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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.

 

The University of Pennsylvania is conducting a study examining Legionella’s effect on olfactory function. Dr. Richard Doty, director of the Smell and Taste Center at UPenn, developed a standardized test using scratch and sniff cards to examine individuals’ ability to identify scents. The study seeks to determine whether LD survivors suffer from smell loss and to gain a better understanding of why. It is the first study of its kind to explore this type of neurological effect on survivors.

 

LD survivors can participate in as little as 1 hour from home. Participation requires two simple steps: a survey about LD diagnosis and medical history which is completed at home and mailed in, followed by the scratch and sniff test, also completed at home and mailed in. If you or someone you know has been diagnosed with Legionnaires’ disease, contact Mark Potter at the University of Pennsylvania to find out more information about participating. Click the link below or call 215-662-6580.

 

Legionnaires' Study Recruitment Flyer

 

See below for first hand accounts on the severity of this disease.

Share Your Story

If you or someone you know has a first hand account of Legionnaires' disease, we want to hear from you.  Please share your story to help promote awareness of the severity of Legionnaires' disease. Submissions are edited for length and clarity.

Share Your Story

I am so deeply grateful to my Swedish family for their support, the doctors and nurses that provided me with excellent care. Especially the emergency room physician that suspected LD and began treatment immediately. Without him, I would not be here today.

 

—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.
I soon realized that the only recommended therapy was to accept the residual effects and learn new methods to do old tasks. Hall of Fame Coach John Madden once said that there is a little bit of just not done yet in all of us. This idea has motivated me to work toward my “new normal” by staying physically and mentally active.

 

-- Eric, age 64

 

In August 2012 at the age of 64, I contracted Legionnaires’ disease while on a business trip in Chicago. Five days after I returned home I began to experience a feeling of malaise, and on August 15th I developed a fever of 102°. My wife took me to my primary care physician who sent me home and told me to take Tylenol; that evening my fever spiked to 104°. My wife called my PCP and advised him of the situation requesting that he send an authorization for a chest x-ray and an antibiotic.

 

I began a treatment of Levequin. The x-ray was positive for pneumonia. The fevers continued throughout the next three days, which included the weekend.  Severe headaches and chest pains set in. My lungs were full of fluid and I found it difficult to breath. The headaches were location specific from the right side of my head to behind my right eye and over to the middle of the right side of my neck. They lasted from five to seven hours a day.

 

I started coughing up blood. Even though my sputum was bloody, I didn’t go to the hospital because my wife Barbara was concerned that my immune system was too compromised and I would be prone to other infections at the hospital. On the sixth day of fever and headaches, my wife heard a report of a bird flu outbreak in the Midwest.  She called my doctor and suggested that he order a blood test.  The blood test was negative and there was no test for Legionnaires' disease.

 

On August 22 my Secretary received a notice from the Chicago Department of Public health advising of an LD outbreak at the Hotel where I stayed. My PCP was notified of the notice and he called the Lab and asked them to run a blood serology test on the remaining blood that was drawn when I was sick. This is not an appropriate test for LD while the bacteria is active.   The result was negative. A week later I felt somewhat better but quite fatigued.  I reported to the doctor and after reading the Notice from the Chicago Department of Public Health said there was nothing more to do. He suggested I go home without further treatment or testing, as my blood serology test was negative. I told him the test he was relying was wrong, and after calling the lab he ordered a second test based on new blood.

 

The test came back positive for Legionnaires’ disease.

 

Over the next four months I realized that local doctors in my town had little to no experience with Legionnaires’ disease. On the advice of friends and others, I began to seek care and guidance from specialists at the University of Pittsburgh Medical Center, and Johns Hopkins Medical Center in Baltimore, which was closer to home.

 

It wasn’t long after the headaches subsided that I noticed I had aged significantly. I lost the ability to do many things I could do before. My memory was foggy.  I had grown easily distracted and forgetful. As a lawyer, I used juggle many tasks at the same time, but now I could only concentrate on one thing at a time. I had to think out each step of every process that I undertook. This included things as simple as feeding the dog to more significant matters like writing a letter. I began to notice significant changes in my cognitive functioning. While I expected that for at least a number of weeks I would be physically fatigued I had never expected mental fatigue to be so pervasive and long lasting. Even now when I attempt to think through problems or read too long I often have terrible headaches.

 

I’m constantly losing things. I must put all of my belongings such as keys, wallet, change, glasses, checkbook, Tylenol, etc. in a bag so I can find them when I need them next.  Everything must go into this bag throughout the day and especially when I come home or I will misplace them. And I must store the bag in the same place when not in use.  I often find myself lost while driving in the car. These forgetful events happen frequently throughout the day.

 

I must constantly write notes as an idea comes into my mind or it is forgotten forever. I find myself walking into a room to do something and having no idea why I went in there when I arrive. I often go to get an item and come back with something else. Last night I was making a salad and I cannot tell you how much time passed, but at some point I stood wondering what I was looking for in the refrigerator. Now some people may say, that happens to me. My reply is, yes, but not all day long.

 

After a few months of living with these aftereffects, I suspected that at 64-years old the life as I knew it was gone and I was entering a new stage—a “new normal” for me. Still, I needed to know the cause. Could pneumonia have impacted my life so dramatically or was it Legionnaire’ disease?  I consulted with and infectious disease doctor who compared my blood seriology results from blood drawn while I was sick to the blood test drawn 13 days later. He noted that the antibody spike was significant and high in that the first one was taken while I was sick (Negative), and the second one taken shortly after I recovered (High Positive).

 

I have no idea what my “new normal” will be. Nor do I know how long it will take until I get to astatus quopost-Legionnaires’ disease state. I’m engaged in a behavior modification therapy program with a neuropsychologist in my hometown to help me deal with:
  1. Guilt from not being the dependable person that I was before LD;
  2. Recognizing, finding and adjusting to my new normal.
That means accepting the reality that it may take more time to do the things that I did before; developing new techniques to perform those tasks; and creating new meaning and purpose to my life.

 

PCPs, ID specialists and researchers need to realize that Legionnaires’ disease doesn’t end when the infection is resolved.  It is a disease with a residual syndrome that is a persistent and troubling companion. For months I searched for a way to get back.  For months there was little in the way of guidance or counseling. If I broke a bone or tore a muscle there was a course of recommended therapy that would make me come back stronger. But for Legionnaires’ disease no therapy exists that will reverse the side effects.

 

I soon realized that the only recommended therapy was to accept the residual effects and learn new methods to do old tasks. Hall of Fame Coach John Madden once said that there is a little bit of just not done yet in all of us. This idea has motivated me to work toward my “new normal” by staying physically and mentally active.

 

Through all of this I learned how important it is to communicate with others who have gone through this experience. And that it's important to recognize that you have more friends than you realize, and that they are willing to lend a hand to help you.

 

For those of you who have survived Legionnaires' disease and are trying create their "new normal" I say, Do your best to remain positive at all times and at all costs because disappointment can manifest itself in painful, crippling ways, if left unchecked. Rather than see your glass half empty see it more than half-full. Consider that you had three good days this week, rather than four bad ones. Remind yourself that an 80% recovery is better than a 20% loss. Lean on your family, friends and colleagues who truly care about you and can make you smile.  Keep up your sense of humor. Recognize that there is more to life. Seek a meaningful purpose every day. Get counseling and professional advice and guidance and above all else seek out others who have similar conditions. Support each other and most of all always remember that you are just not done yet.

 

UPDATE: A few months ago,  Dr. Stout introduced me to a survivors group in the Netherlands. The have provided me with a great deal of information. Many of their members are 12 year survivors and today suffer from many of the after affects of LD.  Most, young and old have stated that they are still not the same person they were before LD, complaining about the very same things I reported to doctors two and a half years ago:  inability to focus and multi-task, confusion, general sadness for example. You are not alone.
I am a maintenance supervisor for a company in Michigan with a boiler/chiller HVAC system, or a water system. The system was installed in the late 1960s for space and efficiency reasons. Before I contracted Legionnaires' disease, it was my responsibility to walk through and inspect all boiler/chiller rooms and the piping that led through the property.

 

In December 2009 at age 46, I was rushed to the hospital and admitted into intensive care where I stayed for a month. I was diagnosed with Legionnaires' disease. For a while, the hospital staff didn't know if I would survive. I lost my job  for " failure to return from leave." if you can believe that.

 

Fortunately, i was reinstated after my termination. Now, I can 't do a third of the things I used to do.  I have severe joint and muscle pain, fatigue and memory loss. I am on two heart medications, one anxiety medication, depression and pain medications. At this point, I don't see any light at the end of the tunnel.

 

This has taken a heavy toll on my family. The quality of life I once had is gone. I feel so bad for others in my situation as you have all heard "your looking good "  Right ! It's very hard to explain to someone who doesn't look past your physical appearance not to see that you have fallen apart on the inside.
In 2011 I went for a surf on a cold December morning in the north sea.

 

I woke up that morning feeling absolutely fine however, after I had spent about 40 min in the water I felt dizzy, ill and generally horrible I remember coming out the water and dragging my board up the beach and into my car. The first thing I noticed was that I was cold really cold. Now I'd surfed many times in winter and it had never bothered me like this before, so I knew something wasn't right. I couldn't even function to drive home so my wife drove.

 

Upon arriving home I noticed that I just couldn't control these shakes that were almost like rigors related to an infection. I joked around saying I probably just got hypothermia. So,  I went to bed to try and heat up. About four hours later, I woke up and according to my wife I looked terrible, pale and was sweaty. I felt as I looked.  Still shaking I stumbled to the bathroom and started vomiting bile. Afterward, I took my temperature and it came back at 39.9 C.

 

It was clear that there was an infection brewing someplace but where? As the night went on my symptoms worsened.  A duty doctor was called out and took my observations. My temperature was spiking this time to 41.2 C.  I was expecting to be admitted but the doctor, for some reason, did not admit me. He took blood and left. Four hours later he returned and took more blood. After he left  I went back to bed.

 

I find it extremely hard to remember the rest of my illness but I will tell you guys what relatives and medical staff told me. Two days passed with these symptoms. I was still at home and had been giving antibiotics containing penicillin.  After two days of taking these they were stopped becaiuse I couldn't stop itching, my hands were swollen, and I was covered in red blotches. They assumed I had a sensitivity or an allergy to the drug. After another reassert it was a apparent that my lungs were now in trouble. When I exhaled you could here the fluid bubbling loudly. it sounded like blowing bubbles in milk. Treatment for pneumonia was now under way. I think it was clythromisen (apologise for the spelling ). My blood tests showed it was a definite mycoplasma pneumonia.

 

Two weeks passed and I was still in bed, still on drugs, and still no admission to hospital. After another visit to the docs,  he found there was next to no change in my condition. I was loosing weight, confused, nauseous, vomiting, and my stool was loose. i was just broken.  I went from a fit soldier to getting out of breath just walking up three stairs. So after gaining more of a history, the doctor worked with the infectious diseases specialists to find what could cause the symptoms. They decided to test me for Legionnaires' disease.  Just to be sure a doctor from my old job (army) also took tests. Both sets came back positive for Legionnaires' disease.

 

One and a half months after the surfing incident, I started getting treated for this infection. All treatment was carried out at home. I'd feel great for an hour then crash and burn for four house. About two months later, I felt exactly the same so they sent me to the hospital for two days for an antibioti IV. It worked but was a long process. I spent the next two months popping in and out of hospital for check ups and repeat bloods tests.  After about six months from my surf,  I was feeling better but was told I would have lasting damage to my lungs and other areas.  When the tests came back the infection was gone, just the antibodies were present. I wanted to celebrate but had no energy.

 

After contracting Legionnaires' disease and getting treatment for it,  I now have left sided chest pain,  asthma caused by the infection, IBS and burnt villi in the bowel. A  colonoscopy showed chronic damage to the bowel lining due to oral antibiotic I was treated with a through a drug trial called vsl#3 for this and it did help but now I have a dodgy tummy about three times a week. I sometimes pass blood. My ECG has shown artifact due to having pericarditis as a result of the infection spreading.

 

I still have these symptoms daily and manage them with drugs but I'm aware I will never be 100% again.  I'm currently at work with a chest infection and getting my blood checked weekly to avoid a repeat of last time. Where did it come from ? It was thought I got the infection from a lorry's air tank that had sprayed water in my face as I was working on it. During the surf I brought it out of its incubation period .
My story begins on May 24, 2012. I came home from work with a slight sore throat and a cough.I am used to pushing myself so I didn't think that much about it. I went to work Thursday and Friday. By Friday night I started developing such a high fever that I can barely remember what happened until I woke up in the ICU on June 14th.

 

My partner, Ray, told me that he put me in the shower and tried to get me to go to the hospital on Saturday morning but I refused. After I became even more incoherant so Ray took me to the emergency room. He told me that I signed papers and spoke with the nurses--none of which I can remember. My fever had reached 105°; lucky for me a young intern suggested testing me for Legionnaires' disease.

 

By the time the x-rays were read I was intubated and put into a medically induced coma. Things went from bad to worse. My lung collapsed, a chest tube was inserted, and I went into septic shock. This is when the doctors advised calling all my family to come say goodbye. I was put on dialysis, and had an allergic reaction to two of the antibiotics they had me on.

 

When I woke up on the 14th of June in ICU, I had no idea what had happened to me. I could barely move my hand to my mouth, I was so weak. I was transferred to rehab on June 19th and was there until July 19th. When I went home I had to continue PT and I had a personal care attendant for two months.

 

I believe I got this disease from the building that I worked in. It was a very hot and wet spring in 2012 and our building had a flat roof and had been leaking since we moved into it in 2006. Of course my boss denied I got sick from the building because he was hit with a big fine from OSHA two years before and I think he thought he would get hit again even though he was renting the building.

 

I was with this company for almost 11 years; hardly ever missed a day and I was on call 24/7. I had no income at all five moths and had to use all our savings. I did eventually get a lawyer who at least was able to get me workers comp. for the time I was out of work but they made me sign off on medical. I then was able to collect unemployment because my employer had to hire someone for the office. My UE benefits are done on Oct. 15---I do not know what I am going to do then. Jobs are tough to come by and at 58 not many will hire me.

 

I too have trouble with memory, spelling, comprehension, walking, fatigue, and muscle pain. I developed medically induced cataracts in both eyes and had to have surgery. I noticed a "growth" on the left side of my lower back when I was in rehab that they decided to "watch and see." Of course it got bigger so I had surgery on July 1, 2013 to have it removed. It became badly infected. I have to say this has not been an easy journey.

 

I would love to try and educate both the public and the doctors who seem to think that once the pneumonia is gone you are "cured." This is not the case! I am finding that this disease has taken a big toll on my health and quality of life.
I’m extremely blessed that my mom is alive. I fully believe that if we had waited one more day, she would be gone. If it weren’t for the thorough evaluation and tenacity of Dr. M. and his team, the ending to this story would be completely different.  We are by no means out of the woods yet. In fact I am not completely confident that she will ever fully recover. However, reading the stories of my fellow contributors has provided me a sense of direction to advocate for her continued improvement.

 

--Kim, Michigan
 

 

On June 13th, 2015 my mom called me and said that she was not feeling well and thought that she might have the flu. By Wednesday evening she emailed me and shared that she wasn’t feeling any better. However the spelling, syntax, and punctuation of her email was completely out of character for her. I called her several times that evening and was unable to get a hold of her. Thursday morning I was finally able to get her on the phone and noticed immediately that she was slurring her words and not making any sense. I asked her to call her PCP to make an appointment for the next day. She was able to make the appointment but this did not put me at ease.

 

I called a friend of mine who is an RN, and asked her to stop by and check on my mom. When my friend G. arrived at the house, the doors were locked and there was no answer to the doorbell. G. called me and asked me how I would like to proceed. I instructed her to get into the house by any means necessary. When G. was finally able to gain entry she found my mom in bed, gray in color, short of breath, with a high fever. G. called me back and reported her findings and recommended an immediate evaluation.

 

My mom was taken to the ER via ambulance, and arrived there by 4:00 p.m. I quickly loaded the car and started driving north to get to the hospital. The ER doctor diagnosed my mom with dehydration due to the flu. Her potassium, sodium, and electrolytes were dangerously low. Her kidney function was minimal and she was struggling to breathe. They connected her to a cardiac monitor, IV's, and oxygen, and immediately started pushing fluids.

 

By 11:00 p.m. my mom was admitted to hospital where she was assigned to Dr. M. He ordered several tests including a chest x-ray, blood cultures, CT scans, and others. She was then diagnosed with bilateral pneumonia, and sepsis. She was spiking high fevers, and her vitals were like a roller coaster. My mom was still experiencing severe diarrhea, and her color was gray. She was confused and sleeping constantly. Dr. Medieros was diligent in finding the root cause of symptoms. He ordered the test for Legionnaires’ disease, and it came back positive.

 

He placed her on a 10-day course of IV antibiotics that resulted in a skin yeast infection that covered 60% of her body. After 11 days in the hospital she was released. My mom now has visiting nurse, as well as a physical and occupational therapist coming to the house on a daily basis. She is still rather confused and frail. It seems that my mom has aged 20 years in the past month. Additionally, she has lost almost 35 pounds and has no appetite whatsoever.

 

Dr. M. was extremely candid with me about the longterm prognosis of her newly diagnosed condition. She can potentially recover fully in 12 to 18 months; however, she is at high risk for a secondary infection. Any type of severe cold or flu could take her right back down to where she was when she was first admitted to the hospital, especially before her lungs fully recover.

 

I’m extremely blessed that my mom is alive. I fully believe that if we had waited one more day, she would be gone. If it weren’t for the thorough evaluation and tenacity of Dr. M. and his team, the ending to this story would be completely different.

 

We are by no means out of the woods yet. In fact I am not completely confident that she will ever fully recover. However, reading the stories of my fellow contributors has provided me a sense of direction to advocate for her continued improvement. Thank you Legionella.org for providing this platform to share our stories and educate each other in the treatment and expectations of future.
We are forever grateful to the University of Minnesota team. Had the bypass machine not been available , Steve would not be here today. It is frightening to think you can simply breathe this in unknowing and die.

 

-Steve, age 64

 

 

My brother Steve and several of his coworkers were sent home from work on a Wednesday with flu-like symptoms. By Saturday evening a neighbor called to say he was in immediate need of medical attention. We arrived to find he had extreme difficulty breathing and was so dizzy and weak he could not walk unassisted.

 

At 11 p.m. we took him to ER. X-rays found his left lung was completely filled with pneumonia. He was admitted and began antibiotics. When they asked for permission to help his breathing and heart if needed the reality that we may actually lose my brother hit. By 6 a.m. Sunday he was intubated and the nightmare began.

 

Medications were not working he was in medically induced coma on paralytic drugs. He was unresponsive and we were in shock. When he worsened, they did a lung culture to see if he had lung cancer or Legionella bacteria, which takes 48 hours to culture.

 

We were advised that if there were any other family members they should come to see him say what needed said. Family and his closest friends, one who is a Pastor, came and prayed. Things were grim. He had gone from walking his dog Tuesday to deaths door on Sunday. He had a small simple life, work, grocery store, church and walks with his dog; how could this be happening?

 

Monday there was still no change so they decided to reposition him onto his stomach to jar his lungs since the right one was now being affected, but the flip created havoc. Immediately it was decided that he needed to be transferred to U of M Hospital, which had a lung bypass machine. It was questionable if he would survive cath lab and transfer. On arrival, he was put on Eckmo (lung bypass) and placed in the ICU.

 

Tuesday night the culture showed Legionnaires Disease. This was a battle, but he had told them do whatever is needed because he was not ready to go.

 

Wednesday our research began. We contacted the CDC and Health Department but were told unless more than one case is reported there is NO investigation, even if a death occurs. Steve remained critically ill, on bypass for over two weeks and remaining intubated with an unsuccessful extubation. He was re-intubated the following day, then his heart stopped. He was revived with chest compressions. Rehab was happening even in that condition with faith and prayers.

 

Thanks to the intense skilled care of his nurses and doctors and by God’s grace, Steve pulled through. He was in a critical care ICU for five weeks. He had hematomas in his neck and leg and was transferred to general care floor because his heart rate was too high. He had a procedure to shock his heart which resulted in a lower rate, allowing his release to an Acute Rehab hospital where he had physical and occupational therapy for three hours each day. He was highly motivated to recover and get home to his life. Rehab was successful, and he was released for home care after ten days.

 

He will be on some medications for the rest of his life after this. Steve lost 33 pounds from this. He has been home for nine days now. He is weak and uses walker but is gaining strength every day.

 

Since there were no other documented cases associated with his there will be no investigation. We will never know where this was picked up. This has hit him hard physically, emotionally and financially with no one to take responsibility. His co-workers recovered from their "flu," however they were in 40's and did not have compromised lungs. Steve is 64 years old and has been a smoker most of his adult life.

 

Where his future goes is uncertain; we know he is months away from hopefully full recovery. His doctor said he is fortunate to have survived this without memory issues. Our family went through HELL for days, never leaving the hospital followed by weeks watching and waiting.

 

We are forever grateful to the University of Minnesota team. Had the bypass machine not been available, Steve would not be here today. It is frightening to think you can simply breathe this in unknowing and die. Even more frightening is the policy of the Department of Health!
It has been 9 years now, and I'm grateful for each and every day I'm alive and get to spend wit my son, no matter how painful.  

 

 

-Marcia, age 43  

 

 

I was a 43-year-old single mom of a 7-year-old son when I contracted Legionnaire's. We had just moved in with my dad after the passing of my mom and I was setting up to work from home doing medical transcription. I came down with a dry cough, fever, and was overall not feeling well. My first trip to Urgent Care they wanted to do x-rays but there was an hour and a half wait and I felt like crap, so I asked for a prescription for cough medicine and went home. The next day I couldn't catch my breath when I was carrying laundry up the stairs.

 

I drove back to the Urgent Care, only about a mile away, and when I got to the check in I was gasping. They immediately called for a nurse, got me a wheelchair, albuterol inhaler, and roomed me. The same doctor as the day before came in and apologized for letting me leave the previous day. He used the portable x-ray and said it was the worst x-ray he had ever seen. An ambulance was called and I was taken to the hospital.

 

By that point, my adrenaline left me and I swiftly deteriorated. I was intubated, put into a medically-induced coma, and thankfully the pulmonologist ordered a legionella test. My kidneys failed, I couldn't breathe on my own, I got septic—everything that could go wrong did. My family was called in and told that I had very little hope of survival. On my fifth day in the coma the social worker told my sister she should bring my son in to see me or he may not get a chance.

 

I was in an alternate universe, for lack of a better explanation. It wasn't a dream. I went somewhere. It's too long and detailed to write it all down here but toward the end, I was searching for my son and an angel took me to him. He was at a picnic with his dad's family in a park, beautiful trees, green grass, I could see it all. Except instead of my seven-year-old, he was a teenager and he was dirty, long haired, and looked mad at the world. He would barely talk to me. He said hi and ran off. I turned to the angel that brought me to him and said, "You've got to let me go back! Look at him, he needs me, he can't grow up without a mother, you have got to let me go back!" The next thing I knew, I was in a hospital bed, choking on a breathing tube.

 

I "recovered" as far as I lived. I had 6 weeks of dialysis. I developed a blood clot in my jugular and had to inject blood thinners into my own stomach. Slowly, painfully, I began to function. But I never got well. I never felt well. My memory was terrible. I had suffered from low back pain from a car accident for years before, but this pain was 10 times worse, along with more joint pain, muscle pain, and migraines. Nothing was the same. I went into a major depression. My stomach was constantly nauseous. I finally realized I couldn't work and applied for disability. I was approved quickly, thankfully.

 

It's been 9 years now, and I'm grateful for each and every day I'm alive and get to spend with my son, no matter how painful. I have OK days, bad days, and really bad days. My pain levels are tolerable and intolerable. I've just had to learn to live with a new kind of "normal.” I miss the things I can't' do anymore. I used to be fun, go out dancing at least once a month, but the pain is too bad. I try to find hobbies. I walk, I have my fur-babies. I take life one day at a time. And I never, ever give up hope or stop thanking God for that angel that led me back to my life, back to my son, back to my new normal.
No doctor can give me a timeline of when this nigthmare will end.  I'm struggling with this every day but I won't give up until I find more answers to this horrible time in my life.  

 

-Christopher  

 

I came home July 6, 2017 feeling normal for the first couple hours after work. I went to take a shower when all of a sudden this bad pain started all throughout body. I took a muscle relaxer and some Tylenol thinking it was just the flu or cold. I fell asleep, but when I woke up my whole body was in the worst pain I've ever experienced in my life. It got so bad that I asked my fiancé to call the ambulance because I couldn't bear the pain anymore.

 

When I got to the hospital I had a fever of 103.2. I was tested for many things but none of them gave the doctors any clue of what was wrong. I was admitted immediately to the hospital for further observation. For the first 5 days, I was given every antibiotic under the sun to try to bring down my fever and counteract whatever bacterial infection I had.

 

Finally, the infectious disease doctors got involved and took a blood culture. It took two more days for it to come back that I was diagnosed with Legionnaires disease. I was in the hospital for almost eight days. When I was finally released from the hospital I thought this nightmare was over, but it was just beginning. I've been home now for almost 2 months but I'm still struggling with the worst pain in my back and legs. I've been given all kinds of medications to help deal with it but nothing has helped. No doctor can give me a timeline of when this nightmare will end. I'm struggling with this every day but I won't give up until I find more answers to this horrible time in my life.
To this day, I do not know the source of my illness, but I do know that I'm incredibly lucky to be alive and functioning as well as I am three years later.  

 

-Emily Jo, age 13

 

  One cloudy Monday morning in October, 13-year-old me stood waiting for the school bus. That morning I noticed I was feeling weak. I had something exciting going on in my eighth-grade class that day, so I attributed it to the fact I didn't eat breakfast and moved on. That weakness didn't go away, however; it followed me back home all week. Over the course of this week I developed a deep, rumbling cough and chills. Nobody (including myself) was all that concerned since it was cold season. The only thing that really waved a red flag at this point to my mother was my insistence on wearing layers to keep warm, as that was very uncharacteristic.

 

That Friday night, before I was supposed to be off to my confirmation class retreat, my mom took me out to dinner at an old Italian restaurant near the camp where the retreat was being held. Waiting for my order, I distinctly remember thinking that the air seemed "thicker" and harder to breathe. My favorite soda tasted like aspirin and I couldn't finish even a quarter of my meal, which was really unusual for me and my generally large appetite. She dropped me off at the retreat that night. She's a heavy smoker, and I remember distinctly thinking that her smoking bothering me more than usual.

 

I don't remember very much about the retreat. I remember being winded after the 50-foot walk to my cabin. I remember shivering in the sixty-degree weather in a winter coat. I think the most scary moment was when my best friend told me a joke and I laughed at it only to realize I couldn’t inhale all the way. Saturday morning's breakfast was difficult for me to start, let alone finish. My appetite was gone. I asked if I could go back up to the cabin because I was feeling unwell. I barely made it up the hill without fainting and I spent all of Saturday and Sunday in bed. I couldn’t sleep since I was coughing like mad and constantly switching between feeling extremely hot and extremely cold. When it came time for me to get up and into the car to go back to the church Sunday afternoon, I was too weak to even walk across the room.

 

My mom picked me up at the church on foot, dogs in tow on their leashes, thinking I'd be able to walk the two blocks back home with her. That assumption was wrong. In her words, I looked like death, and if she wasn't so much smaller than me she would have probably carried me home. Instead I tried to walk back leaning heavily against her for support and barely made it half a block before I laid down on the curb. She ran back to get the car to drive me. She set up an appointment for me with her regular doctor the next day, and I spent most of the time until then trying (and failing) to sleep.

 

Monday afternoon, one week after I started to feel weak, I made it to the doctor's office. My mom's doctor was very dismissive. I was having trouble thinking/talking/breathing so my mom did most of the explaining. She said I had trouble breathing, lost my appetite, have a cough from hell, always chilly etc. She mentioned that my little brother had had bronchitis earlier in the month. The doctor does the regular checks, notes my throat is kind of red and that I have a mild fever, and then listened to my breathing. She tells me to take a deep breath. I try, but it hurts, and I hit the point where nothing goes in anymore. She asks me to breathe deeper. I tell her that I can't. She moved on like I had and put me down as having bronchitis and prescribed amoxicillin.

 

I stayed home the rest of Monday and all of Tuesday as well. Blankets on, blankets off, keep that broccoli away from me, take my meds at night and in the morning and at night again. By Wednesday around 2 or 3 in the morning I was lying on my back for over half a day I started to think hey, I can breathe a little more! I might be feeling better! Then I sat up and my breathing came to a dead stop before I could get much air in.

 

In the morning, I was roughly awoken by my little brother. He told me that mom had the stomach flu and I need to go to school. I'm confused because I'm still not feeling better and running on negligible amounts of sleep. I'd never had to be out of school for more than two days before, so I figured I'd do fine after taking my meds. Instead, I fainted in the field outside after walking twenty feet and had to be carried back into the school building.

 

I laid down in the office until it was time for the school bus to pick me up. I went to confirmation class that night and my mentor drove me right home. My mom, upon seeing me, apologized for sending me to school without first looking at me. We had off of school Friday, so she scheduled an appointment with my primary care doctor then and arranged for my grandparents to drive me to the appointment. I remember later Wednesday night, walking less than ten feet across our tiny kitchen to get some water and wheezing in exhaustion, my brother laughing hysterically at my inability to exert myself. I remember nothing of Thursday and barely anything of Friday.

 

By nine that morning I was struggling to keep breathing at all. I don't remember being loaded into the car. I remember fading in and out as my grandma tried to tell me some story. I don't remember getting out of the car or being in the waiting room, but apparently, I was out cold until they called my name. I don't remember being weighed at nearly 15lbs lighter than I was on Monday. I only vaguely remember sitting on the chair as my pediatrician listened to me cough and said I needed oxygen immediately.

 

I laid back and went out until they put the mask on me. Only then, after a few minutes of having the oxygen, did I realize just how fogged up my mind had been in the past week. I was more alert now and could answer questions. When did this start (last Friday), is your cough productive (yes), how are your muscles (sore), does this oxygen help at all (oh God yes), are you on antibiotics (yes), which ones (amossi... something), is this your mom's phone number (yes).

 

I went to go get a chest x-ray while my grandma, my mom, and my pediatrician all discussed whether I should be flown by helicopter to the hospital or if I'd be okay in the car for 20 minutes. They decided on driving me, and as soon as my oxygen came off I noticed the difference.

 

Those few minutes between leaving the clinic and being admitted to the hospital were some of the longest ever. I stayed in the hospital for nearly four days, which was better than expected. When I fell asleep Sunday night and they found I could maintain my blood oxygen levels at 92 without the mask they decided to release me the next morning. I was thrilled to go home and sleep without somebody waking me up every four hours for a nebulizer. I was regaining my appetite. But I still felt very weak. I stayed the whole week home to recover. I didn't find out that my pneumonia was caused by Legionella until days later when a culture came back. This explained why the amoxicillin didn't work.

 

I'm lucky in that I don't have a lot of long-term symptoms from this. Reading other people's stories really has opened my eyes as to just how Legionnaires' can affect a person for the rest of their life. Personally, the only thing I can think of that would likely be caused by this is my current struggle with short-term memory loss. I used to have a memory for everything and still have room for more; now when I partake in normal conversation I struggle not to repeat things over and over again because I forget if it's been said. I am also affected by acute asthma, but this may have been a problem since I was younger. To this day, I do not know the source of my illness, but I do know that I'm incredibly lucky to be alive and functioning as well as I am three years later.
I'm lucky to be alive, thanks to quick thinking on my doctor's part!

 

  -Madeline, 20

 

  This was a full-blown case of “we have no idea what’s happening.” Being only 20 years old at the time, it was close to unheard of to get Legionnaires disease so young. About 2 weeks before, I was just getting over mono which had weakened my immune system. My docs assumed that I was suffering symptoms from mono or asthma, though I never had asthmatic symptoms in my 20 years.

 

I was breathing about 80 times a minute (which is just panting) and my heart rate was at 130. Being 20, I was in college during finals and attributed it to stress at first, but eventually realized something was wrong. I was admitted right away and was told that it might be a blood clot in my lung or legs.

 

I went through rigorous blood and physical testing. Somehow my docs found a way to get my breathing stabilized and started insane antibiotics doses and nuclear testing. They initially thought I had lupus, but they sent the labs to the CDC in Atlanta and it turned out I had Legionnaires. I’m lucky to be alive, thanks to quick thinking on my doctor’s part!
My life is back to normal now, however, I am constantly researching the possible causes of my illness.  

 

-Stephen  

 

I have always been a very healthy and active middle-age man, but on April 2, 2016 my life was turned upside down. The week end before, I had travel for a funeral of a family member. During that period, I had started to feel weak, which I shrugged off as being tired. In the days to come, I would experience chills, loss of appetite and confusion. At 2 a.m. on April 2, I collapsed while trying to make it to the bathroom.

 

My wife rushed me to the ER, where I underwent a series of tests which resulted in a pneumonia diagnosis. I was then placed on antibiotics via intravenous drips, which I did not respond to. I was eventually induced into a coma, which lasted for three weeks. During this period, I experienced the worst nightmares and hallucinations one could imagine. I was told that I was coded twice, with all of my major organs failing, and family was advised to expect the strong possibility of my death.

 

Even though the prognosis was grim, I was blessed with a wonderful, caring and aggressive doctor fueled by my determined, loving and tenacious wife. These two ladies would not give up. My condition eventuality started to improve, and I was subsequently placed on Levoflacin and other antibiotics. My ordeal resulted in weight loss of 30lbs. I had to learn how to write, walk and think clearly again.

 

My doctor stated that she still doesn't understand why this happened to me. My life is back to normal now, however, I am constantly researching the possible causes of my illness. I am a pre-diabetic, which has been the center of blame, but I am not so sure. I am very thankful to the almighty God for intervening during my greatest need.

 

This site is a very useful in understanding why this may have occurred. Thanks so much for providing your stories.
I am glad that I caught it from a droplet in the air from the river and not another member of my group, whose median age was 77.  They would have been killed by the bug; I was younger and able to fight it, but the bug has destroyed my life.   

 

-David, age 43  

 

My church's Men's group had me as their adventure coordinator in 2015. I was the youngest member at 43, but to all of us it didn’t matter. I had worked in the airline industry for over a decade, so I planned an "Airplane" adventure with my group. We chartered a bus and played the movie Airplane as we were driven to the downtown airport here in Kansas City to visit the TWA Museum (in the original TWA HQ) and the Airline History Museum. On the ride down, I acted it up as a flight attendant, passing out snacks and generally making a fool for fun.

 

It was a very hot day and the Missouri River runs extremely close to the two museums we were at. It was about 95 degrees outside and close to 60% humidity. As a result we were running back and forth from the air conditioned bus to the air conditioned museums. I was the crowd director so I was out in the heat to most. We had a blast, and after it was all over, the members of my group said that was the most fun they had in 50+ years! I was tired and went home afterwards.

 

The next day I woke up and was really fatigued, so I took it easy. I felt too "out of it" to even go to church services. My feeling fatigued started to go downhill through the day, and at about 7:00 pm my husband took my temperature and it was 103.3. We rushed to the ER, where they iced me down, took what felt like every drop of blood I had in my body, and then I passed out.

 

I do not remember a lot, just flashes of memories, like when they put in the pick line. Then nothing. When I awoke I couldn't open my eyes, nor speak, nor move. I could hear everyone talking, but I could not respond. I felt the bronco-scope, the ventilator, and the stomach tube in my mouth and down my throat. I tried to move to let them know I was awake, but nothing happened. I heard the doctors talking to my husband and to my mother about how the induced coma was the last step in trying to kill the legionnaires pneumonia. He gave them a 50/50 chance of me surviving. I was lost in time. I do remember hearing my mother begging me to fight and I felt her tears on my cheek as she talked and cut a lock of hair off my head. She thought I was not going to make it.

 

Finally one day or night, I couldn’t tell, I felt calm, and serene and no longer scared. It was a weird feeling and I saw my father, who had been dead for 15 years at that point. He shook his head and pointed down and away, and simply said, "No.” Then there was immense pain, and it was hot and burning. It was the defibrillator burning my skin with the second shock. Now I was in pain, and back to the void that was still imprisoning me.

 

Next I remember being told, "David, wake up, but there are tubes in your throat." My eyes opened (with help from the doctor) who was standing behind my bed. It was the first memory I had at the time. The rest of the memories took about 6 months to come back. They told me to hold my breath, and they took out the stomach tube, then the ventilator started up again. They gave me a moment, then they turned that off, and pulled that tube out. I tried to ask where I was, but I could not make any sound, nor see further than a foot in front of my face. My husband leaned in close so I could focus on him. He told me that I was in the CICU and was in an induced coma for the last week. He begged me to fight, saying he did not want to be a single dad to our foster children.

 

It was another 4 days before I could truly move because I had a reaction to the propyphol and had advanced muscle wasting. I fought as hard as I could and survived the pneumonia, but it left me with a near zero immune response, and the necessity of first a walker then a cane while doing physical therapy.

 

It is now Sept. 11th, 2017, I still suffer from shortness of breath and tire very easily. I also have to see a pulmonary doctor to monitor the now present emphysema that has developed. During my weakened state I also developed Alopecia Barbae and have to shave my head since the hair follicles in large patches of my scalp and body are dead.

 

It took six months of speaking weekly with the Clay County Missouri Health Department to figure out how I got Legionnaires. There was a couple (a 29-year-old woman and a 30-year-old man) at the same museum on the same date, at the same time as I was, who drove home to Oklahoma City that evening. They did not go to the hospital when they needed to and the bug got them both. The coroner in OK the CDC in Atlanta both verified that it matched the strain I had.

 

I am glad that I caught it from a droplet in the air from the river and not another member of my group, whose median age was 77. They would have been killed by the bug; I was younger and able to fight it.

 

But that little bug has destroyed my life. I get winded very easily, sometimes I am so weak and off balance I have to use a cane. It is easier taking care of a full head of hair than having to shave it nearly every day. Since my hair was dark brown and the Alopecia had killed the follicles, no matter how well I shave you can still see where I have an off-set bald spot. It not only tried to kill my body, it has damaged my self-esteem. Its effects linger now until the day I see my Dad again.
The disease has long term effects.  It totally changed my life and my family's .  There needs to be a push for testing and transparency with hotels and other buildings.  

 

-Karoline  

 

II was working as a consultant in NYC, traveling weekly from Indiana to NYC. I awoke at 2:30 a.m. to get ready for my flight. I knew immediately that I could not travel. I spent most of the day sleeping and very chilled with a severe cough. The next morning, I attempted to make my flight, but once again there was no way I could travel.

 

By Wednesday night I had my daughter take me to ER. The doctor did a chest X-ray and confirmed that I had pneumonia. He told me that I could go home on antibiotics or be admitted. I tried the antibiotics route. That is pretty much all I remember.

 

By Friday, my daughter was worried and in contact with my mother. Again, we went back to the ER. This time they admitted me with a 104-degree temperature and both lungs were full of pneumonia. I don’t recall anything from the following month. After being hospitalized for three days, I was complaining of severe headaches and stomach pain. I kept telling the nurse I was going to die.

 

They called my daughter back to the hospital. They sat me on the side of the bed and my heart stopped. They began CPR and continued for 45 minutes. I was placed in life support. My husband and family were called in. The hospital was trying to transport me to another hospital that could provide a higher level of care. I found out later that there wasn’t a rush on finding me a bed because they didn’t think I would live.

 

A bed became available and I was transferred. The doctor told my husband, daughter and family that I may not survive the transfer. I made it to the hospital and was placed in ICU. I had internal bleeding, my kidneys had quit functioning and they had to start continuous dialysis. My platelets were critically low (40’s). I developed heparin induced thrombosis and DIC. The prognosis was grim, but the doctors told my family I had a strong heart. They had to put me on Vasopressors to keep the blood to my vital organs, with the knowledge that I would probably need some type of amputation if I survived. Ultimately, I was diagnosed with Legionnaires disease. They began antibiotics to fight the infection. I stayed in ICU for a month under heavy sedation. Evidently, I was blinking my eyes and squeezing people’s hands, though I have no recollection of this. They tried to take off life support once, but my lungs were still too weak. A few days later they were successful.

 

When I woke up, there were approximately 15 IV bags hanging on both side of my bed. Once I noticed my legs I was in shock. They were covered with black tissue and wounds and my feet were blue. I remember a single tear rolling down my cheek and a priest came into talk to me.

 

The doctors called me a miracle, but I certainly didn’t feel like one. I spent a few more days in ICU and was then sent to a step-down unit. I couldn’t eat, I couldn’t talk due to the tube, I had no strength to turn myself or sit up. I experienced extremely low blood sugars nightly. I was afraid to sleep because I thought I would die.

 

Ten days later I was transferred to a long term acute care hospital. There I received extensive wound care and started therapy. My feet and ankles were gangrene and completely black. We knew that I would need to have bilateral amputations. I was eventually transferred to a nursing home for a few days until my surgery. I stayed in the hospital for a few days following the surgery and was transferred to an inpatient rehab facility. I received 3 and 1/2 hours of physical and occupational therapy as well as continued wound care. After 3 weeks in therapy, I had learned to transfer from my wheelchair to bed, toilet and shower. I was getting stronger. I was ready to start my life as a bilateral amputee. I had been in some type of health care facility for 114 days.

 

Once home I continued 3 times a week wound care and started getting fitted for prosthetics. This process was slower due my leg wounds. Finally, 10/5/17 I took my first step.

 

I am fortunate that I do not have any brain damage from my heart stopping. However, this disease has long term effects. It totally changed my life and my family’s! There needs to be a push for testing and transparency with hotels and other buildings. I am positive that I contracted this disease in NYC, either at my hotel or office building, but it hasn’t been proven.

 

I am lucky that I survived; how many people haven’t, and it was written off as old age or chronic condition? Testing can prevent this disease.
You know that you were in serious jeopardy when you walk into your family doctor's office and they say, "Thank God for answering your prayers!"  

 

-Angela  

 

It started on June 25, 2017. I started just not feeling well. I had a headache and a cough and figured I had probably caught a summer flu. This was typical for me because I have rheumatoid arthritis and I am on immunosuppressive medication (Humira at the time). A couple days passed with these symptoms and then I noticed a fever of 102.2. I still just figured it was the flu and would pass. I started taking Advil for the fever and migraine the headache had turned into. On June 30 the fever hit 103.5. I was still taking Advil and I had skipped my usual dose of Humira due to being sick. I started keeping an ice pack on the back of my neck. I couldn't get the fever to stay down. Coughing then became super painful in my chest. I have had pneumonia before and realized that the flu I thought I had was really a case of pneumonia.

 

July 1 I decided that I needed to go to the emergency room. I took 4 Advil and headed to the hospital. The 45 minutes that passed from taking those to triage didn't drop my fever at all. During triage my fever was up to 104.4. I got taken to the back to be tested. They did a chest x-ray and started to connect symptoms to the "hot mess of pneumonia" they found.

 

They told me that they were transferring me to another local hospital, possibly to the ICU. I remember the ambulance getting there and telling my fiancé to follow the ambulance in his car, so it wasn't left where we were. I also remember the ambulance ride and feeling every pothole on the way.

 

I don't remember getting to the hospital. On July 2, I remember sitting in my room and picking at some raw vegetables and dip and talking to my fiancé. I don't remember anything else that happened except for a few bits and pieces until July 18. According to my fiancé, I was put into a medically induced coma between the 2nd when he left to get some sleep and the 3rd after work when he had come back.

 

They had put me in the coma due to respiratory distress. I was also told that the infection on top of the pneumonia had also gone septic and caused some congestive heart failure. I remember going in and out of consciousness, some testing for blood clots, my throat being really sore, swallow tests, and a few imaging tests. I heard discussions between my family and my staff about the ventilator and a trach because I had wound up with pulmonary embolisms. I was reoriented on July 18.

 

I couldn't figure out for the life of me what had happened to all the time I was missing, why I had some odd thing on my neck, or why I couldn't walk. I was told that I was to start occupational and physical therapy the following day. On my second day of PT the therapist was super worried about my heart rate getting high with movement. She didn't explain why. The OT therapist said that the tube was because I had a lot of trouble breathing.

 

At the end of the first week being awake, PT decided to try me to walk without the walker. I needed a lot of assistance at first. But got better every day. I was walking with the therapist explained that I had sepsis due to Legionnaires. I was completely thrown for a loop. I got back to my room and tried to look up what it was.

 

I was weighed on the following day at only 94 lbs. Before I got sick I weighed 116. That was devastating. I have always had a hard time gaining weight. My hands were swollen and very sore. My knees and feet have seemed worse with symptoms ever since. It took 3 months of healing outside of the hospital on the before getting put me on something for the RA again. I had to get OKs from the cardiologist, pulmonologist, and family doctor first.

 

You know that you were in serious jeopardy when you walk into your family doctor's office and they say "Thank God for answering prayers!” It took me a while, but I began to recover from all of it. Or at least as much as I have.

 

I have been continuing to recover ever since. It took me 7 months to get back to my pre-illness weight. My back, hips, knees and feet still feel week and ache. My legs sometimes feel like I just started this journey. I still am not sleeping well. My hair has been falling out. My concentration still suffers. I am tired all the time. My memory is not at all what it once was.

 

I have been told that if I ever have a fever above 100.6 to get seen. It's better to be safe than sorry. I have caught up on my flu and pneumonia vaccines. My work here on earth is not done. I'm not going anywhere anytime soon!
Life's too precious and short:  you have to make the most of it because things can change in a heartbeat.  

 

-Lynne  

 

I became ill last August after visiting New York; it felt like I had flu but with each day that passed I felt worse and very frightened. I am eternally grateful to my husband and my family for their love and support through this horrendous time and to the medical team at Antrim hospital for the help and care given to me. Without them I know I would not still be here today.

 

Almost a year on I still suffer the effects of severe fatigue at times, which is frustrating, but the alternative is too scary to dwell on. Thankfully I am back at work now after eight long months and I'm getting on with life the best I can. Life’s too precious and short; you have to make the most of it because things can change in a heartbeat.
Apparently I had endured Legionnaires' disease, quite full blown and nasty, in a bamboo bungalow in Bali, with no doctors, no antibiotics, just a Balinese rice farmer who made sure I was hydrated and had calories going in.  

 

-Susi, age 35  

 

In 1995, at age 35, I was living in Hanoi. In November I went to Bali for what I thought would be a two-week visit with my sister who was working there at the time. After visiting the town of Ubud, I was considering staying in Bali a few more weeks, so I rented a bungalow in the middle of the rice fields about a mile or two from Ubud. I went to the Matahari department store in Bali's capital (Denpasar), to buy household whatnots. I parked on the rooftop of the four-story concrete building and was somewhat annoyed by the massive main air conditioning equipment on the roof, spewing mist and heat all over the top of the stairway leading down into the department store itself. I was a non-smoker, an athlete, and an expedition leader, familiar with Southeast Asian tropical environments.

 

A few days later I caught what seemed like a bad cold, or flu. It continued to get worse. Fever, cough, difficulty breathing. I retreated to my bamboo bungalow to ride it out. At night I would awake with coughing and wheezing and would cough and gasp until I blacked out or nearly blacked out. It was frightening. I also was experiencing waves of fever, confusion, and fatigue bordering on total immobility. Fortunately, the Balinese farmer who built the bungalow and rented it to me was concerned and helpful. He brought me food and water every day, cleaned the place, and even had traditional medicine therapies provided for me.

 

After about two weeks, the symptoms subsided. But I still had a terrible time riding my rented bicycle around (it's hilly there), thinking, functioning, getting things done. There was a steep path with giant stone stairs that I had to climb from the road to the level of the rice fields where my bungalow was located. I'd say it was five stories high, but with huge steps, and very steep. I was confused and alarmed that I could not climb those stairs without wheezing and resting at intervals.

 

The wheezing felt like asthma, but I have no allergies or history of asthma, nor do any members of my extended family. Yet it felt like I did. It was like an inflamed respiratory tract, going into spasms or something. It was extremely scary and constant. I felt fragile, and for the first time in my life, was compelled to be cautious and cosset myself like a person with some serious condition. I decided to rent a motor scooter because I wheezed so badly when I rode the bicycle and worried I might black out on a bicycle on a main road. Still the wheezing and spasms were a constant, intermittent problem.

 

The wheezing and breathing problems abated over a period of a few months. But diagnostic imaging of my chest has never been normal since. I suppose my lungs/bronchia developed scarring, or residual inflammation because of this "flu".

 

Four years later I had a completely different localized tissue infection and went to the best hospital in Singapore to get it sorted out. They not only took tissue samples to the lab but also ran comprehensive immunology-focused blood panels.

 

Three days later I was still in the hospital when lead doctor came in to speak to me. He went over the results of my blood tests, and there were the usual and expected antibodies for typhoid, and other tropical diseases I had been immunized for. I didn't have HIV, or any other discernible immunodeficiency. But there was very clear evidence of a prior Legionella infection. He asked me if I had ever had a flu-like illness with specific symptoms, which he mentioned in detail.

 

Apparently I had endured Legionnaire's disease, quite full-blown and nasty, in a bamboo bungalow in Bali, with no doctors, no antibiotics, just a Balinese rice farmer who made sure I was hydrated and had calories going in.

 

The infection that I went to Singapore to get sorted out was resolved very quickly. But four years prior to that, the Legionnaire's disease was not so easy to overcome, and it took quite a long time before I felt even "near-normal". I used a Ventolin inhaler for a few months when it was needed. Over time it became less and less needed. And I went on with my life. But I'll never forget that "flu". I nearly died from it. It was Legionella. I would guess it came from that funky central air conditioning apparatus at the rooftop parking of the Matahari "department store" building.

 

I was very healthy, young, fit and strong then. To this day, I wonder how many Balinese people were also infected with Legionella that weren’t as lucky. With health care as it was, and still is, in Bali, there is no way they would have been diagnosed, or treated in any useful way. I expect lives were lost. It still really bothers me to think about this. And my own suffering is not a memory I treasure either.

 

That's my story. I'm 58 now, and I'm "fine". My sister is climbing Mt Everest as I type right now. I often wonder if I would be climbing with her, were it not for the Legionnaire's disease episode.
I don't wish this on anybody.

 

-Jose

 

I think I got Legionella bacteria off of my dirty tub, but God only knows. I'm so glad it's not contagious from person to person because I don't wish this on anybody. It started 5 days ago with fever 104 degrees. I started taking care of the fever with cold showers but eventually I wound up at the hospital where they diagnose Legionnaires’ disease. I got lucky in my case because this could have been worse. I think I got to the hospital on time, the diagnosis was quick, and I got antibiotics right away. I feel better now but at some point, I felt like my brain was getting cooked by the pain and the suffering. It's unbearable, I don't know what will happen after I get heal. I will definitely quit smoking after this.
I have no real quality of life right now. I do wonder how much of this may be related to Legionnaires’.

 

-Tamara

 

We had a particularly hot, humid, and rainy summer this year. My husband and I both suffer from COPD and require air conditioning in the hot weather as a result. We used the A/C almost non-stop this year, and never cleaned it or realized the filter to the unit was missing.

 

In late August, I started feeling ill, and as the days wore on, I developed a sharp pain in my back, near my shoulder. Every day it got worse and began to hurt to take a breath. As I started to feel worse, I took my temperature and it registered at 101.5. By 5 am the following morning it rocketed to 103.5, and I was having real trouble breathing. At that time, my husband took me to the ER, where I was admitted to the CCU with pneumonia. I was later diagnosed through a urine sample with Legionnaires’.

 

There was an outbreak of the disease in New Hampshire, but I had not been there, and was the first out of 4 cases in my area diagnosed. I have a very bad back, which began acting up while I was hospitalized. The day after my discharge, I was again taken to the ER for horrendous back pain. They found that on top of my current issues, that I had herniated two discs. At that time my left leg has gone numb, and the feeling has not returned. That back pain continues, sometimes so bad I cannot get out of bed.

 

I have seen my Dr., a neurosurgeon, a neurologist, and to date no one can determine the cause of all this, saying my symptoms are varied and don’t fit a pattern. I am at my wits end! I hurt all the time and because I am still a smoker, neurosurgery will help until have been tobacco free for two to three months.

 

I am also chronically fatigued and coughing up large amounts of mucus daily. Yes, I know that ideally, I should quit smoking. But this is also a particular stressful time in my life, and quitting would be all but impossible right now! I do plan to quit once my life settles. In the meantime, I have no real quality of life right now. I do wonder how much of this may be related to Legionnaires’.
Everyone said I did so well because of my good health. Well, now I have headaches, fatigue, neurological problems, etc.

-Cara

I was diagnosed with pneumonia. I had never had it before and was healthy. Suddenly, I became very sick. I was horribly thirsty, and I really couldn't understand things. I was in my 40s and taken to the hospital. I became septic and my kidneys failed, and I was in an induced coma for weeks. Then they discovered it was Legionnaires. Later, I left the ICU and moved to a rehab facility. Everyone said I did so well because of my good health. Well, now I have headaches, fatigue, neurological problems, etc. For the first couple years I couldn't taste things. This has had a huge impact on my work and socializing. There is not any support that I know of.
I was in the hospital for about five days, but I feel it took months for total recovery.

 

-Lowell

 

Five years ago, I caught Legionnaires'. I remember while I was working, I felt like I was coming down with the flu. It was Friday.

 

I was absolutely miserable at work and left after about five hours. I went home and went to bed. The whole weekend, I was sick with the flu, fighting chills, fatigue, etc., or so I thought. But after my fever of 104.2 wouldn't go away, I finally went to walk-in care on Sunday at about noon.

 

One look at me and the walk-in doctor sent me to the hospital. I was diagnosed pretty quickly with pneumonia and was admitted.

 

The following day, I was told I had Legionnaires'. I never had a cough during this sickness, but it felt like a really bad body flu. All I wanted to do was sleep. I was in the hospital for about five days, but I feel it took months for total recovery.
I am glad after reading this to know I am not the only one out there dealing with these side effects and things can get better.

-Arthur

May 2019...

It was the end of the month and I was helping a friend paint her home. Her house was about 35 miles away from mine which is in the city of Boston, so in lieu of driving home she opted to get me a room because I was going to be helping her the following day. Once I opened the hotel door it was hot and musty, and you could tell no one had entered that room for a while. I turned on the AC and was hit in the face with a musty mist; that smell still lingers with me today, as it was liken to old mop water. Didn’t think anything of it, ate food and went to sleep. Continued with my weekend as scheduled: basically, the gym and sleep.

That following Monday, I felt out of it. I wasn’t sick, just exhausted. I thought it was simply from going to the gym. I didn’t have work because it was Memorial Day and wasn’t due back to work until Wednesday, May 29, but I stayed in bed the whole holiday and the day after. Still feeling exhausted, I called out sick May 29 and returned to work on May 30. I just remember being at work tired. I thought it was from over-sleeping and the best cure for that was more sleep. As the weekend rolled around, I was back at my friend’s house painting, but I noticed I needed a break every 5–10 minutes or so, I was a bit sore and always out of breath and sweating profusely. That Sunday I was due to help again in the morning but opted to sleep until 4 p.m. I went back to help paint but at that point I was a tired, useless mess.

Monday rolled around and it had been nine days since I was at the hotel. I drove to work and sat in the parking lot for about an hour (I was well late for my shift at this time) thinking about how I was going to walk to my desk because I was just tired and sweaty. I opted to drive home because if I couldn’t walk to my desk after a long night’s sleep, how was I going to drive home after 10 hours of work? I went to bed and when I awoke, I could no longer walk straight. I was slamming into walls and couldn’t see straight. My mom would be coming home in a few hours, so I thought to ask her to take me to the hospital. When I awoke it was already midnight, I figured I would catch her before work. I overslept again but now I lost all motor skills, couldn’t walk at all and my speech was slurring so Siri didn’t recognize my voice. I had to crawl to use the restroom and had a hard time not knocking things over when I did. I awoke in my bed to my mom asking me about the mess in the bathroom. She immediately knew I was sick once she heard me speak.

I woke up in the hospital surrounded by nurses and doctors trying to figure out why I couldn’t talk or walk, and why I had a fever of 106. My breathing felt fine, but they later explained I just have really big lungs, but they were full of pneumonia. It took about four days before they figured out it was Legionnaires’. I still had a temperature of 103, still couldn’t walk, no motor skills at all, and was unable to speak. Hallucinating at this point was the most enjoyable part of the day. I know I had rooms of family and friends and by the look on their faces I could tell they were told the severity of everything (which I didn’t even know).

In any case, I was in the hospital and rehab for about three and a half weeks. I can walk and talk again, and all my motor skills have returned. I drop things a lot and am very forgetful at the minor tasks. I had to relearn what I did for a living and how to drive. I used to love working out but it’s so dangerous now because I can’t balance weights like I should and walking hurts after a while. My joints feel like they are on fire most of the day and the rest of the day I guess they assume that I just did an amazing leg work out because they are a pain to bend. Steps are my new arch nemesis; my knees feel like they are about to buckle and crumble whilst walking up or down them. It’s exhausting thinking about every step because even a minor slip can lead to a major injury. I have dizzy spells, get tired at the drop of a dime and lose my train of thought halfway through tasks. It has been interesting, and I am glad after reading this to know I am not the only one out there dealing with these side effects and things can get better.
Now having been discharged only 10 days ago, I am still experiencing lethargy, which I am told could persist for months.

-James

I thought I was coming down with the flu, as I was experiencing body aches, chills, sweating, and a low-grade fever. After three days and nights of those symptoms plus loss of appetite and some dry heaves, I decided to drive myself to the emergency room at Faulkner Hospital in Boston. I am glad I did. I stayed five nights and six days in the hospital with constant vitals checks, blood drawn, urine and stool tests, and a sputum test. The infectious disease team at Faulkner finally, on the fourth or fifth day, diagnosed me with Legionella pneumonia. I was given an antibiotic which immediately started working, eliminating my fever and sweats. Now having been discharged only 10 days ago, I am still experiencing lethargy, which I am told could persist for months. We never determined where I contracted the bacteria. My guess is that it is the humidifier I used in my bedroom.
I pray for everyone who has to deal with the actual disease and the aftereffects.

-Matthew

My battle with Legionnaires’ pneumonia started September of 2019. Thursday night I was struggling to breath, coughing, and just having a miserable night. I still went to work Friday morning. Big mistake. I struggled all day. Sick, coughing, so hot that I had to stop my postal vehicle and get under a tree because I was so hot. I made it through the day, but when I punched out of work, I was still so hot. I got in my Jeep for my drive home, turned the air conditioning on and within a few minutes I was shivering uncontrollably.

When I got home, I got right in bed and couldn't stop shivering. I struggled through the night, and when I woke up Saturday morning for work I was dizzy, shivering, and clammy, so I called in my friend who is a nurse stopped by and took my temperature; it was 106º and I felt like I was freezing. She made me eat some ice and take my blankets off. After she gave me Tylenol and some Motrin my fever dropped to 104º, so I thought I was getting better and I refused to go to the hospital. My fever went up and down all day. Sleep was difficult. Sunday morning my fever was back up to 106º. I watched football and tried to convince myself that I was feeling better, but eventually went to Med Express on Sunday afternoon. The doctor said I had mild bronchitis and gave me some meds and told me not to go to work tomorrow. I just kept trying to act like I felt better.

Monday my temperature was still 106º and it was hard to breathe. I was seeing spots and my vision wasn't good. I went back to Med Express because I definitely wasn't going to be able to work Tuesday. The doctor looked at me and told me to go to the hospital. He said I had pneumonia for sure and believed that I also had meningitis because my skin was grey and my neck was aching.

I went to the emergency room and was admitted that night. I truly believed I was going to die and I almost did. At 9 p.m. I started coughing and gasping for air. My temperature went up to 106.3º and my body was going into convulsions. When I locked eyes with the nurse, I knew this might be my last night on earth. They gave me morphine to calm me down and I was able to write a note to my daughter saying I love her. I was rushed to the ICU where I spent a week on a respirator and morphine drip. They didn't diagnosis me with Legionnaires’ pneumonia until five days later when they found the bacteria in my urine. My lungs were down to 20% functionality and my oxygen level was in the 40 to 50 percent range but that went up quickly when they realized what was wrong. I was released from the hospital about 15 days after I was admitted and back to work in mid-November.

Unfortunately, the story is still ongoing. While I was in the hospital, I started having severe joint pain in my neck and both shoulders. I worked with the pain until the middle of January before my right shoulder to my fingertips went numb and started swelling up. My body is retaining water horribly. I am in severe pain, I'm exhausted all the time, and I get fevers randomly. My face has swollen up for no reason and my memory is not good. I work as a letter carrier for the Postal Service and I'm physically unable to handle the heavy lifting and the rigors of the job. Twenty-eight years of federal service, and I'm honestly screwed. I am too young to retire and I can't get SSI. My doctor says I need to work with my left hand which is not possible; he still doesn't believe I had Legionnaires’ pneumonia, so he won't fill out the paperwork. I am really scared now, and I have so many health-related problems since I've had this: neuropathy, myopathy, rheumatoid arthritis, vascular disease. I have been told I have all of these, but I can't find any doctor that will commit to the diagnosis. I'm broke and my insurance is now going to be eliminated because of premiums I can't afford. My battle with this disease will take my life one way or another. So that's it, that's my story. I pray for everyone who has to deal with the actual disease and the aftereffects.