heartbeats, chest discomfort and issues with internal organs.
Continued tests and hospital stays were inconclusive and he was diagnosed with a variety of ailments with no conclusive proof and no relief. At one point they claimed it was caused by STD's or AIDS, which Hope knew was wrong.
Finally, after a year of tests and frustrations, another doctor said the hospital had been reading the signs wrong and that the issue was his heart, a condition termed cardiomyopathy, which is a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body.
Ultimately, cardiomyopathy can lead to heart failure and death. At first Hope was being treated with medications. Later, his medical team put in a pacemaker, a small device that's surgically implanted in the chest to help control the heartbeat and to prevent the heart from beating too slowly.
For a while, things seem to improve. Hope’s primary care physician, Doctor Nasir Ahmed of High Springs Pediatric and Primary Care, monitored his condition in between hospital stays and tests. Hope was able to return to work part time and do activities with his family, watching the kids while his wife Marion worked.
But this came to an end one day when Hope was talking to friends while sitting on his riding lawnmower. Suddenly, the pacemaker seized up, sending a shock through his body and knocking him unconscious onto the ground.
After another extended hospital stay and repairs to the pacemaker, Hope developed gout, which was treated with steroids, but other issues complicated the problem. During another trip to the ER, his blood sugar registered high at 138 although Hope had no history of diabetes. He developed gall bladder problems due to his enlarged heart, which was pressing against the gallbladder. Also, his other organs were being affected and beginning to fail.
In 2017, due to gall bladder issues, doctors installed a biliary drain. Also called a biliary stint, it is a thin, hollow, flexible tube with several small holes along the sides that is used when too much bile collects in the bile ducts. If something is blocking the bile duct, bile can back up into the liver and start causing multiple organ failures.
As time passed, his condition did not improve and actually worsened. As 2018 began, Hope received devastating news. Doctors at the hospital said he was septic and nothing could be done. They suggested he gather his family and friends to say goodbye and he would probably not last the weekend.
“That news was gut wrenching,” Hope said. “I was suddenly facing my own mortality and would never have a chance to see my children grow.” Not wanting to die in the hospital, Hope’s wife took him home to be with family.
One of his first stops to say goodbye was to his physician, Nasir Ahmed, who had monitored Hope’s health for eight years. Ahmed refused to accept the hospital’s diagnosis and was dismayed that they couldn’t diagnose the problem. Ahmed reached out to a friend, Mustafa Ahmed, a leading cardiology surgeon at Shands.
The following day, Hope received a call from the surgeon stating that if he could go to Shands ER the following day, his team would reevaluate his situation and admit him to Shands’ cardiology unit. The next day after that, Hope awoke in the hospital to find himself in a room full of doctors. The lead doctor asked Hope if he wanted to live. When Hope replied, “of course,” the doctor fist bumped Hope and told his team, “Let’s go guys, we got work to do.”
With Hope's heart only working at two percent, doctors installed an intra-aortic balloon pump (IABP), which is a therapeutic device that helps the heart pump more blood as a temporary fix. Their realization was that Hope’s heart had to be replaced, but unfortunately there were no donor hearts available.
To keep Hope alive, a left ventricular assist device (LVAD) was surgically installed until a heart could become available. A LAVD is a pump that for patients who have reached end-stage heart failure. The battery-operated mechanical pump helps the left ventricle pump blood to the rest of the body to keep the patient alive. During this time in 2018, Hope spent almost five months in the hospital.
It would be almost four years of being on the wait list for a heart transplant, when on Oct. 2, 2022, Hope received a call that a transplant was available. Within an hour he was at Shands with the operating room ready.
Within three weeks from the surgery, Hope is up with no problems and no signs of rejection of the new heart. Marion Hope expressed their gratitude to all the medical staff at Shands and their primary care physician who refused to give up on him.
“We are also eternally grateful to the family that provided the donor heart,” said Marion Hope. “We know it was a great loss to their family, but they provided life to another family.”
Marion Hope said that the rules of donorship prevent both the donor and the recipient from knowing each other’s identity for a year. “We can correspond with letters and they can decide after the year whether to establish contact with us,” said Marion Hope. “We hope they will so we can tell them how much this meant to our family”.
Now, Clarence Hope, Sr., has a new lease on life and the future with his wife and children that he dreamed of.
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