I’ve probably mentioned this a thousand times by now but a biopsy is the only definitive way to get an accurate diagnosis for sarcoidosis. As is typical with this disease, even these can come back as inconclusive though. It took three tries for me and three different kinds of biopsies before I got my diagnosis.
The first one I had was a skin biopsy. It came back as “probable sarcoidosis” and at that time my dermatologist blew off the results. She never even asked one question about how I was feeling, nor did she explain to me what sarcoidosis was. She said and I quote, “You’re young and healthy. I am sure you’re fine. This disease is no big deal.”
Out of shear curiosity, I went home and looked the disease up on the internet. I quickly realized I was probably not as “fine” as my dermatologist thought. I had a lot of the symptoms of sarcoidosis and had them for a long time. They snuck up on me and they were subtle. I figured all of them had to do with something else. I was tired all the time. I work too hard. I cough a lot and have swollen glands. I have allergies. My body aches. I’m getting older. I had slowly gotten used to feeling lousy all the time and it became normal for me but feeling lousy all the time is apparently not really normal at all!
Armed with inconclusive biopsy results and my own growing suspicion that maybe something was really wrong, that maybe I shouldn’t feel so incredibly run down all the time, I called my primary doctor for an appointment. He did a chest x-ray, blood work and some breathing tests. He also asked me a million questions. He did all the things my dermatologist should have done. While all my blood work was okay, the x-ray showed some “spots” and my breathing tests were dismal. This prompted him to send me to a pulmonologist. A very wise move.
This was when the real fun began. The pulmonologist did more in-depth breathing testing, got a CT scan and did more blood work. Upon getting these results, she informed me that something serious was wrong with my lungs, that it was likely sarcoidosis but she could not rule out cancer, infection or some other interstitial lung disease without doing a biopsy. She informed me that my lungs were fibrotic and that whatever was going on, probably had been for some time. So, we scheduled my second biopsy. This time I was to have what is called a bronchoscopy. This test allowed the pulmonologist to take a look at my throat, larynx and lower airway as well as take some tissue for examination.
Sarcoidosis does not like to make things easy though.My bronchoscopy also came back inconclusive. My pulmonologist was growing increasingly concerned that she wasn’t sure what was wrong with me. She had put me on a course of corticosteroids when I first started seeing her as this is the “standard” treatment for sarcoidosis. She wanted to provide me with some kind of relief from my symptoms while she tried to figure out what was going on. These were not helping me breath better either though. My sister had lymphoma and because the usual treatment for sarcoidosis wasn’t working for me, cancer was a very real possibility and my pulmonologist did not want to do the wrong thing. She had to find a way to get a diagnosis.
I reluctantly agreed to biopsy number three. This one was going to be an open lung biopsy; A procedure called a VATS which stands for video assisted thoracoscopic surgery. It is described as being “minimally invasive”. I am sure it is less invasive than a typical open lung biopsy but there was still nothing about this procedure that was not invasive. During a VATS, a tiny camera (thoracoscope) and surgical instruments are inserted into your chest through several small incisions, your lung is deflated and the surgeon can take pieces of lung tissue for further examination. When you wake up from the surgery, you have a chest tube placed in order to help re-inflate the lung and remove blood and other fluid from the recently operated on organ. I was hospitalized for three days and had a morphine pump. I developed an infection after the procedure and had to go on antibiotics. Instead of having one long scar, VATS gives you four little ones and sarcoidosis developed in all four of mine. Another parting gift of my third biopsy, permanent nerve damage because one of the tiny instruments cut a nerve. This is apparently quite common with this procedure. So now I live with burning nerve pain on my right side and along my right rib cage.
The third and most difficult biopsy did get me a sarcoidosis diagnosis. It was a difficult procedure and I tell this story in order to say just a few things. First, don’t let your doctor blow you off. If my dermatologist had done what she should have done to begin with, I might have avoided a year and half of uncertainty and confusion because that’s how long it was from the time I had my skin biopsy to the time I had my VATS. I also tell this story to show how complicated sarcoidosis can be. I credit my pulmonologist with saving my life. She often tells me that I had not gotten to her sooner, I would have surely gotten to her too late to halt further damage to the lungs but even she had trouble diagnosing me. It was a good year and a lot of poking and prodding before she finally figured it out. Finally, I tell this story to say, don’t give up. If you’re not getting answers, keep pushing for them.