Just 26, he struggles with incurable and life-threatening condition
S'porean talks about battle with incurable and life-threatening condition that has him taking six types of pills daily to stay alive
Take your medicine, and maybe you can prolong your life by five to 10 years, he was told.
Three years ago, Mr Donald Kee, 26, was diagnosed with pulmonary arterial hypertension (PAH), a rare condition in which high pressure occurs in the arteries supplying blood to the lungs. It worsens over time.
In Singapore, one in 15,000 suffers from PAH.
The National Heart Centre Singapore's deputy medical director Lim Soo Teik said PAH appears to be more common in women aged 30 to 50.
"It felt like I struck Toto, but in a bad way," the private school undergraduate told The New Paper in a phone interview on Monday.
Signs of the affliction appeared when Mr Kee was in secondary school. He felt tired often and would be breathless from climbing the stairs, both of which are symptoms of PAH.
His parents thought Mr Kee was simply weak.
"My parents thought it was because I was severely underweight and that I needed nourishment. The staff at traditional Chinese medicine (TCM) shops advised me to take chicken soup or ginseng," said Mr Kee, who is 40kg.
But when his feet started swelling up on the fifth day of Chinese New Year three years ago, Mr Kee's parents realised that their second eldest of four sons needed more than just TCM treatment.
"It was the first time my feet swelled and they looked like pig trotters. It was as if I had soaked my legs in water for a few days. I couldn't even wear slippers," said Mr Kee.
"At first, my parents sent me to the polyclinic for a consultation. The doctor thought it was a dangerous situation and sent me to the A&E (Accident & Emergency) department at Tan Tock Seng Hospital."
There, he was diagnosed with PAH. It was the start of a downward spiral.
"It is like buying a warranty, but it is not definite. The doctor said, 'Maybe you can live for another five or 10 years.' But I don't know if I can go that far.
"I became overcome by emotional and suicidal thoughts. It felt like I was waiting for death to come," Mr Kee said quietly.
For a while, he started spending extravagantly, living every day like it were his last. Nights were spent crying alone in a corner of his room.
"I had no one to talk to. My family is not the type to talk about such things and I didn't want to bother my friends with my problems. I ended up talking to my stuffed toys about how I felt.
"At my lowest, I even asked my parents why they gave birth to me. There were many negative things going on."
It took him 1½ years to come to terms with the condition and conscientiously take six types of medicine three times a day to thin his blood, lower the pressure in his blood vessels and keep his heart rate stable.
With medical support from the National University Heart Centre Singapore, where Mr Kee was later transferred to, most of his $3,000 to $4,000 medicine cost is subsidised. So he pays less than $500 each month for the drugs.
His dosages of heart and lung medicine were recently increased because he was faring poorly in the six-minute walk test. The test measures exercise tolerance in chronic respiratory disease and heart failure.
Three years ago, he could walk 200m to 450m. Now, he can manage only 100m before he starts panting and needs a rest.
Mr Kee knows his condition is worsening. "I have no more plans for the future. I know I can't foresee the disease progression, so I'll just take one step at a time.
"If I am not feeling good today, I'll tell myself that tomorrow will be a better day," he said.
ABOUT PULMONARY ARTERIAL HYPERTENSION
WHAT IS IT?
Pulmonary arterial hypertension (PAH) is a rare disease that results in high pressure in the arteries supplying blood to the lungs.
It occurs when the pulmonary arteries thicken or grow rigid, making blood flow more difficult.
Over time, the heart muscle weakens.
Also, clots can form and block part of the blood vessels' flow.
As the pressure builds, the lower right chamber (right ventricle) of the heart must work harder to pump blood through the lungs. Because of this, the heart muscle weakens and eventually fails.
WHO DOES IT AFFECT?
In Singapore, one in 15,000 suffers from the condition. About 80 per cent are women, with an average age of 50 years old.
WHAT ARE THE SYMPTOMS?
Symptoms include breathlessness (especially on exertion), tiredness, swollen ankles and legs, and chest pain during physical activity.
CAN IT BE TREATED?
There is no cure for PAH, but there are drugs available to control the progression of the disease. If left untreated, PAH may become life-threatening when the pressure in the lungs rises to dangerously high levels.
WHAT SHOULD PATIENTS LOOK OUT FOR?
- Be as active as your body allows. Activities such as walking or swimming are encouraged.
- Do not engage in competitive sports or isometric exercises such as planks.
- Take your yearly flu vaccination and pneumococcal vaccination every five years to prevent severe lung infections. Seek medical attention early for respiratory tract infections.
- If you travel, check that the aircraft is pressurised and has supplemental oxygen available if you should need it.
- Female patients with PAH must not get pregnant as pregnancy increases the risk of death to both the mother and the foetus.
New low-cost drug now available
Before 2000, there were no low-cost drugs for patients with pulmonary arterial hypertension (PAH).
The rare condition strikes one in 15,000 people here. (See report on facing page.)
Associate Professor James Yip, a senior consultant at the National University Heart Centre Singapore (NUHCS), recalls watching helplessly as patients died of PAH because they could not afford the treatment option of $250,000 a year.
Common and non-specific symptoms like breathlessness often result in delayed treatment - a challenge that remains in diagnosing the condition, Adjunct Associate Professor Lim Soo Teik, the deputy medical director of National Heart Centre Singapore (NCHS), said.
Later, PAH patients relied on erectile dysfunction drugs, such as Viagra, which increase the size of blood vessels and lower resistance to blood flow in the arterial walls of the lungs and penis.
Now, they have a new option - Opsumit, which costs $3,000 to $4,500 each month. Approved by the Health Sciences Authority in July, it helps to relieve symptoms in PAH patients by suppressing the harmful effects of endothelin, a hormone that controls blood flow and cell growth in blood vessels.
The study on Opsumit, conducted from 2009 to 2012, evaluated the safety and efficacy of the drug in 742 patients from almost 40 countries. Among them, 65 were Asians and 15 were Singaporean patients from NUHCS and NCHS.
"Opsumit is found to reduce actual disease progression and hospitalisations even when taken in combination with other therapies," Prof Yip said.