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 use 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) Sjögren’s syndrome, rheumatoid arthritis, lymphoma (later retracted), and finally, sarcoidosis, with ILD discovered soon after when it was revealed that I had pulmonary fibrosis.

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 test, 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 Capitol!). 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 primary care physician (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.

One of the unfortunate downers of living with sarcoidosis with ILD, and the associated disorders I have, 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 and serve as a Patient Navigator with the Foundation for Sarcoidosis Research. 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. 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.

However, I am a lemon/lemonade guy, and I try to make some good out of each day. So, on the rough days, I log onto the FSR Inspire support pages and encourage other sarcoidosis patients who may be going through difficult times, especially the pulmonary sarcoidosis sufferers like me. 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 and small vegetable 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.

 

  • Jim Kuhn, FSR Patient Advocate/Navigator, FSR Speaker’s Bureau 

 

The first ILD Day will take place on Wednesday, September 15th. There are more than 200 types of interstitial lung disease (ILD), and more than 250,000 Americans are living with pulmonary fibrosis and ILD. To learn more, or to register to attend an educational webinar on ILD, please visit www.ILDDay.org.