Mr Amin set up the pulmonary hypertension (PH) Patient Support Group, Pulmonary Hypertension Singapore, in 2006.
Having blue skin may look cool for the characters in science-fiction animated film Avatar. But for people with high blood pressure in the lungs, a blue-tinged complexion spells serious trouble.
The condition, called pulmonary hypertension (PH), can result in a lack of oxygen, which turns their lips or skin blue.
At the age of 39, Mr Mohd Amin Haji Mubaruk was diagnosed with a type of pulmonary hypertension in 2003, after complaining of chest pain. As a result of the increased blood pressure in the small arteries of his lungs (pulmonary arteries), he felt breathless after climbing just two to three flights of stairs. Even walking on flat ground for a few metres made him "desperate for air", he said. The discomfort was made worse by swelling in his legs and abdomen.
Shortly after his diagnosis, Mr Amin wondered if there were others like him, and set up the PH Patient Support Group in 2006.
A support group can be helpful, given that with good medical therapy, more than eight in 10 are expected to live for over five years.
Without treatment, only three in 10 pulmonary arterial hypertension patients like him will live up to five years, showed a study published in April.
In the early years of the support group, Mr Amin had to single-handedly organise health talks, which attracted up to 30 patients and their caregivers each time.
Yet he could organise them only annually or every two years.
Now, the 51-year-old, who is unemployed, is one of five committee members who have their sights on growing the group and expanding its activities. The members are in the midst of registering the group with the Accounting and Corporate Regulatory Authority to be a public company limited by guarantee, which means it will be a non- profit organisation that exists in its own right in the eyes of the law.
As a registered entity which will be called Pulmonary Hypertension Singapore, the group, Mr Amin said, will be able to organise events to raise funds from non-members and even corporations, solicit online donations and work directly with pharmaceutical firms.
Their outreach efforts will include a website, presence on social media platforms and a task force to reach out to newly diagnosed patients, said Mr David Lim, a 33-year-old business development manager who is the only non-patient on the committee.
These patients can gain insight from long-time sufferers of the condition, such as Mr Amin, who has had the condition for 12 years.
Today, he relies on up to 10 types of medication to reduce the workload of his heart and improve blood flow in his lung vessels. He has two- hour-long exercise sessions at the hospital, thrice a week, with a physiotherapist. He knows how keeping fit has helped him to breathe better, and he has urged a younger patient, who used to require supplemental oxygen, to do likewise.
Mr Lim said the group also has plans to build a patient database. This way, it can organise activities more regularly, he added.
Lifestyle changes to cope with pulmonary hypertension
People with pulmonary hypertension might need to modify their living space and daily activities when symptoms worsen. This is because the high blood pressure in their lungs can strain the heart.
Some practical tips include:
- Finding resources to ease daily and weekly household chores;
- Limiting climbing of stairs;
- Modifying bathrooms by fitting easily reachable faucets and shower racks;
- Rearranging kitchen tools for easy access; and
- Arranging for childcare and handicapped parking.
They should also:
- Quit smoking to prevent their condition from worsening.
- Adopt an active lifestyle, but realise that their condition can cause them to feel breathless even when they do light exercise. As over-exertion can be detrimental for them, the rule of thumb is to stop their activities immediately when they experience symptoms such as giddiness, fatigue, chest tightness, palpitations or severe breathlessness.
They are encouraged to enrol in the hospital's pulmonary rehabilitation programme, where patients can exercise safely under the care of qualified professionals.
- Review travel plans with their doctors. Air travel and high-altitude locations expose them to lower blood oxygen levels, so they are advised to discuss with their doctors the need for supplemental oxygen and refills. They should obtain a doctor's letter stating their list of medications and any special care - for example, oxygen supply - to clear security checkpoints. If possible, they should get the name of a doctor at the travel destination who is familiar with treating pulmonary hypertension. During the trip, they are also advised to avoid sitting for long periods, and to stand up and walk around. This helps prevent deep venous thrombosis.
- Consult doctors before taking over-the-counter medication, which could interact with their existing drugs.
- Female patients are advised to avoid getting pregnant. Up to 38 per cent of pregnant women with pulmonary hypertension could run into complications, which might be fatal. In addition, many of their medications are harmful to the foetu
Get their yearly flu vaccination and pneumococcal vaccinations every five years to prevent severe lung infections.
- Practise good dental hygiene by brushing and flossing their teeth regularly and going for yearly dental checks. Poor dental care could result in infections, which might worsen their condition.
Source: Adjunct Associate Professor Lim Soo Teik, deputy medical director and senior consultant at the department of cardiology at National Heart Centre Singapore; Adjunct Assistant Professor Kenneth Guo, consultant at the department of cardiology at National Heart Centre Singapore