Sarcoidosis is such a funny sounding word if you have never heard it before. It is one that inspires a strange look and an audible pause.

In November 1993, my husband, Bob, and I had come down with a really nasty case of the flu. Flu season was bad that year. We were supposed to go down to Kennewick, Washington for Thanksgiving to see my sister and her family. We didn’t make it.

Bob and I got over the flu. Or so I thought. Well, the good news is that at least Bob got well. But I was not so lucky. I kept getting sick.

At the time I was working as a janitor with a large janitorial firm here in Spokane. It was a union job and I was fortunate enough to have health insurance, which was with Group Health Northwest. Yes, a large HMO.

I wasn’t just having flu like symptoms. I had severe breathing difficulty. Fortunately, it wasn’t bad enough to require oxygen. There was also excess mucous from my lungs. It had gotten to the point that I’d be in the bathroom, violently heaving this stuff up from my lungs. My lungs were a little sore afterwards but I was breathing easier. What was hard for me was going to bed and waking up the next morning to find it covering my face and even some in my hair. I literally had to wash my hair daily, which wasn’t easy. You see, I had a bathtub, no shower, and thick curly black hair that was and still is shoulder length. Being sick my tail dragged all the time always fatigued. I had this feeling that I was really ill. This wasn’t going to just ‘go away quietly’. I just knew something was seriously wrong. There was an eerie uncommon feel to it.

I finally got sick and tired of being sick and tired. I made an appointment with Dr. Sayers, who was my primary care physician, after two months of the on again off again illness. I told him exactly what was going. I told him everything. After a blood test and a chest x-ray, I was informed that it was bronchitis. I never had bronchitis before so this was a first for me. He prescribed an antibiotic for me.

Well, the bronchitis continued to reoccur. And everything time it did, I would go back to Dr. Sayers, only to get the same prognosis. One occasion, Dr. Sayers informs that I have the bronchitis but my asthma was flaring up as well. He continues very rudely with “You really should have told us about that asthma thing.” Naturally, my response was “I don’t have asthma and I’ve never had asthma. Are you sure?” I was really getting scared at this point. I had been dealing with this for almost two years at this point.

Dr. Sayers lit into me about it. Some of you have probably been subjected to the song and dance routine that a small minority of doctors dish out about how they’re the doctors and had the eight year of college. “Doctor knows best.”

Needless to say, I went off on him. I lit into with both barrels blazing. My response was that I wanted a second opinion like now, if I didn’t get it I’d go over his head and he had better not talk to me in that manner ever again because I absolutely did not have any qualms about turning his butt in to the administration and escorting him out of the building via the third floor window in the exam room I just so happened to be in. Evidently he believed me because by the end of the week Dr. Noble’s nurse called me to schedule for an appointment.

Well, she (Dr. Noble) was a major improvement. She’s a doctor in internal medicine at Group Health. Really nice lady and seemed to know what she was talking about. She had reviewed my file and we had talked about what was going.

Some of the things that we had talked about included anything that might run in the family, Cystic Fibrosis, and other possibilities like Tuberculosis and Cancer. She had ordered another chest x-ray and blood work, including an A.C.E. level. The test for the A.C.E. level is to find out if it is present and how high that level is, because it’s present, from what I understand, shouldn’t be higher than 50. Dr. Noble called me with the results. Mine was over 100. She suspected a disease called sarcoidosis. That’s pronounced the way it looks. (Sar coy DOH sis.)

Dr. Noble set me up with a referral to a doctor in pulmonology at Rockwood Clinic. I met with Dr. Byrd in December of 1995 for the first time. He’s a sweet, older man who looks like someone’s grandfather as well as a doctor. I like him a lot, even though he shoved a tube down my nose. We setup a time for me to go the hospital as an outpatient for a bronchoscope. What they did was gave the medication in a nebulizer, which is one of those long blue tubes that are used for breathing treatments. This medication was to freeze up my throat. It caused me to cough badly, though. I was also given an anesthetic to put me to sleep. While I was out cold, they put a tube in my nose and put in to my lungs so they could tissue to biopsy.

The next thing that I remember is starting to wake up while the orderly was wheeling me on the gurney to the recovery area. When I fully came out of the anesthesia, I was allowed to go home. I got home via Spokane Transit Authority. I took a bus.

My next doctor’s appointment with Dr. Byrd was in January 1996. I was told at that point that I did have sarcoidosis. He started me on 40-mg prednisone daily. We’ve been gradually decreasing over the years. Currently I take 1 (10-mg) tablet daily. I am also taking other medications for asthma and high blood pressure. But I guess that other than that, I am okay. At least I am still among the living.

Quite a bit of time has passed since I was diagnosed. And a lot has happened since. I am thankful for the support I’ve had. Some people aren’t so lucky.

I keep trying to have a positive and most ofthe time it isn’t hard. But that doesn’t mean that there aren’t down moments. It is possible to live with this.

-- Comments