Coming Together to Crush Lung Disease
December 6, 2018
“Oxygen is like gold when you have COPD,” Bob recalled, “but breathing still comes with a struggle.”
In 2003, Robert (Bob) Castle was facing a diagnosis of COPD and realizing that life would be changed forever. Bob went from walking 40 feet before needing to take a rest at his initial diagnosis, to 100 feet with an oxygen tank. Before his diagnosis, Bob was incredibly active. His weeks were spent enjoying the outdoors, working as a general contractor, and, more importantly, spending time with his wife, Anne.
At the age of 58, his struggle to breathe normally started. After seeing his primary care physician, he was referred to a pulmonologist in Austin, Texas. His pulmonologist recognized the severity of Bob’s case during the initial patient interview and asked him to come back the next morning to start treatment.
Bob started pulmonary rehab shortly after his diagnosis. Even with treatment, he was not able to carry on with his usual lifestyle, but he was determined to come close to it. Struggles he and others had only heard about became too real. For example, getting around in airports: needing extra time to get through security; planning ahead for the amount of oxygen that needs to be packed; and taking extra precautions like wearing a mask, as planes are packed with germs.
“You don’t want to run out of oxygen. Running out of oxygen is like running out of gasoline. You have to manage your disease, plan ahead, and be aggressive with your health.”
Like many people diagnosed with COPD, it doesn’t only affect the patient but the loved ones who all too often become caregivers. The strain on Anne as a loved one and caregiver is something Bob was acutely aware of. Bob continues to stress the importance of your loved one and caregiver, “Don’t ever sell the caregiver short; they see you struggle day in and day out, and it gets hard for them in the end.” She struggled watching her husband suffer with COPD, and it was a good support group, where she could share her story and hear about the success of other treatment options, that gave her the most hope.
Bob lived with COPD for 10 years before he was approved for lung transplant. “Someone had to die to give me the gift of life.” Even the excitement at the opportunity for a better quality of life was extremely humbling to Bob.
Because of Bob’s determination, he recently celebrated the 5-year anniversary of his lung transplant this November. When asked about progress he has made, Bob was quick to note that he can walk over a third of a mile in under 6 minutes. He is now able to get back to hobbies he enjoyed, like playing golf and enjoying time with his wife. Anne now feels that she is more aware of her surroundings and offers encouragement to strangers with lung diseases. She claims one of the main factors that helped in her husband’s success was the honesty between he and his doctor. “Dr. Levine told us when we needed to worry, when we didn’t, and offered a lot of advice.”
Dr. Deborah Jo Levine, CHEST Fellow and member, Medical Director of Lung Transplantation at UT San Antonio, but, more importantly, Bob’s physician, put it very succinctly, “Bob is a very determined patient and never lost sight of living life to the fullest. As a chest physician, the overall care and support system are extremely important for every patient.”
It is because of stories like this that the CHEST Foundation finds continued success meeting its mission. It is because of patients like Bob, caregivers like Anne, and, most importantly, thoughtful, caring clinicians like Dr. Levine who continue to fight to find ways to crush lung disease.
As you think about giving this holiday season, please keep the CHEST Foundation top of mind, so we can continue to support many others who haven’t been able to tell their story or are still looking for the right support to have a happier ending like Bob’s.
Please give to the CHEST Foundation (chestfoundation.org/donate) this holiday season, as we all work toward championing lung health for the future generations and provide the best care to patients living with these chronic lung diseases.
Again, thank you for all you do not only to improve patient outcomes but to show how much you care about the patients you serve. You are the lung health champions who patients and families deserve and count on to make a difference, every day.
Hope you have a safe, healthy, and happy holiday season!
To donate, go to chestfoundation.org/donate or contact Angela Perillo, Director of Development & Foundation Operations, +1 (224) 521-9520, to discuss your giving options.