Singapore woman with rare heart condition raising $3.2 million for heart and lung transplant in US

A Singapore woman diagnosed with a rare heart condition is hoping to travel to the United States to get a heart and lung transplant.

A campaign on online donation platform Give Asia has been set up for Amanda Lim Xuan, 30, to raise an estimated $3.15 million for the surgery.

In a description on the site, Lim shared that she was diagnosed with Primary Pulmonary Hypertension (PPH) in 2017, a condition shared by "15 people in a million". She inherited the disease from her father and her older sister also died from the condition.

According to an article in The Lancet, PPH is characterised by raised blood pressure of the pulmonary artery, which leads from the heart to the lungs, "in the absence of secondary causes". Without treatment, the disease progresses and leads to "right heart failure and death" in most cases.

Lim wrote that, after various drug trials, her last option in Aug 2023 was to be started on a medication named Veletri, which initially worked but "soon grew ineffective while causing numerous side effects", leaving a heart and lung transplant as her only option.

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However, following numerous tests at the Singapore General Hospital (SGH), she was told she could not be placed on the waitlist for the surgery. Another trial drug for PPH, Sotatercept, is also available overseas but not yet in Singapore, Lim added.

Lim was accepted by the University of California San Diego for an appointment in early July to assess her transplant suitability, but the costs of transportation, the transplant and the medications she has to be on in the meantime pose a challenge.

She wrote that she is wheelchair-bound and needs to be on "constant oxygen support" and initially planned to take an air ambulance to San Diego which would cost $375,000. A cheaper alternative was offered by Singapore Airlines, but it would still require her to travel by Business Class and book three additional seats for her oxygen equipment.

Lim also shared that the estimated medical costs for the heart and lung transplant are $3 million "to be paid upfront". She will also be on Sotatercept, which costs $19,000 per jab every three weeks while she waits for a donor, which may take two to three months. 

As of writing, the campaign has raised over $364,000, including more than $236,000 raised offline.

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drimac@asiaone.com