From Farms to Factories: Patient Journey to Pulmonary Fibrosis
An interview with Rosemary, 81
September 3rd, 2024
Rosemary’s health journey has been anything but straightforward. After enduring three years of painful breathing tests with countless visits to her GP and specialist consultants, she was finally given a diagnosis 12 months later—a name that escaped her when her granddaughter asked. Having been left in the dark without a diagnosis her condition was ultimately revealed during an emergency hospital visit where she was placed on oxygen to enable basic breathing. The consultant broke the news that she had scarring on her lungs, leading to a diagnosis of pulmonary fibrosis. For Rosemary, this explained why she had been struggling to breathe for years, why persistent coughs refused to go away, and why the once simple walk to the local shop had become a near-impossible task. At 81, Rosemary knew she was getting older, but deep down, she felt that what she was experiencing was more than just the natural effects of aging.
Rosemary's history with hospitals was extensive. She had faced breast cancer not once, but twice, enduring the grueling treatments that followed. A decade ago, she underwent a triple bypass surgery—a major procedure that she faced with courage. Yet, despite these significant health challenges, Rosemary had always prided herself on leading a healthy lifestyle. She never smoked, never drank alcohol, and had always tried to take care of herself. This made the pulmonary fibrosis diagnosis all the more shocking to her family. It wasn’t until they started looking into the possible causes that the mystery began to unravel.
The answer seemed to lie in her past. Rosemary grew up on a farm, surrounded by rustic beauty but also by potential hazards. She was regularly exposed to animal fur, crops, and the constant coal fires that heated her home. These were elements of a life that, at the time, seemed perfectly normal and harmless. But over the years, they may have laid the groundwork for the issues she was now facing.
As Rosemary transitioned into adulthood, she spent years working in various factories, primarily in footwear being from Northampton which is famous for footwear. In those days, safety regulations weren’t as stringent, and she often found herself in environments filled with dust, fumes, and other airborne particles. At the time, these exposures seemed menial, with no immediate illnesses surfacing, and life went on. It wasn't until much later in life that the hidden toll of these environments began to manifest in the form of pulmonary fibrosis. The particles she had inhaled decades ago had settled into her lungs, slowly causing damage over the years, finally making themselves known when it was almost too late.
Despite the difficulties, Rosemary's spirit remains unbroken. Even with her oxygen tank now a constant, she has managed to keep a positive outlook on life. Her days in the respiratory ward are filled with laughter and jokes, with Rosemary becoming a favorite among the staff, always willing to be a test subject for the junior doctors learning their craft. She humorously refers to her arms as "pin cushions," given how frequently they are used for various tests and procedures.
However, the breathing tests are another story. Rosemary finds them particularly challenging. “It’s hard enough to breathe normally when it hurts this much,” she explains, “but trying to do shallow breathing with a mask on it’s almost impossible.” The conventional methods are invasive and painful, making an already difficult situation even more stressful.
When Rosemary was introduced to electronRx’s purpleDx product, a noninvasive and innovative way to monitor lung function using a smartphone, her interest was piqued. "Using a phone instead is a great idea," she remarked. "The existing breathing tests are very painful. I would love to use this instead." The simplicity and comfort of the device stood in stark contrast to the harsh realities of her current testing experiences.
As she awaits the necessary changes to her home care setup to accommodate her new life on permanent oxygen, Rosemary’s focus remains on staying positive. She is determined to adapt to this new stage of life and is keen to do anything she can to help others facing similar challenges. Her willingness to participate in new medical innovations like purpleDx reflects her desire to not only improve her own quality of life but also to contribute to advancements that could benefit others with pulmonary fibrosis.
The lingering question for Rosemary and her family is: what if she had been diagnosed earlier? Would it have changed her prognosis? Could she have avoided relying on oxygen for the rest of her life? They wonder why more resources and funding aren't dedicated to earlier detection and prevention of pulmonary fibrosis. If she had been diagnosed three years ago, would they have had more years together?
Pulmonary fibrosis (PF) is a progressive lung disease characterised by fibrosis or scarring of the lung tissue. As the disease progresses the build-up of fibrotic tissue causes the lungs to stiffen, limiting their ability to expand and contract, resulting in declines in lung function. By far the most common type of PF is idiopathic pulmonary fibrosis (IPF), which describes PF cases for which no cause has been established. According to recent estimates, there may be around 30,000 people in the UK currently living with IPF [1].
Some common symptoms of IPF include a dry persistent cough, shortness of breath, fatigue, loss of appetite, unexplained weight loss and clubbing of the fingers and toes. IPF patients may also experience sudden worsening of respiratory symptoms, termed acute exacerbations, from which many never fully recover. Additionally, IPF patients are at an increased risk of complications including infections, heart failure and pulmonary hypertension. As a result of these factors, the average life expectancy following a diagnosis of IPF is 2 to 5 years [2]. More information about pulmonary fibrosis can be found here.
To learn more about purpleDx, and how you can make a real difference to the life of those suffering with pulmonary conditions like Rosemary, book a demo.
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References
[1] The British Thoracic Society. BTS ILD Registry Annual Report 2020: a summary of the UK IPF Registry for the general public. 2020.
[2] Ley B, Collard HR, King TE. Clinical Course and Prediction of Survival in Idiopathic Pulmonary Fibrosis. Am J Respir Crit Care Med. 2011;183:431–440.