About the Disease
Legionnaires' disease is a severe, often lethal, form of pneumonia. It's caused by the bacterium Legionella pneumophila found in both potable and nonpotable water systems. Each year, an estimated 10,000 to 18,000 people are infected with the Legionella bacteria in the United States.
It is not uncommon for patients with Legionnaires' disease to be admitted to the intensive care unit. Some will suffer long-term impaired health-related quality of life. A study of outbreak survivors showed persistence of fatigue (75%), neurologic symptoms (66%) and neuromuscular symptoms (63%) in months after an outbreak. See Share Your Story for a first-hand account of the severity of this disease.
Share Your Story
—Carol, age 54, Borås, Sweden
This is the first time I have tried to write something like this and I find it very difficult. Before I had Legionnaires’ disease, I was very good at writing, spelling and grammar but not anymore.
It has been a year and 8 months since I contracted Legionnaires’ disease.
In 2011, while enjoying the holiday feast on Christmas Eve, I started feeling ill. At first, I thought it was the food and hoped it would go over quickly. However, shortly after dinner, I started feeling bad and came down with a high fever. I stayed in bed the next few days and slept most of the time. Each time I awoke, I felt worse.
After an appointment with the local health clinic, I was sent home with a diagnosis of pneumonia and given antibiotics. But over the next couple of days things got worse. I slept most of the time and when I awoke I had stomach pain, diarrhea, headache, and extreme thirst (just to name of few symptoms).
I slept on the couch because it was closest to the bathroom and kitchen. It was difficult to walk; I easily got out of breath. Then came hallucinations and confusion.
When I awoke, I wasn't really sure if I was awake or not. My thoughts were sharp, in the way when you know you are awake, yet the ceiling began to paint itself. I stared at the wall in disbelief, how could this be happening? It was very beautiful. I watched as almost the entire wall was filled with beautiful flowers of gold and green. I thought to myself, this is what it must be like to be on drugs.
Then, I started talking in my sleep, just like I was fully awake. I could hear my own voice but couldn't recognize what was happening or what I was saying. It got difficult to understand what was real.
Sometimes I was in focus and knew what was happening; other times everything was strange and blurry. I was scared, very scared. I didn't want to tell anyone because I thought they would think I was crazy.
It got to the point that I couldn’t walk without getting extremely out of breath, so I returned to emergency room where it was clear I was very sick. The medical team responded quickly even though they weren’t sure what was wrong. I was lucky enough to be seen by a staff physician who suspected I had Legionnaires’ disease.
He gave me an antibiotic immediately and ordered an x-ray of my lungs. The doctor was so concerned that he pushed my gurney down the hallway while my fiancé ran behind. I started coughing and couldn’t stop and was told I started turning blue. After the doctor stuck me in the hip with a syringe, I started breathing again! I started coughing again while they were taking x-rays, and the same thing happened.
I was rushed back to the Intensive Care ward and a whole crew of doctors and nurses took over immediately. As I was going in and out of consciousness, they connected me to machines and inserted lines in both arms and in the neck.
After I awoke, I told myself nothing else mattered ... just to breathe.
But the hallucinations continued—and they weren’t pleasant. While looking up at the ceiling I saw bugs crawling inside the lights. I knew it was impossible, and I realized I was hallucinating.
It took a couple of days for the antibiotics to work and my fever to start going down. I was on oxygen and the mask aggravated me. But, it didn't matter because I was still alive. For me dying was not an option, I was determined to fight it with all I had.
Slowly, I started getting better. After a couple of days, I could finally look around my room and see what it really looked like. My mind was clearer, but my body had much more healing to do. It was still very difficult to walk. Little did I know, it would take months to start walking "normal" again. Not only was it difficult to walk, but my brain felt like it had to learn to function all over again.
When I came home from the hospital, I felt like a newborn baby. Food tasted like it never tasted before. At first, I had no pain in my body at all. This would change very quickly. The pain became excruciating and it was almost impossible to go to the bathroom. Then, I felt pain in my back. It spread to the right side and after a few days was on the left side too. At times, it was too painful to breathe. I went back and forth to the clinic where they took numerous tests, but the tests came back negative.
I felt like my body was melting away. Exercising was not an option. Even though I tried walking on the treadmill many times, I could only last five minutes. I pushed myself hard to get better but it didn’t matter how hard I tried. My body would recover at its own pace and my brain could not influence it. This was extremely frustrating.
In the beginning of my rehabilitation, I focused on my physical well-being. And after a couple of months, I started back to work and using my brain. The doctor suggested I start back slowly. So I worked for a couple of hours a day for the first week, then four hours a day the second week. My brain didn't function well at all. I couldn’t remember things. When my boss told me how to do something, I would often forget and need to ask the same questions many times.
Several times the pain in my chest made it hard to breath. I believe it was related to stress. Every time something got stressful, these symptoms developed. It took a time to realize it. My attention span was next to nothing.
Today, I’m much better and I’m thankful for kind and caring supervisors, along with friends that were very understanding.
My chest pain is almost gone; I can exercise pretty well, too, even though up stairs is still a problem. I still have some memory problems. There are times when I cannot see things. Sometimes when I read, letters in words are switched around or the end of a sentence or a word is missing. But after I go over it a couple of times, I can see it.
Concentration is still a problem. Before I was ill, I was the kind of person who could learn things after doing them once. Efficiency was my middle name. Things were never hard to learn and I always did well at what I attempted. Unfortunately, I’m still a long way from being myself again. Sometimes I wonder if I will ever really come back.
I am also extremely clumsy and this frustrates me, because I was never clumsy before!
The Infectious Disease Center in Sweden conducted an investigation and found Legionella at a facility where I had attended the Christmas Eve dinner. It was in the hot tub located next to our room. I was outside and looked at it while they were preparing a bath for others.
They also tested my home and the results were negative. I hadn’t been anywhere else that had a source. Many things went wrong in this investigation, and the facility refused to take responsibility. However, I am 100 percent sure where I caught it. But like so many other LD cases, I believe my case has been swept under the rug.
I’m extremely sad and disappointed. Sad because I don't understand why this has happened to me. Disappointed because the same institutions we rely on to keep us safe, don’t take responsibility. It seems to be a problem all over the world—all one has to do is search the Internet.
Why do they hide cases Legionnaires’ disease? I believe it’s because of money. This disease is absolutely preventable. We don’t need to take inoculations to stop it. We need funds for research. We need establishments to be responsible for the Legionella that can grow in their system. We need to educate the public.
As you can see from my experience this is an illness that is not easily treated nor cured in a short period of time.
- Guilt from not being the dependable person that I was before LD;
- Recognizing, finding and adjusting to my new normal.