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Sanctity of The Breath: Living With Sarcoidosis
![]() It was 1979 to be exact, while preparing for major dental surgery, doctors discovered something from a chest x-ray; sarcoidosis. I was 20 years old, in a city away from home (attending Howard University at the time) and I knew nothing about sarcoidosis. After my surgery, I went on with my daily life. The sarcoidois didn’t bother me so I never thought about it much. Then one evening, about a year later..... While riding home suddenly, every time I inhaled I was in pain. The pain was so severe, I tried to hold my breath and I couldn’t move my right arm. I got off the bus and took a cab to the nearest hospital emergency room. I was examined, tested, and x-rayed. The doctor came in and told me I had Sarcoidosis in my lungs. “I thought ... that word again ... but it had been months since I last heard that word.” The doctors, prescribed medication, gave me a referral and urged me to seek medical attention. The referred doctor seemed to be knowledgeable then, but I now know differently. He treated my symptoms by prescribing controlled pain killers instead of the customary treatment (corticosteroids or prednisone). I stayed in and out of a dazed state for months. It was hard to concentrate in school ... I was beginning to worry. Sarcoidosis mimics other diseases and conditions, which can prolong a definite diagnosis for months or longer. Because of this, many sarcoidosis survivors are misdiagnosed and subjected to delayed and/or improper treatment. When detected early, patients benefit from aggressive treatment. During this time, I was a member of The Howard Gospel Choir (a proud second alto) and having trouble holding notes and singing for long periods of time. Frustrated, I began to ask around about sarcoidosis. Believe it or not, at the hair salon, a customer heard I was sick and inquired about my health. “Girl, you ought to go to Howard University Hospital and see Dr. Y., he knows all about Sarcoidosis.” We immediately called and made an appointment. Back then, Howard University Hospital was one of a handful of medical facilities in the forefront for research and treatment of sarcoidosis. Also, at that time, the medical community was not convinced that it wasn’t just a “black disease.” One look at my chest x-ray, Dr. Y. immediately admitted me into the hospital. For over a week, I was treated for Pleurisy and subjected to numerous tests. The tests revealed sarcoidosis in my lungs, liver (asymptomatic) and skin. Dr. Y. prescribed Prednisone and a Proventil inhaler. He then sat me down and started to educate me on this mysterious disease. He gave me articles, held my hand when I cried and told me what precautions I needed to take. Sarcoidosis is defined as an multi-system inflammatory disease that causes the body to form granulomas (clusters of inflammatory cells or lumps) which create scar tissue and block the function of vital organs. Its origin is unknown and it is not contagious. I continued my life as usual but over time limitations became apparent. Thinking back in my early Howard U days, I can remember coughing uncontrollably when I laughed, or having difficulty walking Howard’s hilly campus. I could not party like I used to and would tire easily if I danced. I could not walk up stairs, exert energy spontaneously or tolerate smoking or fumes. Common symptoms of the disease is shortness of breath, dry cough, skin rashes, shin and ankle pain, joint and back pain, chronic fatigue, inflammation, weight loss, feeling of ill health, chest pain, and fever. As time went on, I for the most part had good health. Every once in a while I would have a relapse of pleurisy or a chest infection (from a cold) and end up in the hospital. Over the years, my doctors have had to cancel two spa contracts due to sarcoid flare-ups. My family did not understand because I looked fine on the outside but, I was falling apart on the inside. I wasn’t lazy ... I was tired from chronic fatigue and stress from struggling to breathe. Frustrated, I would keep my family in the dark and not let them know when I was in the hospital. See, no one seemed to understand my plight and I did not have a complete understanding of my own. I got so tired of my friends and family saying “you look well,” while at the same time sarcoidosis was eating up my insides. I was in pain and suffering. As all sarcoidosis survivors experience, perception is our biggest enemy. It is often difficult for family members and care givers to understand the many faces of this disease called sarcoidosis. From 1981 to 1988, I stayed on low to medium doses of prednisone and was always able to keep my weight between 129 and 145. But, my Pulmonary Function Tests began to decline and chronic fatigue had become a normal occurrence. The list of symptoms now included severe swelling of the feet, tearing of the eyes and blurred vision. One evening, while driving (out of the blue) the street signs on the beltway became a complete blur. I went to the doctor and found out that the disease had entered my tear ducts. Prescription glasses were prescribed and after about a year, my eyes were back to normal. Today, my eyes continue to tear. Sarcoidosis can be in a severe state one minute and two hours later be almost undetectable. Symptoms change from minutes to hours, each case is different. It can lie dormant in the body and reappear years later or it can burn itself out and never surface again. Believe it or not it can dwell in the body with no symptoms at all for years and do little damage. But, that does not happen for everyone. By 1990, I was married, 33 years old and going to have a baby. Everything seemed normal at first but then, I just didn’t feel right. My energy level was low and my feet swelled so bad I could hardly walk. When I went in to see the doctor, he asked me if I had ever been told that it was high risk for me to get pregnant. It was then, I was updated on how bad my lungs really were. The baby needed room to grow that I did not have. My blood gas indicated that I had an oxygen saturation level of about 35%, but thank God my baby was fine and received all the oxygen it needed. I was the one in trouble. My pregnancy never concerned me because I had always been advised that pregnancy was good for sarcoidosis. During pregnancy, the placenta supplies the body with an abundance of natural steroids that could send the disease into remission. Well, that did not happen to me! In fact, I have never been in remission. On June 21, 1991, I went into labor two and a half weeks before my delivery date. The medical debate in the delivery room was whether to put me on life sustaining equipment because I could not withstand the trauma of natural childbirth. Despite the fact that I had to take steroids (20 mgs.of prednisone daily) during the entire pregnancy, God prevailed and my son, Onajee was born healthy (by cesarian section) without complications. After my son was born, my condition began to decline progressively downhill. I had 3-4 hospital stays a year (from 1991-1996). As the disease progressed, my body started to show signs of deterioration. Every time I exerted energy, I would start gasping for breath. It would take 2 hours to change the linen on the bed, an hour to vacuum the floor and forget trying to wash my hair. I could only perform one big household chore per day if at all. I was put on a portable nebulizer first every 12 hours and as my health declined every 6, then 4 hours. This went on for over a year after which my course of treatment was changed to four inhalers every four hours. I began to read as much as I could about the disease to empower and educate myself because I was in for the fight of my life! With sarcoidois, you end up with a team of specialists. I have a Critical Care Pulmonary Specialist, a Dermatologist, and Endocrinologist, an Orthopedic Specialist, an Optomologist, an Ear, Nose and Throat Specialist and an Gynecologist. They all communicate with each other and discuss my course of treatment. In 1994, my medical destiny was evolving. My mother had taken ill and I went to New York to take care of her affairs. It was a very stressful time as a weekend stay turned into a 4 week stay. While in New York I used the portable nebulizer and oral medications. I thought I was doing fine but, I forgot ... the stress factor. When I returned to Washington, DC, I was in town two days when I had the worse flare up I had ever had. Back in Howard Hospital, Dr. H. came to my bedside and look at me and said “I want to ask you how do you get out of the bed in the morning?” “How do you make it through the day?” I looked dumb founded, because I knew I was sick but I did not realize how very sick I was. Many people are unaware that Sarcoidosis feeds off of stress. The disease was silently moving through my body wrecking havoc. It had moved slowing, with little symptoms, severely damaging both my lungs and other systems of my body. The “Sanctity of the Breath,” (something so precious and pure, that I had taken for granted) was now being destroyed: my ability to breathe. My doctor gave me and ultimatum, “stop working immediately if you want to live.” Well, I lost it, broke down in hysterics and cried in the hospital, what was I going to do? What about my son? Why is this happening to me? It was also told to have my papers prepared (health proxy, Will etc. ) because I could become severely ill at anytime. There I was with irreversible lung damage from severe pulmonary disease and fibrosis ... “I am too young, this is not suppose to happen to me.” Sarcoidosis often occurs in a mild form. About 80 percent of patients can improve spontaneously and live full lives. But, fatality occurs in 5-10% of cases (especially when the function of a vital organ is affected heart, lung, brain (central nervous system), liver, kidneys). Against the advice of my physicians, I went back to work but I was just existing, my body was in such pain I could not concentrate. The only thing I had going for me was a well trained staff that could pick up the slack. I did not do well and was exposed to cigarette polluted air daily. I finally got the message and was declared permanently disabled in February 1995. Sarcoidosis had severely scarred both my lungs, progressed to my airways and left me with about 28% of combined lung volume. My doctor urged me to speak with my family so I leveled with them and told them exactly what was going on. Today, they are more educated about the disease and try to help me as much as they can. They are extremely supportive but the real deal is they still have problems understanding this disease. I took inventory on my life, and started to build a better support system of family and friends. Today, at age 43 my Pulmonary Function Tests barely register on the monitor. I am fighting severe restrictive lung and obstructive airway disease and I haven’t slept flat in years. My skin aches from painful granulomas and severe shin and ankle pain (erythema nodosum; painful nodules under the skin along shin, ankle, thighs and forearms). The joint and back pain is so severe, I sometimes have to walk with a cane. Other symptoms I experience are night sweats, daily fevers, severe swelling, shortness of breath, chest tightness, shooting pain almost anywhere in the body especially the spine and mid/lower back and chest areas, sinusitis, severe headaches, diarrhea, gastrointestinal complications and cardiac-hypertension. If the inflammation is in the tissue just a hug can be extremely painful. Now, it is extremely difficult to tell if the pain is coming from the disease or side effects from the prednisone. I try to keep a smile on my face and my mind on the positive. Although, prednisone (the preferred drug of choice) has been known to work wonders, side effects from its use are almost similar to Sarcoidosis making treatment tracking difficult. I have tried other experimental drugs but my body rejected them. Others have been excluded because of the current condition of my body. The best course of treatment for me would be a lung transplant. I have not been assessed because of the weak condition of my body but, I am hopeful that my body will one day be strong enough. By 1999, I developed gallbladder disease and intermittent pancreatitis. Pending gallbladder surgery, I asked my doctor what safeguards were available to me to keep me alive (because of the high risk of complete respiratory failure). He responded with a profound statement, “it would depend on how much faith you have.” At that moment, for the first time I experienced fear to a degree I did not know existed. What an awakening ... I thought I had unmoveable faith! My terror didn’t last long, I got on my knees and got myself together .... quickly. I have since that moment, made it a priority and dependant upon my existence to live by faith, never allowing anything or anyone to obstruct my personal relationship with God. I am thankful for a connection above, a caring family and a great support circle of friends. It has been two years, and surgery is still pending! Hands stretched to the sky, I am ready for whatever God has for me. I will never accept sarcoidosis as being a part of me nor resign myself to it. I believe I am next in line for that miracle that will release me from this suffering. I refer to Sarcoidosis as “the disease”; because it is not my disease, it is my diagnosis. What hurts the most is there are thousands of people walking around with Sarcoidosis who don’t even know they have it. According to the National Heart, Lung and Blood Institute (NHLBI) statistics indicated that in 1994, 5 in every 100,000 whites have sarcoidosis compared to 40 in every 100,000 African Americans. African American women not only contract the disease twice as much as men and tend to have a higher percentage of chronic cases. Research funding is almost non-existent. Many survivors can not file disability because the social service community does not understand the nature of the disease and its effects on the body. So, they are turned down or by the time the disability is granted they are seriously ill or terminal. Our struggle of the sarcoidosis community is gaining momentum. The sarcoidosis community realizes that sarcoidosis has quietly aligned itself to be the plague of the 21st Century. We must meet this disease head on. This is our time!
This article was written in honor of the sarcoidosis community so others may be enlightened and moved about sarcoidosis. I have dedicated my life to promoting awareness of this disease and will fight as an advocate to give sarcoidosis a voice in our world, our community, our government. Linda D. Lanier is the founder of The Sarcoidosis Awareness Network.
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