I came across this article, which describes the successful lung transplants for two sisters who have suffered from Pulmonary Fibrosis for ten years. Both made it onto the list to receive a new lung, which is the only long-term treatment for this disease. Without a transplant, both sisters had little time left. This disease is marked by scarring of the lungs, decline of lung function, and often a sudden and rapid decline towards complete inability to breathe.
This disease, which has no known cause, kills more people each year than breast cancer. Yet it has no official national registry, and little coordinated research to determine a cause or develop a viable treatment or cure. Patients are often misdiagnosed as asthmatic until the disease is advanced, and often languish attached to an oxygen tank until that treatment is no longer enough.
It is heartwarming to hear of these two sisters, who at 69 and 71 were still healthy enough to receive a transplanted lung. It also breaks my heart, thinking about my mother, who at 61 wasn't even offered the chance at a transplant.
Unlike the women in the article, my mother didn't have health insurance. Her jobs didn't provide it, and she certainly didn't have the money to buy it on her own. The County of Sacramento provided basic care to those who couldn't afford it, which means that she could see a doctor, but only after waiting countless hours in line, and sometimes being told to come back another day.
In this system, designed primarily for crisis response and alleviating acute illness, my mom's shortness of breath likely didn't arouse much concern. She'd had a suspicious x-ray in 2003 showing spots on her lungs, perhaps five years before the shortness of breath set in. She was healthy, never a smoker, and very active. The clinic doctors figured she had asthma, gave her inhalers, and sent her on her way with no further thought.
Eventually, as her shortness of breath began to limit her ability to ride her bike and walk (her only means of transportation), they reluctantly agreed to send her to a specialist. Some two to three years after going in for shortness of breath, the pulmonologist confirmed that the spots on her lungs were scar tissue limiting her ability to breathe. His solution was to prescribe Advair (a maintenance corticosteroid inhaler) and prednisone (a steroid pill with horrendous side effects) on top of the "rescue" inhalers she had previously been given. That, and send her in for a lung biopsy to make sure it wasn't cancer.
This was in spring 2009. My mother was still working a job that kept her on her feet, riding her bike to get there, and walking for most of her other daily chores. She wasn't on supplemental oxygen (like the women in the article), and was otherwise in good health.
I'm not an expert, but this seems like this would have been a good time to suggest getting on a list for a lung transplant. Recently diagnosed with an incurable condition, but still healthy enough to go through such a taxing procedure.
Unfortunately, my mother didn't have health insurance. The pulmonologist was consulting for a county health system that likely discouraged costly procedures, if not outright forbid them. I'm sure some unspoken rule existed, devaluing the lives of those receiving care from this system. Transplants, it seems, were out of the question.
Though I did know of her diagnosis and the lack of treatment options, I didn't grasp how serious the condition was. The doctor I went to with my mother didn't seem overly concerned, and didn't really explain the long-term prognosis. If I'd understood, if it had been explained, perhaps I would have been able to do the research and find out about lung transplants as an option. Perhaps I could have gotten her on the list.
Heartbreakingly, my mother was never given the option of even waiting on the list for a lung transplant. She was given harsh steroids which eroded her quality of life, and did little to improve her lung function. As a low-income person without health insurance, she didn't have the option available, like the sisters in the recent article, to pursue life-saving treatment.
Just five years later, would coverage under the Affordable Care Act have made the difference?
