Carol Rubin

After I retired as a NYC Principal, I worked in the field, supervising student teachers. Visiting many old school buildings with no elevators, I began having shortness of breath while walking up the stairs. As time went on, I suffered shortness of breath from walking uphill and doing activities that required lifting, reaching, bending (changing bedding). At first, I justified that I was out of shape, should lose weight (as so many others with COPD rationalize).

As the shortness of breath became more frequent, I went to a cardiologist who had me take a stress test and echocardiogram. The results were good; my heart was fine. This went on for another year; once again, the results were good. I never connected my symptoms to respiratory problems or my history of smoking because although I was a smoker for many years, I had stopped smoking 20 years ago. Finally, my cardiologist referred me to a pulmonologist. After taking the Pulmonary Function Test (PFT) in 2014, I was immediately diagnosed with COPD (emphysema). I was prescribed a maintenance inhaler to take daily and a rescue inhaler for use as needed. I joined a pulmonary rehabilitation program which was crucial for my COPD, with its positive physical results, education and support.

My journey began as I learned everything I could about this incurable disease, COPD and how to live with it and successfully manage it. I became an advocate in many areas: raising public awareness, reaching out to lawmakers for greater funding, being involved in research both as a participant and patient investigator, writing blogs for the patient population, co-authoring related articles with physicians, attending relevant conferences and webinars and more. This incurable disease will extend my journey for the rest of my life. Besides improving my life with a healthy diet, exercise and medication, my life has changed in the way I’ve learned to deal with certain weather conditions. Rain with wind and/or cold weather, extreme heat, humidity are possible triggers that could result in shortness of breath so I avoid them. I am under the care of a pulmonologist who provides me with the appropriate tests and guidance when necessary.

I try to live as normal a life as possible. As a retired educator, I do volunteer work and I love to travel and attend Broadway shows.

A patient colleague introduced me to the American Lung Association (ALA) and I was given the opportunity to continue advocacy as a member of the Patient Advisory Group. The ALA is the vehicle through which ongoing goals, projects and activities can do all that is necessary to eventually find a cure.