The Story of One Woman’s Lifelong Struggle with Chronic Cough
Paulette Nyahay is no stranger to dealing with lung disease. At age 38 she was diagnosed with asthma, after struggling with breathing problems all her life. She developed severe allergies, not only to environmental factors but also to food and even a sensitivity to smells. A simple cold could cause her breathing and coughing to become unmanageable which is why she spent many years in and out of the hospital, reliant on steroids and antibiotics. After a particularly bad coughing spell that caused her to lose her voice completely and landed her in the hospital yet again, Paulette decided she needed to do something to stop this cycle of sickness.
Chronic cough is a persistent cough that lasts more than 8 weeks and cannot be attributed to any other lung disease. "It is often hard to diagnose because doctors commonly believe that if they can't find a serious lung condition explaining the cough, that these patients aren't really sick. However, these persistent coughs can be very debilitating. Some patients cough so much that they break their own ribs, lose bladder control, and stop socializing due to being ostracized when they are in public," explained Dr. Rogers, a pulmonologist at Mount Sinai National Jewish Health Respiratory Institute and researcher with the American Lung Association Airways Clinical Research Centers (ACRC).
Paulette experienced this firsthand when she visited an ear, nose and throat specialist and was sent away with the instructions to just rest her voice and speak to a speech pathologist. The speech pathologist was equally unhelpful, but with Paulette's insistence, referred her to a specialist in voice and swallowing disorders. There, Paulette finally got some explanation for her suffering. The doctor removed two polyps from her vocal cords and began to treat Paulette for GERD. In January 2009, she underwent surgery to address the reflux problem and was enthusiastic when it initially offered some relief.
Unfortunately, she was still in and out of the hospital frequently, using a nebulizer three to four times a day and relying on steroids and antibiotics to manage her symptoms.
By 2015, Paulette's life had become unbearable. Stuck in the hospital, on an IV of steroids and antibiotics, in constant pain and unable to speak, Paulette felt hopeless. A new set of tests showed that Paulette was suffering from an infection caused by mycobacterium avian complex (MAC), which was treated with three different antibiotics over the course of a year. Despite this treatment, the coughing continued, to the point of vomiting. "I thought I was going to die," Paulette recalled. "I thought I was going to pass out. It felt like I would never get my breath back." New medications caused more complications, including the inability to swallow to the point that food got stuck in Paulette's throat and she had to be rushed to the ER. Frustrated and out of answers, Paulette's doctors decided that it was time to get another opinion, so they recommended she see Dr. Rogers, a pulmonologist and asthma specialist at Mount Sinai National Jewish Health Respiratory Institute in New York.
Paulette's first meeting with Dr. Rogers gave her a glimmer of hope. Dr. Rogers listened to Paulette's harrowing tale, ran some tests, and instructed Paulette, for the first time in her life, to cut back on her medication and stop using the nebulizer completely. An examination confirmed that Paulette had laryngopharyngeal reflux (LPR), neuropathy and her vocal cords were extremely bruised and beaten.
"Paulette was one of my most challenging cases of chronic cough." Dr. Rogers said. "Her persistent cough was attributed to her asthma, resulting in repeated courses of oral steroids which caused severe side effects. When I met Paulette, she was very impaired by her condition. She was hoarse and consistently felt like there was something stuck in her throat. Those were clues to me that her cough was not from asthma and that it was not going to improve with steroids." Dr. Rogers began instead to treat her for chronic cough.
Since then, Paulette has been working closely with an otolaryngology laryngology team and speech therapists to control her coughing spasms. "In some cases, we use medications to try to modulate the nerves in the larynx that are contributing to the chronic cough. Although there are many gaps in our knowledge about this condition, to date the most effective combination of therapies for these cases include speech therapy with or without a neuromodulating medication," said Dr. Rogers.
Though she still struggles from coughs from time to time, Paulette says that just having a name for her condition and a doctor who supports her has made a big difference. She has slowly been weaning off of medication, and now only takes some for her asthma medications. "It took a long time to get to where I am right now. There are days I still can get frustrated, but I try to stay positive and continue to educate myself. I am sure there are many others who are suffering and are undiagnosed," Paulette said. "If I learned anything it is that you need to be your strongest advocate. It is hard to explain mysterious coughs that sound and look like asthma, but you can't give up. It is your body and you know the difference." She also hopes that stories like hers will help bring more awareness to the medical community and offer hope to those struggling with this misunderstood condition.
Dr. Rogers is also doing her part to reduce the burden of this condition by participating in research. She is one member in a team of investigators in the American Lung Association's ACRC: ZICO-the Pilot of Zinc Acetate to Improve Chronic Cough and Chronic Refractory Cough Cohort (COCO) clinical trials.
Visit our Research page to learn more about the American Lung Association's research initiatives.
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