After 18-year battle with genetic heart disease, 41-year-old Bengaluru resident gets transplant

For 18 long years, life for a 41-year-old Bengaluru resident was a battle against a failing heart. Diagnosed with a genetically inherited cardiomyopathy in his early twenties, his struggle of nearly two decades ended with a life-saving heart transplant at a private hospital in the city.

A marketing manager by profession, Mohammed Rafi — who hails from Kerala — was diagnosed with Hypertrophic Cardiomyopathy (HCM) at the age of 23, a disease that has been running in his family for ages. From then on, his life took an unexpected turn from being unable to go to gym and or play in cricket tournaments to a daily battle for survival. 

Runs in family

His mother, sister, grandmother, uncle, cousin, and even his young daughter had the same condition. However, it was not until his daughter passed away, at the age of four, that they began to explore the genetic factor.

Doctors at Manipal Hospital Old Airport Road, where the transplant was done, said the patient, who otherwise led an active life, experienced unusual fatigue while playing cricket during an office excursion. However, he ignored it to be a normal consequence of skipping breakfast. Other symptoms of dizziness, breathlessness, and bloating persisted for days.

Worried about this sudden change in his health, he visited a doctor in Kerala, only to discover that he was in the early stages of HCM — a serious, often hereditary condition where the heart muscle becomes abnormally thick.

Although he continued to lead a normal life, the physical toll began to affect his professional and personal life over time. “Because my job included business travel to different places, I had to ask people to help push my bike through traffic. At one point, I realised I could not even lift my laptop,” he said.

Initially treated by Sridhara G, Consultant – Interventional Cardiology and Cardiac Electrophysiology at Manipal Hospital Old Airport Road, for over a decade, he underwent the implantation of an AICD (Automated Implantable Cardioverter Defibrillator). While this intervention gave some relief for a couple of years, his health gradually worsened with symptoms, such as swelling in the body, constant fatigue, and reduced mobility. This was when he was diagnosed with heart failure, with a heart transplantation being the last resort.

Wait for organ donors

The waiting period for a heart transplant was lengthy, with a severe shortage of compatible organ donors. Registered on the transplant list since 2019, it was only three months ago that he finally underwent the transplant, on March 21, 2025.

A team of doctors led by Devananda N.S., HOD and Consultant – Cardiothoracic Vascular Surgery, and Heart and Lung Transplant Surgery, conducted the surgery. After two weeks of hospital stay, he was discharged on  April 5, 2025. His recovery process is still ongoing, with doctors anticipating another 3-4 months for full recovery.

“If families like Mr. Rafi’s are screened early, disease modification to some extent is possible, and other asymptomatic members of the family can also be helped. This is high time we work on creating a national genetic database on such rare cardiac disorders,” said Dr. Devananda.