My journey with Interstitial Lung Disease (ILD) started about 15 years ago, although I did not know it at the time, nor did the physicians who were then treating me. At an annual physical, at the age of 46, I mentioned that my knees were a bit sore after physical exertion and didn’t snap back as quick as they used to. My doctor added Rheumatoid factor (RF) blood test among all the other tests. That triggered a series of doctors, tests, and procedures over the next several years that led to being diagnosed with (in order) Sjogren’s Syndrome, Rheumatoid Arthritis, Lymphoma (later retracted), and finally, Sarcoidosis, with ILD discovered shortly thereafter.
Initially, I would only have breathing issues during times of extreme physical exertion. Actually, my joints would give out before my lungs most times. Since my original diagnosis, I go through a regimen of chest x-ray every six months, and a CT scan, along with other annual tests. Over time, my lungs grew less and less dependable, and I could see a slow decrease in my Pulmonary Function Tests and other measures my doctors were keeping (Six-minute walk, Pulse-Ox, etc.).
Fast-forward to today, ILD has become a big part of my life. I have to think about every aspect of my day. I have to plan around restrictions caused by ILD. I have to think about how many steps I may have to walk from the parking lot to an appointment. Is it a straight shot or will there be any steps? (I once got surprised by how many steps are at the US Capital!). And, the one that gets to me the most…will I have to walk up any hills – big or small? Any of these obstacles – individually or in combination – make me short of breath. So, I need to plan how to handle any of these challenges. I may look for different parking, different walking paths, and/or approaches to my errands.
My PCP sent me to pulmonary rehab several years ago and it was one of the best things to help me cope with ILD, especially with shortness of breath episodes. I use the breathing exercises they taught me while walking to help me deal with these obstacles. In fact, I highly recommend pulmonary rehab to anyone who struggles with breathing issues.
One of the unfortunate downers of living with ILD, and the associated disorders I have – other than the obvious breathing issues – is the chronic pain and fatigue I experience every day, and its varying nature. I don’t know what kind of day it will be until I arise each day. Some days are OK, with average pain and fatigue, allowing me to enjoy some activities and manage my ILD. Other days, I wake up with burning joint pain, achy muscles, and overwhelming fatigue that just gets worse over the course of the day. My ability to breathe is worse on these days too. These days are largely spent parked in my recliner on a heating pad.
I won’t lie, living with ILD, and Sarcoidosis, is not fun. However, I have found the right precautions and lifestyle approach to allow my wife and I to enjoy our lives quite well. We don’t let ILD ruin our enjoyment of life. We like to spend time with friends and family, and travel as often as we can. I also volunteer as a Patient Advocate with the Foundation for Sarcoidosis Research – the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients. There, I help give newly diagnosed patients tips to understand and live with this rare disease, and to find knowledgeable healthcare providers to care for them. I try to encourage other sarcoidosis patients who may be going through difficult times, especially the pulmonary sarcoidosis sufferers like me.
I really find that when I help others with their health-related challenges, it helps with my own self-advocacy and self-care. The same words that I share with them are the same words that I need to hear myself. I find this work very fulfilling and definitely helps ‘fill my box,’ giving me a sense of achievement. Even though we are joined only by our nasty diseases, being part of the same community gives us all hope and comfort.
Around the house, my happy place is working in the yard. I don’t cut the grass any longer, but love to work with my flowers gardens. On my good days, I’ve found I can sit on the ground to work and it’s less stressful for my body than stooping or squatting. Working in my gardens and being outside is where I get my most enjoyment in living with ILD. Even being careful to take it slow, I’ve had sudden attacks where I felt I could not take a full breath and needed help from my wife to get me to a chair to recover.
Living with ILD and sarcoidosis is hard. I have an advanced form of sarcoidosis, impacting multiple organs besides my lungs, so life is very hard. However, I have found I still find ways to have a life of significance and to enjoy life despite the burden of ILD/sarcoidosis. Each day brings new challenges, but each day brings new opportunities to share with others what I have learned and help them along with their journey and, together, we will all hope for a better future.
About the Author:
Jim Kuhn is a Rare Disease Warrior/Advocate/Speaker/Mentor. He was diagnosed in 2014 with sarcoidosis that initially started in his lungs/lymph nodes, before quickly spreading to his eyes and skin, and most recently he was also diagnosed with neurosarcoidosis. He also suffers from several other related rare diseases and a complicated medical condition. Jim is passionate about helping other sarcoidosis patients and giving them tips to understand and live with the disease, as well as find knowledgeable healthcare providers. Jim spent 35+ years in global business and medical missions leadership roles, and now looks forward to using that experience to help create, implement and strengthen his Patient Advisory and Speakers Bureau roles within FSR. His specialty is developing highly functioning teams and servant leadership. Jim and his wife of 33 years, Jean, refuse to let his disability ruin their enjoyment of life. Jim enjoys spending short periods of time gardening, and is an accomplished cook that has won multiple awards in national chili cook-offs.