It was 2005 and Roberta woke up with something wrong. She was uncomfortable, and small rashes and welts covered her face, neck, and arms. Frightened, she woke her husband. Seeing her distress, he rushed her to the emergency room.
After hours of testing and waiting, the physicians at the hospital were nowhere close to determining the cause of Roberta’s condition. They treated her skin irritation, and wrote a prescription that addressed it like a common allergic reaction.
A few months later, Roberta was again in discomfort. This time, however, something was different. She was constantly out of breath, couldn’t climb stairs, and could barely make it through the basic functions of daily living. After numerous visits to her doctor, she was finally diagnosed with pneumonia. While her doctor attempted to treat her illness, it seemed as if her symptoms never got better.
After a series of specialists and an alarming shortness of breath, Roberta had her husband again take her to the emergency room. Because of her extreme lack of oxygen, she was admitted so that doctors could hopefully pinpoint the cause of her condition: she couldn’t breathe!
Things took a turn for the worse when the phone rang at the house. It was the hospital, calling for Roberta’s husband. This one took his breath away. Roberta’s lungs had collapsed, and the physicians needed his permission to put Roberta on life support. It was only then that someone suggested a possible trigger for Roberta’s dangerous decline: Idiopathic Pulmonary Fibrosis.
Pulmonary Fibrosis is a scarring of the lung tissue that results in difficulty breathing. There is no certain cause for it, no way of knowing who may get it, and no cure. Some have had moderate success in treating the symptoms, but the ultimate option for some is a complete lung transplant. Over 128,000 people in the United States has Pulmonary Fibrosis, with about 48,000 new cases diagnosed each year, and about 40,000 dying of the disease. That is about the same mortality rate as breast cancer, but much less is known about this disease.
Roberta eventually recovered enough to return home, but her days were a maze of medical mayhem, pain, and confusion. She wasn’t interested in seeing or talking to anyone. Her husband spent hours researching the disease and trying to sort out their medical options. Then one day, he came across Caring Voice Coalition. He sent in a request for more information. Roberta thinks back and says, “We had no idea what a blessing we had just encountered.”
They received a phone call from a CVC representative who explained the mission of the group, and upon hearing the diagnosis and condition of Roberta, began to offer contacts and organizations that would be able to assist. Roberta says that the initial contact offered them an “angel in disguise” who has been with them ever since.
Caring Voice Coalition was able to find insurance for Roberta that was reasonable and affordable, and suggested a local organization that catered to PF patients. The organization continues to work with Roberta and her family, helping them to deal with a chronic and ultimately fatal disease.
Roberta still suffers with Pulmonary Fibrosis, and she’s still scared. Each day is confusing, and she’s still adjusting to living with her disease. She’s doing better, though, and she says that with the help of CVC her family can breathe again.