Drowning On land: Living With Interstitial Lung Disease

By Paul, United States, March 7, 2014

Hi, I'm Paul Brighton from Litchfield CT. In April of 2013, I fell Ill with pneumonia. It took four moths and a lung biopsy to discover I had (non-smoker) Interstitial lung disease, a rare disease that causes the interstitium of the lungs to be inflamed thus restricting breathing. My form of ILD is Cryptogenic Organizing Pneumonia and is idiopathic. I spent 47 days in the hospital. 24 of them in intensive care, one of them on life support. Just prior to my intubation and life support, a lung biopsy had been performed and a blood vessel was nicked in the process, causing me to bleed over a liter of blood internally. On top of my Cryptogenic Organizing Pneumonia and non-specific idiopathic Pneumonitis, I contracted Staff Aureus Pneumonia. Three pneumonias at the same time. The doctors told my family I was in grave condition and wills were being signed. I fought very hard for my life while in intensive care. I was 100% highflow oxygen for weeks, not able to breathe, and had terrible atrophy and lung pain. The doctors were not able to address my disease and treat me with prednisone until they addressed the infection. I was released on August 21st, and I am still currently on Prednisone with many side effects. Spinal Osteoporosis, diabetes, hypersensitivity, GERD, impaired kidney function, joint pain, insomnia, and immuno-suppression plague my every day living. Testing has ruled out environmental, occupational and immune causes. Because I am immuno-suppressed, I am susceptible to relapses simply by being around coughing or sneezing people, germs and cold weather. I have been outdoors only 9 times in 60 days. Without funding there's no research or hope for ILD and there are over 160 types of ILDs, from scleroderma, to sarcoidosis to idiopathic Pulmonary fibrosis. Many patients with acute versions of the disease, must confront the last resort and deal with life altering procedures like lung transplantation which can have somewhat of a low mortality rate. Some can manage their diseases for many years but at a steep price: from crippling Osteoporosis to prednisone induced diabetes, to kidney, liver and esophageal damage. 100 out 6,000 hospital patients are admitted to hospitals with interstitial lung diseases. In the UK, occupational causes like industrial-related exposures, machine dust, coal, metals, are a high cause of ILDs, yet funding for studies is very low. COPD is getting a lot of notice these days because of inhaler treatments like Spiriva, whereby commercials constantly bombard the airwaves and cables. COPD is an "obstructive" disease, in many cases caused by smoking. Interstitial Lung Diseases are "restrictive" in nature and are often caused by auto-immune responses, occupational and environmental factors and of often unknown causes, like mine. I am due for a second opinion at Columbia Presbyterian in a few weeks. I am seeing a transplant team who is highly skilled at understanding the rare type of disease I have, but I fear I will simply be put on long term medication if a cause is not found. And if a cause is found, what will be the remedy? I am in a scary unknown place as are many with my disease. Without awareness, without more testing, we may never know what caused my disease and I will live in fear of everything around me. If the disease cannot be kept at bay and my immune system keeps attacking my lungs, I will eventually scar and get fibrosis, in which case I will need a transplant. This is no way to live. Please help find a cure for ILD. Help spread the word and write to local senators and congressmen and hospitals and create websites, support this one, and tell everyone about your disease. Awareness is key to a cure!

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