Living with Sarcoidosis

When it comes to sarcoidosis, it’s a real shame that the professional medical field can’t stop and think for a moment “let’s listen to the patients!” I remember how I had been repeatedly misdiagnosed for four years before finally every medical test came back abnormal. It all started in 1977.

In those days there were days I’d awaken in the morning not being able to walk because of a painful ankle that felt like a sprain though I had done nothing to injure it. Then came sharp pains which I described as feeling as if they were in the bone. By 1979, it seems all hell was breaking loose within my body. There were pains in my hip joints which rendered me immobilized for several minutes at a time and there were still all the other prior pains. They all seemed to disappear as quickly as they appeared.

Things were so bad for me that by 1981 my job performances were so horrible, I was counseled repeatedly. It was in that same year I became deeply depressed that no-one could see how much I was suffering from something not even a doctor could find. I remember saying that the doctors were dead wrong in their diagnoses of me having a weak ankle muscle and despite being ordered to go to physical therapy twice a week, I refused to go. I had a big problem and it was more serious than anyone knew or cared to know.

Then in March 1981 and just twenty minutes before I was due at work, There was this chest pain which was so great that I would lay on the floor unable to breathe for some five minutes. That five minutes seemed like forever as the room became dim and the face of my wife leaning over me grew blurry to my vision.

After the fact you tell everyone you didn’t have time to think anything or of anything. But the reality of it was I thought life was over for me. The most depressing thing about it was I did make it to work on time and as if there was someone who cared I told my supervisor about the episode and when asked if I wanted to go to the hospital, I shrugged it off in the two letter answer “No!” The doctors didn’t care if I died is all I thought.

My behavior and attitude had gotten so bad that I was intolerable and blind to those who did care about my well being. Another month went by before the second episode that chest pain hit. Not as bad but while at work. I remember a co-worker saying “you don’t look so good” with me replying “I think I’m dying, I’m having chest pains. My vision of him was slowly burring out as I gasped heavily just for air. At that point it was reported to my supervisor and I was ordered to report to the hospital. I did so but knew it was useless as by now the pain had again subsided.

To my surprise, three weeks later I was called to the hospital and told that every test, blood, urine, chest x-ray and breathing test had all came back abnormal but even then no-one knew what the problem was. A clue came a month more later from a call to a University Medical School doctor who had heard of a disease called sarcoidosis

I scheduled to have a biopsy performed. I had no idea what they suspected as doctors still had no clue as to what my problem was. Frankly I didn’t care what I had. I wanted the pain and suffering to stop. The biopsy proved to be a match for sarcoidosis

It is imaginably heart wrenching being informed that you have a disease that they know not what causes it and they have no cure for it. I could only think of my wife and infant child at that moment. How they would cope without me. As I pondered that thought the doctor informed me that I wouldn’t die from it. The relief of his words were warm yet I still, in my mind questioned them.

Four years I had suffered pains, felt confused, experienced loss of coordination of bodily and mental functions. I figured “anything impacted so deeply within one might just be more serious than even the doctor knew.” However, my battle seem to be over by 1983 with the help of steroids and a medication called indocine.

By 1987 all signs of the disease had vanished. In that same year my marriage was over and now we had three sons. As my wife and I went separate ways I urged her to have the boys checked if they had ANY pains whatsoever which could not be explained. Despite being told that the disease could not be passed on to any future children, I still had my own doubts and if it could be passed on, I didn’t want my children to go through years of suffering before a positive diagnosis was reached as I did.

I gave their mother and them when they were 18 years of age, all the information I could find online about the disease and repeatedly stressed over and over how tricky the disease was and dangerously deadly I thought it was.

In 2007, my oldest son, after losing a couple jobs because of his performance and lack of concentration, complained to me about problems he was having. Sarcoidosis immediately came to my mind, even before he told me what his issues were. It was just the puzzled look on his face as he spoke. He explained the same symptoms I remembered from 1977.

He said that the doctors found nothing wrong in several hospital visits over a 6 month span and when asked if he told the doctor of his fathers history with sarcoidosis, he confessed that he knew I had something but because he was so young back then, he could not remember what it was. Angrily I called his mother as I felt she took all my words as just being over reaction. For those of you who do not know anyone who has the disease, trust me, we can walk in a crowd seeming as healthy as any normal person in the best physical condition between outbreaks. But well we are far from.

A biopsy proved positive for my son as having the disease. The fact that doctors found nothing on his hospital visits only further impaired his condition. Today is August 11, 2008 and I sit here worrying how my son is with each passing day and wondering if he’ll still be alive to see his next birthday. He has been admitted into the hospital for a week’s stay four times in a two month period. In his first admittance one of his kidneys had been shut down by kidney stones Two weeks later, His other kidney had the same occurrence. After his third admittance he was told that he needed to return to the hospital each week for steroids which were given by way of I-V injections or he would become very ill which is just what happened. His fourth admittance came as a result of a phone call from his doctor informing him that test performed only 2 hours earlier revealed that once again his kidneys were not working properly. On the phone the doctor simply said “You need to go to he emergency room immediately” and that if he had no way to get there they would send someone here to get him.

We live in he city of San Antonio Texas and there are no doctors here who specialize in dealing with the disease. The disease, though misdiagnosed showed up in me at the age of 24 and just as I had thought it might if it did, it showed up in my oldest son at age around the age of 24. So I was wrong. For him it was age 27. My worries are far from over though as I have twin sons as well who are 23 years of age now. In all this I think of the Bernie Mac. You know.., the comedian/actor passed away on August 8, 2008. I knew he had been hospitalized in 2005 for pneumonia I mean “double pneumonia”. Reading the story of his death on yahoo, I saw the word “sarcoidosis” followed by the words “his death had nothing to do with the disease but rather he was once again admitted to the hospital on August 1, 2008 for another case of pneumonia which turned into double pneumonia while he was being treated for pneumonia At that moment I sent a phone text message to my ill son saying one thing “did you see, sarcoidosis has killed Bernie Mac?” He called me the next day asking how I knew. I knew though I had no solid proof.

You must understand this, as with a person who dies from AIDS, it isn’t the disease which kills on it’s own. Most cases of death in AIDS patients, it is pneumonia in which he person dies from. Why? Because pneumonia is a result of the body’s immune system not performing properly or all together, simply shutting down allowing deadly and potential deadly viruses to grow uncontrolled. This is what I immediately suspected in Bernie Mac’s case. I wanted to find further proof that this was exactly what had occurred to this normally healthy 50 year old man and that proof I found as a “bernie mac and sarcoidosis” search in yahoo’s search engine brought up the following:

“Bernie Mac didn’t have to die - pervasive misconceptions about sarcoidosis
The actor and comedian Bernie Mac died today, and it was because of sarcoidosis. … 2 Responses for “Bernie Mac didn’t have to die - pervasive misconceptions …bacteriality.com/2008/08/09/berniemac - Cached”

I fully agree with the words of the article found there and it was just what I was looking for to show to my son as I was still not convinced that he knew just how grave his condition might be for even if his kidney troubles were to clear up, the disease could just as easily attack any of his other organs with deadly results.

It is estimated that over 1 million people living in the U.S. are living with sarcoidosis and don’t know it. With that said, I urged everyone reading this to research this disease online. Knowledge of he unknown is a great tool to have. Not only could it be useful in he future, as the disease can lay dormant for years before it surfaces and it will help understand what those you know who do have it are going through.

For me as of today, I again for he last 7 years have had sharp and dull pains pop up and linger throughout my body organs and spinal system as well as, heart pains and centralized headaches that suggest the disease is within my brain. I hold firm to my words to a co-worker a couple years back that the disease will kill me eventually yet because I am rarely ever absent or late for work, I can’t imagine anyone other than one person believing that I still could have my days numbered.