“By this time next year, if the medical forecasts are correct, I will probably be dead. Another casualty of a fatal illness that most people have never heard of,” said Ashley Pondai Savanhu in a heart-rending post that attracted a lot of comments on Facebook.
“When I was told two years ago that I had fibrotic lung disease, I had never heard of it, nor had any of my friends.Yet it claims more lives in the world than prostate cancer and nearly as many as breast cancer.”
Fibrotic lung disease, or pulmonary fibrosis, is a serious lung disease that causes lung scarring and thickening. The disease affects the thin walls of air sacs that are located in the lungs.
Over time, the air sacs become scarred, thick and stiff, thereby affecting their function to send oxygen to other parts of the body. This makes it difficult for one to breathe.
There are over 200 different types of pulmonary fibrosis and for most of them, there is no known cause or cure.
“So why have most people never heard of it? There are no TV ad campaigns, road races, colour-coded ribbons, or ice-bucket challenges to raise awareness and fundraise for a cure,” Savanhu said.
“Fibrotic lung disease, the condition from which I suffer, has been described by Michael J. Stephen in his 2021 book ‘Breath Taking’ as the ‘most frustrating and disheartening of all the diseases in pulmonary medicine’.”
Savanhu, a film producer who started his career in Zimbabwe before migrating to South Africa, where he made a name making productions for big brands including SABC, said he made the social media post not to generate sympathy, but “to raise awareness and fundraise for a cure so that next patients will be saved”.
“It is an inexorably progressive disease with rapid decline in lung function. I saw death coming at the worst time one could imagine. It was very unpleasant to tell you the truth,” he said.
“I am a slim person, but after my diagnosis I lost a lot of weight. I was scared to hell, actually which is perhaps a natural feeling, I guess.
“When you know you are dying soon you may feel more than ever the need to live for each day. It’s important to decide what to do with the time you have left.”
Savanhu realised that something was not well after collapsing twice while directing a film production shoot in Johannesburg.
He endured to the end of the production and his friends took him to Edenvale Medical Centre in South Africa after work having realised that he was not well.
After many tests from a team of doctors and living on life support for a number of days, Savanhu was later advised that he had been diagnosed with pulmonary fibrosis.
“I didn’t know much about the disease then, all I wanted was to get off life support and continue making films,” he said.
“I had just established my film production company and really wanted to make a name for myself.”
After some online research, Savanhu learnt a lot about pulmonary fibrosis and had peers across the globe share their experiences with him.
Not an easy road
“I thank God I learnt a lot about the disease, even from personal experience I began to see things that I was reacting to and avoiding them. It was not easy though,” he said.
“I failed to come to terms with reality, depression came in. I’m happy that close family and friends supported me.
“One friend took me on a filming project outside Gauteng province, that is when I realised that being with a camera and doing what I love was very therapeutic.”
Savanhu realised that he has to make the most of his time by creating content, videos and TV programmes and doing good to people and in the house of the Lord.
“When you are in pain you think of death. Those thoughts eat you away. But I thank God I am here and alive,” he said.
“Everyone dies, but to be told that by so and so a date you will be gone, that’s when depression kicks in. But I’m not going anywhere, I’m here.
“Each day you just want to live, be healthy and be with the people that you love.
“But it hurts, because I know I will be leaving them soon. Sometimes I end up pushing people away. I don’t even know what I will be doing.”
Living well with pulmonary fibrosis
Lung damage due to pulmonary fibrosis is irreversible, however, medical experts advise that one has to take their prescribed medicines, undertake oxygen therapy, eat right, exercise, avoid stress and continue to protect the lungs.
“I realised that I have to avoid perfumes, crowds, stay warm and be close to a medical centre where I can receive oxygen therapy when I need it,” said Savanhu.
Oxygen therapy gives the body oxygen which helps one to breathe better. It also increases energy. Also, exercise helps one to feel better since it improves breathing.
Causes of pulmonary fibrosis
While there is no known cause, risk factors such as smoking, old-age, working around fumes and/or dust and other medical conditions like rheumatoid arthritis may lead to pulmonary fibrosis.
The disease can also be passed on genetically although these cases are very rare.
This is why this came as a shock to Savanhu, who at 28, was diagnosed with the disease with no past smoking experience or working around fumes.
What is it really?
In simple terms, Alveoli orthe air sacs located in our lungs develop scars and over time these scars thicken. When this happens it becomes difficult for these air sacs to get oxygen into the bloodstream when one inhales.
Medication slows down the scars development and preserves the lungs. Routine tasks will get tiring over time, because the disease progresses over time and results in death.
Persistent dry cough, short and shallow breathing, fatigue regardless of how long one sleeps, and shortness of breathe during and after exercise as well as weight loss are the common symptoms of pulmonary fibrosis. One feels like they cannot catch their breath or fail to breathe deeply.
“As Nancy LaMottaptly puts it in the song titled We live on borrowed time, “no one can be sure when the loan will finally come due,” Savanhu said.
“But, I’m loving all of mine, I know what time is for. I have borrowed it, so I can spend it with you.”
We have time and let us make the most of it for tomorrow is not guaranteed to anyone.