A Sarcoidosis story

---

Here’s my story of living with Sarcoidosis.

I was diagnosed with Sarcoidosis in February 2000. My occupational history consists of 29 years of service BASF The Chemical Company as a chemical plant process operator and 10 years as a professional firefighter for the city of Baton Rouge, LA.

On April 15, 1997 at 15:50 we experienced a massive explosion at the chemical plant production unit where I was employed. The ceiling collapsed in the control room building where we were assembled causing a huge dust cloud that filled the building. The dust consisted of ceiling tile, fiberglass insulation and aluminum sheeting. Upon responding to the situation outside I discovered a sump overflowing and emitting toxic vapors consisting of these chemicals - Ceiling Tile dust - Fiberglass Insulation - Aluminum Sheeting dust -  50% Formaldehyde - 4 Types of alcohol(Methanol, Propanol, Butanol, Propargyl - Sodium Hydroxide (Caustic Soda) - Acetylene Gas - Hydrogen Gas - Copper Acetylide Catalyst - Nickel Catalyst. The worst probably being the 50% formaldehyde solution. Symptoms started 2 hours after the explosion with a dry cough. When going to bed I could not breathe when lying flat on my back. Chronic cough continued with dyspnea and fatigue. 

Initial diagnosis

I reported to plant doctor the day after the explosion and after performing chest x-rays and breathing test I was diagnosed with irritated airway. I was given two inhalers and told I would be fine in a couple of weeks. This did not happen. I went to my pulmonologist who after chest x-rays and PFT’s said I was in the early stages of pneumonia, given meds and told it would clear up in a in a couple of weeks. This did not happen. About 2 1/2 months later I went back to my pulmonologist and after chest x-rays and PFT’s I was diagnosed with the early stages of pneumonia again, put on meds and told I would be better in a couple of weeks. After another 2 -3 months I went back to the same pulmonologist and again diagnosed in the early stages of pneumonia.

Tissue biopsy

The following year in 1998 I discovered a lump on my left testicle. Had it biopsied and the doctor said great news you don’t have cancer. I was relieved. In the meantime I started having frequent nosebleeds that progressed to severe nosebleeds. PCP finally referred me to an ENT who after a CT scan recommended surgery. She stated that I didn’t have a normal sinus. In 2000, surgery was performed and the doctor stated the biopsy report came back with a finding of non-cancerous legions. There was an allergist in this office who read the report and asked the doctor did she give me the biopsy report and she stated yes I informed him that he didn’t have cancer. He asked her, well did you inform him of the Sarcoidosis and she stated the what. This is when I was told that I could possibly have Sarcoidosis. I found an article online 3 years after the testicular surgery that  pulmonary doctor had written while he was an intern about sarcoidosis and the testicle. My pulmonary doctor requested the biopsy report from my urologist and it read non-cancerous legions but non-caseating granulomas consistent with Sarcoidosis. This really scared me, that 2 specialist did not know about this illness.

Definitive diagnosis

I was referred back to my pulmonologist who performed chest x-rays and PFT’s. The same spots that he had seen on previous x-rays were still there. After tests for TB and Wegners Granuloma came back negative, I was diagnosed with sarcoidosis.

Treatments and evaluation 

By the time I was diagnosed I had lost about 40% of my lung capacity. I was immediately placed on 80mg per day of prednisone and two inhalers. This side effects of the prednisone were, avascular necrosis of both hips and glaucoma and cataracts in both eyes. I averaged 80mg of prednisone a day for 3 1/2 years. I’ve been on over 30 different medications since being diagnosed. I had both hips replaced before I was 48 years old and have had cataracts removed and stints for glaucoma placed in both eyes. In searching for the most knowledgeable doctors on this illness I ended up in a research protocol at the NIH and I also had an evaluation done at the National Jewish Health Center. It was at the National Jewish that I was recommended for the use of Remicade. I started on Remicade for the sarcoidosis in February 2006 and it was truly been a god sent. I felt better than I had felt since being diagnosed. I am not as fatigued and my breathing test are significantly better especially the diffusion and the aches and pains are not as severe. Presently I am still on Remicade but the fatigue issues And some joint pain have reoccurred.

 Effects on life

The effects of sarcoidosis on my work life were devastating. I had to retire at the age of 47 because I could no longer perform the duties of my job. The effects on my family life were more devastating. I was very active in my son and daughter’s personal, academic and athletic life’s. Because of the breathing difficulties, fatigue and orthopedic problems I could no longer be as active in their lives.

 The Mission

Since being diagnosed 3 years after symptoms started I made it a mission to learn as much as I could about this illness. In 2009 I started the Sarcoidosis Awareness Foundation of Greater Baton Rouge to give patients, family, friends and caregivers a place to come and learn about the illness and also meet other people who has the illness. Seeing the need for research for this illness I started The Sarcoidosis Awareness Foundation of Louisiana, Inc. in 2012 whose mission is to promote awareness, education and research for Sarcoidosis. Any chance I get to speak about Sarcoidosis I welcome it. We need to shout about it to get attention.