My Story

I was diagnosed with sarcoidosis in 2003, a chronic inflammatory condition that primarily involves the lungs, although I probably had had it for a few years prior to that. Unusually, my initial symptoms involved my kidneys. For reasons that no one at the time could figure out, I kept forming massive and very painful kidney stones and had required multiple shockwave treatments to break the stones up so I could pass them. Since 2002 I have had no less than 12 such treatments, each one involving anesthesia and a day in the hospital. In the spring of 2003 I was experiencing night sweats, an annoying dry cough, wheezing and was pretty tired all the time. I also had some swollen lymph nodes in my neck. Truthfully I didn’t pay too much attention to these symptoms, I was pregnant and expecting my third baby, you don’t always feel your best when you’re pregnant! When the baby miscarried I found myself at the doctor’s office. He drew some blood, gave me a complete physical exam, ordered some x-rays and then told me that he thought I was very sick, so sick in fact that he told me to prepare myself for the news that I had cancer, probably lymphoma. My lasting memory of that time was driving home from the doctor’s office, alone, grieving the loss of our baby and wondering to myself, how in the world am I going to tell this to my husband?

Eight years later, I now know that it wasn’t cancer I had but sarcoidosis. When I initially received that diagnosis, those in the medical profession were almost congratulating me that I didn’t have the dreaded “C” word. The common belief was “you’ll be fine. It goes away by itself in a year or two, three at the most. About six months of treatment and you’ll be fine!” This turned out of course to be not true. Eight years later my treatment requires me to receive a medicine through an IV in the hospital every 4-6 weeks. Chronic inflammation in my lungs has caused permanent lung scarring, created a cavity in my lung, and caused my airways to become floppy and lose their elasticity. Any respiratory infection I get is cause for concern. I have experienced sarcoidosis on my skin, in my lymph nodes, spleen, sinuses, kidneys and lungs. I have developed a tingling sensation in my left arm, fingers and toes and left side of my face suggesting nerve involvement and arrhythmias suggesting heart involvement. To receive adequate health care I fly over 900 miles every three months to see a sarcoidosis specialist in Denver, Colorado.

I am a musician and I love to sing, it’s my passion and my job, but sometimes I simply cannot, there’s not enough breath. Sometimes when I sing long phrases it induces coughing fits where my lungs go into spasms. I have had to quit my job teaching movement and song to toddlers and pre-schoolers as it was becoming too hard to sing and move around the classroom with these active little folk. When I play outside with my children I have to stop frequently to rest, catch my breath or cough! When my daughter was five she asked me if the doctors could make me well enough to be able to play tag with her, this was what she wished for. Despite some pretty serious medication, the sarcoid remains active, refusing to go into remission, although I do feel better than I have in a long time and my quality of life has improved. During active disease spells I will need to go to bed in the afternoon so I have enough energy to get through the day. I will run daily low grade fevers and feel achy and “flu-ish” all over.

Sarcoidosis is a poorly understood disease. There is no consensus among medical professionals as to what causes the disease, therefore there is no way to cure it. The most common way to manage the disease is by trying to reduce inflammation and suppressing the immune system. This brings its own complications. Sarcoidosis does not rank high on the list of diseases that receive a lot of funding for research nor a lot of attention from the general public. Many people are unaware of how debilitating a disease it can be, how it can rob you of the prime of your life afflicting as it does mostly those between the ages of 30 and 50. Similar to other chronic diseases, someone with sarcoidosis doesn’t always look sick so those around them may not be sensitive to their needs and may place unfair expectations on them. It is not uncommon for a sarcoidosis patient to suffer from depression, often due to a lack of support and understanding and the constant battle to keep going. Sarcoidosis patients frequently have limited sources of energy to get them through the day.

When I first flew to Denver in 2007 to meet my current doctor she said to me tongue in cheek after reviewing my lung x-rays, “Well, you’ll probably never run a marathon but I think we can definitely improve your quality of life…” and she did, and no, I cannot run much at all really! But in June 2011, my sister will run that marathon for me!