By Paul Brighton
My name is Paul and I’m 52 years old. I was considered too young to have Cryptogenic Organizing Pneumonia, one of over 100 Interstitial Lung Diseases (ILD, where fibrotic tissue forms and restricts breathing.)
ILDs are considered progressive and life-threatening, with most having a life expectancy of 3-5 years. I was ill with pneumonia symptoms for four months before I landed in the hospital and began a two year journey that changed my life. I felt out of breath at first, then a burning sensation in my chest, then night sweats and fevers, followed by intense headaches and coughing. I ended up needing an emergency bronchoscopy, at Yale New Haven, to determine what type of ILD I had. During the procedure they nicked my lung and I bled over a liter of blood internally and was immediately put on life support. A day later I contracted Staff Aureus Pneumonia, and I took a turn for the worse. At this point I was in grave condition. I was on 100% oxygen for over 24 days, but began to recover and was finally sent home after 48 days in the hospital with several relapses during the next 24 months.
As with many Idiopathic diseases, what we don’t know about them creates a shroud of mystery in our lives. As a patient I never know what hit me. It set my life and career back and forced me to sell nearly all of my possessions and home. With massive doses of Prednisone my disease got in control, but the fear of its return weighs heavily on me. Being able to live again is a gift but also presents a problem in that because others forget I have a disease they minimize and downplay this rare condition to the point of frustration. Diseases like cancer and MS and other diseases seem to get more consideration than ILDs because it involves the lungs, and most people believe that I must have caused it myself. That I was a smoker or that I worked in a factory or that I had a bacteria or virus that was self imposed.
My lung disease is still there and fibrotic tissue is still present, but stabile. I am no longer on oxygen, but in no way cured. With Cryptogenic Organising Pneumonia, in some cases, patients can stabilize the disease with steroidal therapies, and in some cases use soaring agents and medications used for MS patients to prevent further inflammation in the lungs. My challenge is to eat healthy and make breathing easy by being fit and increasing my lung capacity.
I must visit my doctor every three months to make sure I am not getting sick again. I have learned to appreciate life and every day is an important part of my uncertain journey. Support from family and awareness for this disease is critical in order for patients to be taken seriously and get support. Breathing is not easy, pain is serious and getting a simple flu can easily kill me.
For people suffering with ILDs, I advise you to lose weight, even if you’re on Predinisone, it can be done. Reduce the risk of getting sick by staying out of large groups of people and children. Shop late at night when less people are in a store. But most importantly, form support groups and share your stories to help educate others about how serious our condition is.