"Around 8 years ago I started to experience a bit of joint pain. There was numbness in my hands and feet. I would feel fatigued and gradually it started to worsen over time. When I became pregnant with my third son in 2013 I began experiencing shortness of breath. I was sent to see a Respirologist and had VATS lung biopsy done. From that they determined that I had a serious interstitial lung disease, but the doctors were unsure of the cause. Interstitial Lung Disease, is a condition that is part of a group of disorders. It causes inflammation and scarring of the lung tissue and sufferers have an average life expectancy of between just three and five years. My initial Respirologist had originally thought it was caused by GERD Disease which causes Acid Reflux. He began treating me for that as well as prescribing steroid puffers. He told me to stop a year later because they were not working. At the time I was still suffering from horrible joint pain, fatigue as well as numbness in my fingers and toes. This disease would eventually take my life and the only thing that could prolong it was a lung transplant. My husband and I walked out of the office after having just been told by the specialist that there is no cure or treatment. We were not only confused but devastated. How could this be? We had no idea how to process any of this and no one to turn to for advice. I tried as hard as I could to explain to my family what was said but had no idea how. They had so many questions just like I did but there were no answers. I did what I thought was best and kept them at a distance while keeping to myself. I just knew in my heart that something was not right. There was no way I could just give up hope and go on living knowing that there was something more serious going on. I knew I needed to be treated for it as soon possible.
After two years I decided to ask that my doctor send me for a second opinion. Thankfully he did. I saw a Respirologist in North Bay in 2015. He was remarkable and had sent me for further testing and came to an honest decision that he had no idea what he could do to help my condition. He did the next best thing and contacted Doctor Shane Shapera, who runs the Interstitial Lung Disease Clinic at the Toronto General Hospital. He told me that this would be the best place for me. It’s safe to say he was right. I have been a patient of the ILD Clinic in Toronto since 2016. They have been amazing, and I couldn’t ask for better people to be around. Since I started with the clinic, they were able to refer me to a variety of different specialists in Toronto to find the cause of my condition.
After a year of traveling back and forth to Toronto and meeting different specialists, I was finally diagnosed with Seronegative Rheumatoid Arthritis. The Seronegative part meaning that I am missing the certain antibodies in my blood that help with the diagnosis of Rheumatoid Arthritis. This is the main reason I went undiagnosed for so long.
Rheumatoid Arthritis is a chronic inflammatory autoimmune disorder, meaning that my immune system is mistakenly attacking my own body. RA affects more than just the joints. In some people, the condition can also damage a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels. My case of Rheumatoid Arthritis causes severe fatigue and chronic excruciating joint pain that makes even the simplest tasks difficult. My Rheumatoid Arthritis started to severely affect my lungs. I noticed a severe decrease in the quality of my life stemming from the complications in my breathing and the chronic shortness of breath. Simple things like picking toys up off the floor have been near impossible to do for the last two years.
My Rheumatologist and Respirologist made the connection between my Interstitial Lung Disease (Pulmonary Fibrosis) and the presence of RA. The Rheumatoid Arthritis was the cause of my Pulmonary Fibrosis and using this information, my specialists were able to connect the dots and diagnosed me last year with Rheumatoid Arthritis. Pulmonary Fibrosis is a condition where my lungs become scarred over time. Eventually the scarring got to the point where it affects my ability to transfer oxygen to my bloodstream. This forced my lungs and heart to work harder and lowering the amount of oxygen being delivered throughout my body. This caused the numbness in my limbs and clubbing of the extremities such as fingers and toes. The lack of oxygen to my brain also causes memory complications.
Last year, with all this new information my specialists worked together to create a treatment plan geared towards my RA using medications such as Plaquenil and Imuran in hopes that it would stop the progression of the lung disease. These drugs did indeed help treat my RA symptoms, however they did nothing to improve my lungs. Despite the medications, my lung disease did not show any signs of improvement and in fact have severely progressed throughout both of my lungs. There is no way to revert this damage rapidly spreading through my lungs and the only option available to me is a double lung transplant. Currently, I’m in the assessment phase of the transplant process. I’m undergoing many tests and procedures to decide whether I qualify for the transplant that will save my life.
I need everyone to know, that no, I am not scared. I don’t fear dying because I know there is no such thing as death, only transitioning. What I am truly fearful of is leaving my boys to grow up without their mother and not being there when they need me. I have been trying to prepare everybody as much as I can in case I don’t make it. I don’t want anyone to feel like there was anything more they could do. No matter what this disease has done to me, I can comfortably say that if I had the choice to relive my life I would do it all the same. It’s made me the person I’ve become today, and is part of my life story."