You've heard of people wearing many hats...meaning they have many different ways they present themselves or many different functions they perform. I am finding out that this rare auto immune disease that I have had for my entire life that just recently was given a name...also has many "hats" so to speak. My Sarcoidosis was diagnosed after I went through a month of terrible bronchitis like illness in my chest and went to the doctor for antibiotics. I was given a pulmonary function test which I did very poorly on. I then was sent to the hospital for a second pulmonary function test which I also did poorly on. It was then determined that I needed to see a Pulmonologist. A few days later I was in his office and he sent me for a chest x-ray which showed two lung nodules in my right lung and he of course was concerned. Immediately he sent me next door to the hospital for a Ct scan which showed in more detail two lung nodules, lymph nodes in my chest enlarged and of course this raised some red flags. A Pet Scan was ordered for the next week. Pet Scan was done and the results were phoned to me and didn't sound too promising. I was told that fifteen lymph nodes lit up as well as the lung nodule in the upper right lobe of my lung. Whenever anything lights up on a Pet scan of course there is the suspicion of Cancer. The next step was an Endoscopic Ultrasound with Fine needle aspiration to biopsy some of the lymph nodes in the upper chest area. This was done and the result was that there were no cancer cells present in those particular nodes however granulomas consistent with Sarcoidosis. Next was a visit to the Pulmonologist who then referred me to the surgeon ...the Thoracic surgeon who would do the lung surgery to remove the wedge of my lung in order to biopsy the lung nodule. This was one of my most painful surgeries ever. I have had about ten surgeries so I do know what I am talking about. It has now been about six weeks since my surgery and my ribcage still is so painful when I inhale. The lung nodule turned out to also be consistent with Sarcoidosis granulomas. Thankfully it was not lung cancer, and I am thankful since that is a very aggressive cancer; however what people don't realize is how insidious this disease is and can be also! Sarcoidosis causes blindness, joint and bone pain, chronic lung disease, liver problems, kidney problems, skin problems, headaches, chronic extreme fatigue, infections , the immune system basically attacks itself! And yes ...we are more prone to have cancer than the general person. Sarcoidosis in itself feels like, and mimics cancer. In talking with some other Sarcoidosis patients online I have found that most of us have at one time been told we may have Lymphoma, but it usually turns out to be the Sarcoidosis showing its ugly hats and mimicking it. However, there are Sarcoidosis patients who develop Lymphoma so there are no real answers as to why this happens. This last year I know my body has acted and felt as if I have cancer...I do not know at this point if the Sarcoidosis is solely responsible or if I indeed do have both. Usually Sarcoidosis patients do not have the lower abdominal lymph nodes light up on the Pet Scan and mine did so we will see if I am just one of those rare Sarc patients or if I indeed do have Lymphoma along with it. I go to the Oncologist on Tuesday of this next week and I hope I will come home with some concrete answers so I can begin some kind of treatment plan to help so I can at least begin to feel decent again.
