Precious Moilwa’s health condition necessitated that she hire an oxygen machine at a cost of R2,000 a month.

Moilwa, who’s on a medical aid plan that covers chronic illness, didn’t have to stress much about the costs but wondered how ordinary South Africans suffering from the same condition without medical aid were coping with costs.

This prompted the 32-year-old from Daveyton, Ekurhuleni, to start a foundation to raise funds for those who, like her, also suffer from the condition called pulmonary vascular disease but can’t afford portable oxygen machines.

“I am privileged because I have chronic medical aid… It pains me to realise that as high as my medical bill is every month there’s someone out there without the cover who has to fight the disease without the luxury medical care and equipment I have,” she said.

Moilwa was medically boarded from work last year due to her illness escalating to pulmonary hypertension, she said.

In March, she started a foundation named Mapafu, a Swahili word for lungs.

Among others, the foundation creates awareness on lung diseases and brings hope to people living with the condition similar to hers.

“The government does not offer portable oxygen machines and extra support for patients and, as a result, we raise funds that help with support groups, oxygen refilling money and hope to be able to get sponsored to buy portables, which cost around R40,000 per machine.”

Moilwa said the oxygen cylinder costs R450 to refill every two to three days while the home oxygen machine costs R2,000 to rent monthly.

“I see my doctors two to three times a month and I pay a consultation fee of R950 a month and because I’m in and out of hospital, I’m even behind with a R5,800 payment; but because I’m getting the best care I can live longer.

“I registered the nonprofit organisation last year with my late friend Gontlafetsi Sehako, who passed away last month after living with lung disease for 11 years.”

Moilwa said she had met Sehako on social media after she posted about her condition. “More and more survivors began to post on social media and be comfortable with their oxygen tubes and machines, so we decided to create a support group and we became family.”

Moilwa, also known as “Babes wo Moya”, was diagnosed with intestinal lung disease in 2017 after giving birth to her now two-year-old baby girl.

“It was just four months after birth and I began losing weight drastically; little did I know my life was taking a turn I will never return from.”

Moilwa said she went to several doctors but they could not find the problem.

“I first went to Limned Hospital where doctors thought I had tuberculosis because I was vomiting blood, coughing and losing weight. Some thought it was asthma and I was treated for the wrong illnesses,” said Moilwa.

In 2017, she had to undergo a lung biopsy operation.

“When I woke up from ICU, I was told I have an incurable chronic intestinal lung disease, my lungs and heart were deteriorating, which demanded me to use an oxygen machine for the rest of my life.”

The news left her shattered as the only lasting remedy is if she gets a lung transplant.

“I can drive myself and move around because of the portable machine and it’s my wish for everyone in my condition to have it.”

Pulmonologist at Milpark Hospital Dr Paul Williams said: “Pulmonary vascular disease is the broad term used when referring to pulmonary hypertension. This is a poorly understood condition amongst the general public and it is only recently becoming a subject of more awareness among the medical profession itself.”

Williams said there are many causes of pulmonary hypertension.

Kearabetswe Mahlako dreams of having her own portable oxygen machine

Kearabetswe Mahlako's life stopped after she was diagnosed with a lung and heart disease.

The 22 years old from Rocklands , Bloemfontein in the Free State had to quit school because she could not afford a portable oxygen machine to carry to class daily.

“My  condition is called Bronchiectasis pulmonary hypertension also a lung and heart disease. I was diagnosed in 2010 and my condition got worse until I had to quit school and be attached to an oxygen machine 24 hours,” said Mahlako.

"A portable oxygen machine is all I hope for right now.. It's light in weight and rechargeable, I can go to school and finish my matric." Mahlako said.

She cannot even take a walk down the road or to the mall as she needs to always be close to her oxygen machine to help her with breathing.

Mahlako's home bound machine is attached to an oxygen cylinder which she uses when there is no electricity.

“The oxygen cylinder only lasts 6 hours so when there is no electricity for more than those hours I have to call emergency services and be admitted to the nearest hospital, she said.

Mahlako  said she only  visits a doctor once every six months.

“Ever since I have been with the Mapafu foundation I get support and I can share my problems on our group chats, I hope they get more sponsors so my dream of having a portable, there’s no fun in my life I’m stuck with this big machine all the time,” Mahlako said.