Doctors told me I would lose my life to rheumatic heart disease in 15 days

Caroline Wakanyi remembers the day her body gave up on her. What had started as breathlessness on short walks had grown into a constant struggle. Climbing a flight of stairs felt like scaling a mountain. Even talking for long stretches left her chest tight and her voice thin.

“I could not do the simplest things without feeling tired,” she recalls. “I thought it was just fatigue at first, but then my heart started racing and I could not catch my breath. That is when I knew something was wrong.”

For years, Caroline had lived with symptoms she did not fully understand. Sore throats in childhood were brushed off as ordinary infections. Nobody imagined they could quietly damage her heart, but by her late 20s, the hidden damage had caught up with her.

Her family watched in alarm as she grew weaker. Daily routines such as cooking, washing or even laughing with her nieces and nephews became impossible. She found herself lying in bed most of the day, wondering why her health was slipping away so quickly. Doctors would later confirm that two of her valves were failing. Without urgent surgery, her life was hanging by a thread.

Caroline remembers when her body betrayed her. She was in Kiambu when a wave of chest pain left her vomiting and wheezing through the night. “I could hardly breathe,” she recalls. “It was like someone was pressing on my chest. I knew this was different from anything I had felt before.”

Her sister, Evalyne Waithera, had been by her side through much of the journey. She saw how even ordinary moments turned into battles. “She was ever tired,” Evalyne says. “Even a short walk left her breathless. Having a sick person, you become more sick than the patient. We were all drained watching her struggle.”

The diagnosis of rheumatic heart disease came as a shock to the family. With no history of heart problems, the news felt like a thunderbolt. They began praying together every evening, asking for strength and healing. “We never imagined something like this could happen in our family,” Evalyne says. “It felt like we were walking in the dark.”

Then came the bluntest warning of all. Doctors told Caroline that without urgent surgery she had only 15 days left to live. “It felt like a death sentence,” she says. “I cried the whole night. My family prayed harder than ever, but I could see the fear in their eyes.”

Caroline’s journey soon led her to Kenyatta National Hospital (KNH), the country’s main referral centre for specialised care. Her family believed the long wait for answers was over. Instead, it marked the start of another painful chapter. There, she joined the long queue of patients waiting for open-heart surgery. The family recalls how the waiting dragged on for close to two years, punctuated by endless clinic visits, new tests and repeated consultations.

“For us, that place was hell,” her sister Evalyne says. “She was ever tired, even a short walk left her breathless. We begged, we tried connections, even thought of paying to skip the queue. Nothing worked. Every week we still went back, hoping she would be called in.”

The emotional toll was heavy, but the financial burden proved just as crushing. Each clinic visit cost more than Sh5,000, with additional expenses for lab work and medication. “Having a sick person, you become more sick than the patient,” Evalyne recalls. When doctors estimated the surgery bill at Sh1.2 million, the family turned to friends, church members and even strangers online.

In the end, they managed to raise only about Sh400,000, not even half the target.

Waiting lists at KNH often stretch beyond 12 months, while costs at private hospitals remain far out of reach for most families.

The Ministry of Health acknowledges the backlog, citing both limited surgical capacity and the high cost of consumables as barriers to timely care. Fewer than 500 cardiac surgeries are carried out in the public sector each year, while thousands remain on waiting lists.

After months of despair, Caroline’s family turned to Aga Khan University Hospital (AKUH), one of the few centres in Kenya equipped to handle complex cardiac surgeries. The referral did not come through official channels.

During one of her visits to KNH, Caroline met a caregiver who had accompanied another patient. In the course of their conversation, the man mentioned that AKUH had a welfare programme that could sometimes support patients who could not afford surgery. He even shared a contact who might help guide Caroline through the process.

It was a small thread of hope, and Caroline’s family clung to it. At AKUH they met Dr Andrew Duncan, a cardiologist whose calm manner immediately reassured them. “He listened, he explained, and for the first time we felt someone truly understood what Caroline was going through,” says Evalyne.

Caroline was also introduced to the hospital’s welfare team, which helps a limited number of patients each year access financial support. “Without that welfare programme, we would never have managed. It was a lifeline,” Evalyne says.

According to hospital records, the institution performs more than 120 open-heart surgeries each year, making it one of the busiest centres in East Africa.

When surgery is delayed, patients often arrive in crisis, making the procedures far riskier. Caroline was among the fortunate few who found a way through.

On the day of surgery, Caroline was wheeled into theatre for a mitral valve replacement. Her aortic valve also showed damage, but the mitral was the most urgent. “Her valves had become rigid and were no longer working. Surgery was the only option,” explains Peter Ogutu, a cardiac surgeon and one of the lead doctors.

The operation began smoothly. Hours later, however, Caroline’s heart fell into a dangerous rhythm disturbance. “Her heart had zero function. We tried drugs, we tried electrical correction, nothing worked. We had to reopen her chest in the ICU and do direct cardiac massage,” Dr Ogutu recalls.

In that desperate moment, the team decided to connect her to an ECMO (Extracorporeal Membrane Oxygenation) machine, a device that temporarily takes over the work of the heart and lungs. “It was the last card we had to play,” he says. For nearly 72 hours her heart was silent, and only the machine kept her alive.

Then, after almost two days, the impossible happened. Caroline’s heart began to beat again. She would remain unconscious for weeks, but the turning point had come. “The day she woke up, it felt like a miracle,” Evalyne says.

Caroline’s slow climb back to life began in the intensive care unit (ICU), where she spent weeks under constant monitoring.

When she finally opened her eyes, Caroline weighed barely 26 kilogrammess. Months later, her transformation was striking. She had gained back her strength, her weight rising to 41 kilogrammes.

The wheezing that once betrayed her every breath was gone. She could now walk short distances, laugh without coughing and even take on small chores.

“After cardiac surgery, the body is extremely vulnerable. Specialised monitoring allows us to detect complications immediately, sometimes before the patient even shows symptoms. Without that level of care, she would not have made it,” he says.

When she finally opened her eyes, Caroline weighed barely 26 kilograms. Months later, her transformation was striking. She had gained back her strength, her weight rising to 41 kilograms. The wheezing that once betrayed her every breath was gone. She could now walk short distances, laugh without coughing and even take on small chores.

Her sister Evalyne marvels at the change. “Now she can talk on the phone for hours. She can even jump a little. Before, just lifting herself from bed felt impossible. It is like watching someone come back to life.”

Research in East Africa shows that patients who undergo valve surgery often return to school, work and family life, provided they can keep up with follow-up care and medication. Caroline’s story is a vivid reminder of what timely treatment can restore.

Caroline’s story is deeply personal, but it reflects a larger crisis. According to the World Health Organisation, more than 40 million people worldwide live with rheumatic heart disease, and nearly 300,000 die each year. Most of these deaths occur in low- and middle-income countries where early diagnosis and surgery are often out of reach.

In Africa, the disease remains the leading cause of acquired heart disease in children and young adults. The Pan-African Society of Cardiology estimates that rheumatic heart disease accounts for up to a third of all cardiac cases on the continent. “The tragedy is that rheumatic heart disease is preventable, yet it remains a leading killer of the young in Africa,” says Prof Elijah Ogola, a cardiologist and member of the World Heart Federation.

Kenya faces a similar burden. Studies suggest that thousands of children suffer recurring throat infections that, if untreated, can progress silently to heart damage. Ministry of Health data shows that only a small fraction of those who eventually require surgery ever receive it. “In Kenya, we are still diagnosing patients late, often when the valves are already destroyed,” Prof Ogola explains. “With timely antibiotics, most of these cases could be avoided.”

The Ministry of Health and Kenya Cardiac Society have developed national guidelines on RHD, outlining prevention, diagnosis and long-term care. These guidelines urge health workers to treat sore throats promptly with penicillin and to monitor children at risk. Expanding capacity for surgery at Kenyatta National Hospital and other centres remains part of the long-term goal, but experts say prevention is the most cost-effective path.

Caroline’s survival was not only about medicine but also about the power of faith and togetherness. “Family support is key,” says her sister Evalyne. “It can make the difference between life and death. Even when doctors told us to prepare for the worst, we stood by her, prayed and encouraged each other.”

Caroline herself speaks with quiet gratitude. She remembers the fear of breathlessness, the endless hospital visits and the shock of being told she had only 15 days to live. “I thank God for giving me another chance. I thank my doctors, my family and everyone who supported me. To others going through the same, do not give up. There is hope.”

Today, she is rebuilding her life, step by step. From weighing only 26 kilograms to walking and laughing again at 41 kilograms, her journey shows what is possible when treatment and support come together.