Kamil Hamidullah, a double lung transplant recipient with a history of familial pulmonary hypertension, interviewed by the BirGün online magazine

“Don’t Underestimate It: Pulmonary Hypertension Can Be Fatal”. Published on May 1, 2023, in BirGün, this interview sheds light on the critical nature of pulmonary hypertension, featuring Kamil Hamidullah, a patient from Turkey. Kamil, also serving as the President of the Turkish pulmonary hypertension association PAHSSc, emphasizes the severity of this condition and the urgent need for awareness.

Kamil, born in 1974, was 17 years old when he tragically lost his only brother, who was 28, within three years of his diagnosis of pulmonary hypertension, due to lack of treatments. Kamil himself was diagnosed with the same condition at the age of 22, in 1996. A year later Kamil was the first patient in Turkey be treated with epoprostenol intravenous therapy. His condition worsened and, in 2006, it was decided that he needed a lung transplant. It took time to find a center in abroad for lung transplantation, which was not available in Turkey at that moment, get social security approval, wait for an organ, etc. He underwent a life-changing double lung transplant in 2009.

According to Kamil, this disease is often misunderstood due to its lack of specific symptoms, making it difficult to gauge its severity in the early stages. He refers to it as an “invisible disability,” as it doesn’t manifest visibly. Kamil was devastated to learn that pulmonary arterial hypertension has a worse prognosis than even the most severe types of cancer. He also highlights the misleading nature of the term “hypertension,” which can cause relatives of patients to underestimate the gravity of the disease. Living with only half the breath capacity is an indescribable struggle, Kamil explains. He recalls being unable to climb a few flights of stairs, lacking the strength and breath to even get out of bed and walk a short distance. Thanks to his organ donor, Kamil received his new lungs in 2009, allowing him to embrace life to the fullest. He deeply appreciates his donor’s gift with every breath he takes and encourages everyone to consider organ donation.

In the same article for BirGün Prof. Dr. Mehmet Akbulut, Chairman of the Pulmonary Vascular and Adult Congenital Heart Diseases Working Group of the Turkish Society of Cardiology, sheds light on pulmonary hypertension, describing it as high blood pressure in the pulmonary vessels. He emphasises that it can arise from various diseases, particularly cardiovascular and respiratory conditions. Prof. Dr. Akbulut stresses that early diagnosis and treatment of pulmonary hypertension greatly enhance both the quality of life and survival rates. Today, there are numerous treatment options available, including medication and other approaches such as surgery, balloon pulmonary angioplasty, denervation, and stem cell therapy, which cater to each specific form of pulmonary hypertension. These treatments significantly improve the overall quality of life and survival rates. However, despite these advancements, desired outcomes may not always be achieved. In such cases, lung or lung-heart transplantation becomes the only viable solution. Hence, it is crucial to develop realistic and enduring policies, alongside raising social awareness and fostering encouragement, to promote organ donation.

Beware of these symptoms, says Prof. Dr. Akbulut:

  • Shortness of breath
  • Fatigue
  • Coughing up blood
  • Abdominal bloating and nausea with exercise
  • Edema (weight gain)
  • Dizziness – Fainting
  • Chest pain
  • Hoarseness and lower respiratory tract infections
  • Bruising of the lips and fingertips

Commentary by Pisana Ferrari:

Kamil’s interview serves as a call to action, urging readers to familiarise themselves with the signs and symptoms of pulmonary hypertension and seek medical attention promptly. Kamil’s personal story is a testament to the importance of early diagnosis, proper treatment, and ongoing support. His courage and determination inspire others to join the cause, raising awareness, and ultimately saving lives.

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