The official blog of the Lung Institute.
*Disclaimer: This is an interpretation of a patient living with interstitial lung disease (ILD).
“In July 2007, my wife and I were very excited to move into our new home. This was the moment that we had been looking forward to for such a long time. Just a place to call our own. It was during this move when I first noticed something was wrong with me. After only moving a few boxes, I was completely out of breath. For a man at the age of 33, this was very alarming. It didn’t stop there. Almost every other night, I was sweating and coughing. Thinking that I had a simple case of bronchitis, I visited my doctor to get help. After what felt like a thousand tests, my doctor sent me to get X-rays and a CT scan. The results came back as abnormal. My doctor explained to me what I was experiencing as interstitial lung disease. This was the first time that I had ever heard of the disease. Apparently scarring was visible on my lungs, which was making me short of breath and prone to coughing. This was preventing me from absorbing oxygen properly. From here, I needed to visit a pulmonologist.
Like many people after learning about a new condition, I turned to the internet for answers. My research was providing me with a lot of reasons to be worried. 100 different types… Relief only for symptoms… No cure… These were the trigger words that made me fear this new condition that I had only just been diagnosed with. About two weeks after learning about my disease, I had my first visit with my pulmonologist.
This amazing doctor was able to give me a better understanding of interstitial lung disease. He described that sometimes pulmonary conditions can occur from the air pollutants and smoke that we breathe into our lungs. This explained how I was exposed to the condition. At the time, I was working at an electrical plant that specialized in using coal. My pulmonologist believed that the constant exposure to different pollutants from the plant led to the development of my disease. He went on to perform a biopsy to find out the extent of my disease and the best course of treatment. A week later, I finally had answers for all of my lingering questions, and more importantly, a treatment plan.
Months after a treatment of antibiotics and steroids, I started to feel better again. I could breathe easier and walk further without feeling exhausted, but this has proved to only be a Band-Aid for my condition. To be honest, over the last few years, my daily routine has become taking medications to relieve the symptoms of a condition that I know will never go away. There have been some pretty low points. There are times that I don’t want to go on fighting my interstitial lung disease, sometimes I think it just isn’t worth it. There have been exciting times as well. I’ve been able to experience the joy of my children being born, spending holidays with family and even going on a vacation or two.
Seven years after being first diagnosed, I am still living with interstitial lung disease. I’ve experienced every version of coughing you can imagine, not to mention, the ongoing feeling of being winded and just downright tired. Some days are better than others and other days are miserable. This has been the nature of my condition. Today, I currently have to use some oxygen therapy if I get too tired, and my lung function is currently around 50 percent. I have faced the fact that this is my world from now on, but I’m still thankful to be here. My symptoms and disease have dramatically changed my life, but I am still able to do more than most with my condition. I’m still able to work (this time at a desk job), go to my son’s baseball games and watch my daughter take her very first steps.
So I write to you, those who have interstitial lung disease and experienced the struggle that comes from dealing with this condition, my wish is that you will take hope in my story and know that there are always ways to enjoy the little things in life. Medical advancements are always occurring. I have seen where stem cell therapy has improved lung function and even reduced the need for oxygen therapy, which is a hopeful sign that one day my condition might be reversible. I wish anyone who lives with interstitial lung disease the best of luck and to have the kind of support I have seen from my family and friends.”