- CASE FILE
Since being diagnosed with Pulmonary Sarcoidosis, the symptoms keep increasing and the explanations are decreasing.
ABOUT THIS CASE FILE
Almost 4 years ago, I began having extreme shortness of breath and pain in my chest. At the ER, it was determined that I had bilateral pulmonary embolisms. The doctors were unable to explain why because I was not predisposed for the markers that usually explain the cause. Even on blood thinners, my shortness of breath, while better, still caused me issues. Following a follow up CT scan to check the status of the clots, it was found that I had many enlarged lymph nodes/granulomas in my lungs. I was referred to a pulmonologist. He performed a lung biopsy checking for Sarcoidosis but the test was negative. In the interim, I was sent to the dermatologist for a dry, patchy lesion on my forehead. The dermatologist took one look at it and said it was either Lupus or Sarcoidosis. A biopsy proved it was Sarcoidosis and began what has been a nightmare ride. The pulmonologist began treating me for pulmonary sarcoidosis.
I am seeking help because since that diagnosis, the Sarcoidosis has invaded my joints, caused changes in the white matter of my brain, debilitated me to the point of quality of life is greatly diminished. I have battled obesity my whole adult life. Despite that, I have led a wonderful, active, joy-filled, enriched life-until the beast of Sarcoidosis entered the picture. I now take upwards of 15 pills a day. I sleep with oxygen every night. I am unable to walk any distance without losing my breath and having extreme joint pain. I am no longer able to do household chores. I work 2 days a week and am able to do so because it is a desk job. I had to give up the outside obligations that I once participated in through my job. I am unable to go to a store unless they have a motorized cart. I spend my time with my granddaughter sitting in a chair. Anytime I have a new symptom and go to any of the eight specialist that I have, it is almost always blamed on Sarcoidosis. Mouth ulcers? Sarcoidosis. Extreme lower back pain? Sarcoidosis. Increased fatigue? Sarcoidosis. The medication regime that I went through shrunk the granulomas but there is damage from them that will always be there. I have Sarcoidosis induced asthma. I spent 9 days in the hospital last year as physicians searched for answers to an almost month long headache. My husband has basically become my caretaker. I'm only 56 years old. While I believe I have a good team of doctors, I believe there are those more educated in Sarcoidosis. I live in a very rural community and while we have one of the top hospitals in the state, it is not a teaching hospital nor are there any Sarcoidosis specialists within an hour or so of me. I've asked for a referral to Shands or Mayo but have not gotten it.
I also have had more blood clots and now I will take blood thinners for the rest of my life. All of my clots have been unprovoked meaning there is no rhyme or reason as to why they occur.
I would like to know more about my condition, about possible other treatment plans, reduce the number of meds that I take daily. I want to know if this is something my children need to be concerned about being faced with one day, the clotting and the Sarcoidosis.
I am certain I am leaving things out but rest assured when I tell you that Sarcoidosis affects every aspect of my life 24/7. I just want to be able to have a fulfilled life and enjoy my loved ones.