Updated on 6/15/19
“I went to sleep on May 4, hardly able to breathe. That’s pretty much all I remember until I woke up on June 3rd. My wife advised me I was on life support for almost a month and it looked very grim at times. This disease almost killed me.” T.C.
“I had LD in 1997: Unconscious, fever 107°F, several days on a cooling blanket, 56 days in coma, 71 days in hospital, had to learn to walk again. My neurological system is severely damaged. I am unable to work. I am fighting Social Security for disability benefits. HELP.” R.H.
“I am an RN and was caught by surprise nonetheless. My temperature was 104°F and I finally went to the doctor. On the third night, I could feel my lungs collapsing and we called an ambulance. I could no longer walk. I was admitted and apparently had a respiratory arrest and was intubated. Things went from bad to worse as they waited for the cultures. When it was confirmed as Legionnaires’, the doctors started three antibiotics. My kidneys then went and I was in renal failure and needed dialysis. My blood pressure was almost nonexistent. …I had about 11-15 specialists on my case and over 35 x-rays. I was completely helpless. I was laid up for another three months trying to rehab myself… had to learn to write again. I will never forget the suffering of both me and my family. I wouldn’t wish this syndrome on my worst enemy.” A.F.
“I still suffer a lot. Had I not been a nonsmoker and very fit (a swimmer), it would have killed me, although sometimes I wish it had as each year I get worse.” S.F.
“My wife was placed on a respirator where she remained for nearly 4 weeks. Fortunately, from the outset her chances for survival were greatly increased because the infection control and pulmonary physicians correctly diagnosed her condition and immediately treated her for Legionnaires’ disease. The experience was harrowing for us all.” J.E.
“I went to my doctor and requested to be tested for Legionnaires’. He was reluctant to test me. I insisted, and thank God I did. If it weren’t for a coworker insisting I be persistent with my physician, I would never have known that I had LD, and could’ve died. I may be a nurse but had never encountered LD and was not aware of all the symptoms or the treatment or the severity.” W.W.
“It’s been 6.5 years now and I still struggle with long term memory loss. It took over a year before I was able to work again. The reports say I was completely dependent on life support to keep me breathing…without it I would have died. I spent the next three months in and out of hospitals. There are still memories from past that are gone. I have “black holes” where the memories should be. I’ve lost most of my memories of my youngest daughter’s life from age 1-6…they just vanished. It was the worst experience of my life.” D.D.
“My ex-uncle-in-law is dying from Legionnaires disease. Why can’t they give him a lung transplant? They’re so desperate that he was put in a coma and given steroids. They say he would die if they try to open his chest.” M.L.
“My next door neighbor was diagnosed officially as having Legionnaire’s disease. He started being very sick for about a week at home and then finally went to the ER unable to breath very well. He woke up from a coma six days later. He had a tracheotomy to save his life in the ER and was very sedated in intensive care thereafter and very sick. The doctors have told him it will be at least a year until he’s normal.” J.C.
“My 19-year-old son died from this disease last month.” D.M.
“I am a kind of healthy 26-year-old who contracted LD. I was in the hospital for four days before they tested me and diagnosed LD. It affected my family hugely. I had to take approximately three months off of work. Since I have had LD, I seem to be getting ill all the time…I just wonder if having LD could have affected my immune system.” S.G.
“I contracted Legionnaires’, spending just under 30 days in the ICU on life support. After… lots of home therapy I continue to have what doctors claim to be nerve distortion in my upper right shoulder. This continues to be very frustrating and extremely painful. I also now (rarely before) suffer from intense light and sound sensitive migraines.” T.F.
“I have just returned home from attending the funeral of my sister’s father-in-law. The family got a call today that the cause of death was Legionnaires’ disease. The deceased was a diabetic and he also had cystic fibrosis. 74 years old. Non-smoker.” G.F.
“My 64-year-old father was recently diagnosed as having Legionnaires’ disease. It has turned into a nightmare both physically and financially for my parents. I truly believe that someone needs to be held responsible for what happened to my father.” K.D.
“My husband was in the hospital for 18 days and almost died. He is a sheet metal worker and prior to getting [sick] was working on the same jobsite for a long time. The insurance company does not want to test the jobsite we think he got it at.” Erica
“This disease was the worst thing medically I have ever experienced and had I not been healthy when I got it, I would probably have died. I have not been in a spa since.” M.F.
“My husband contracted Legionairres’. He was so severe that he almost did not make it. He is permanently disabled…from the Legionnaires’. There appears to be no relief despite multiple treatment modalities. His symptoms remain with periods of exacerbations.” K.F.
“I am a 43-year-old single mom and was recently blindsided by Legionnaires’. I went to my Urgent Care clinic with what I thought was bronchitis after about five days of a dry cough and then developed a fever. I was diagnosed with pneumonia, admitted to the hospital, and the next thing I knew I was waking up in ICU with a breathing tube in my throat, only to find out I had been in a COMA FOR 5 DAYS!!! Since I was the only case reported in my county, the health department won’t come to the house to do an investigation.” M.B.
“My son has just been diagnosed with this. He is a healthy, twelve-year-old boy who doesn’t get sick very often.” L.J.
“I was just recently released from the hospital and nearly died from Legionnaires’. I have no idea how I got it.” G.M.R.
“I am 47 years old (male), do not smoke or drink, and was in healthy physical condition. I contracted the disease in February 2009 and was treated in the hospital one week later. My experience with LD in the hospital and recovery at home was the worst thing I have ever been through. However, after five months I still have a major problem with short term memory–I forget where I am going, or forget people’s names even though I have known them for years. Please help. It seems like the long-term effects from LD are worse than the hospital experience.” S.S.
“My husband was a patient in a local hospital for treatment of a platelet disorder and developed Legionnaires’ disease. He spent a total of about 50 days in the hospital during a three month period.” C.B.
“My friend was admitted to the hospital with a temperature of 108. Five days later he was diagnosed with Legionnaires’ disease. He is on a ventilator and fighting for his life.”
My mom 69 fairly healthy went into the hospital 5 days ago. After being sick for a week (flu, fever, vomit, SICK) To the point she couldn’t stand up or dress herself. Ambulance was called and she was taken to ICU. They immediately sedated her and intubated her. She was diagnosed 2 days after arrival. She has been under for 5 days now. Her oxygen has been from 100% to 60%. Sedatives from full on to non. Right now when they were non the body didn’t react well (Fever. High heart rate. Low oxygen intake.). Oh my god. This is the worst to see as a relative and I can only imagine how she is feeling. Does anyone have tips? We make sure there is someone with her at all times. We talk to her, hug her and encourage her. Michael
Hi. My husband does not remember us talking to him when he was incubated. I visited him twice daily as we lived close to the local hospital..but he was only there three days. Then was airlifted to another hospital. Then the ventilator was dropped to 80 percent..then to 70..60…when it was at 60 I asked him did he know I was with him and holding his hand and he shook is head yes.. I said can you squeeze my hand..and he did… I was so happy.. at one point the vent. Was at 90-95 ..so that was breathing for him. Good luck to you. Patricia
My husband just came home from hospital yesterday. He was on a few antibiotics. One of them being azithromicin..that’s what they said works on the legionella bacteria.. my husband is physically fit..works two physical jobs for just under 15 yrs. He is 48. One week his missed two days of work. He took Nyquil as he does if he feels like he’s getting a cold. So the following week he missed the Monday..he didn’t want to go to erase..I made him promise he would go to urgent care that Tuesday. So we went..they sent him right to erase saying he had pneumonia. He was put in the critical care unit that night…the next day the test came back presumably legionnaires.. well his oxygen levels kept dropping..the next day he was put on ventilator and was air lifted to the university of Pennsylvania..this disease caused him to have a heart attack and he started to have kidney failure. This was happening too fast..well..yesterday the start of his third week he was discharged. We will b e going back within two weeks because now he needs to have a catheterization and heart surgery to repair a valve… I wouldn’t wish this nightmare on anyone. And god bless you all who are going through this horrible disease. As someone else mentioned about their loved one being the only case..same here..I just hung up with local health dept. But I am going to seek information from a lawyer. Patricia
I’ve been actively implying legionella prevention programs for over a hundred buildings for almost nine years. We hardly find any bacteria in the hot water, as long as it is over 55 degrees Celsius. We do monitor the temperatures on a regular basis. A weekly assessment of the temperatures keeps the hot water systems safe for use. It is a proven method. D.D.
I am 6 years post Legionnaire’s, contracted when I was 42 and went through a lot of the same, vent-dependent, kidney failure, sepsis…now on SSDI and also have memory loss, significant pain and fatigue…my prayers go out to you, to all of us. Marcia
I was in coma for month with legionnaires..from what I was told it took couple weeks to get under control. Hang in there .but if have any questions about whats going on if I can I will help..I don’t remember but all. My fam does. Patrick
Several of the above quotes were excerpted from the full versions included in the book Protect Yourself from Legionnaires’ Disease: The waterborne illness that continues to kill and harm.
June 15, 2019: As you can see below, several more survivors have shared their stories since this article was published, many of whom expressed that they were comforted and encouraged to read the stories of other survivors, realizing they were not alone.
Do you have a survivor story? If so, please tell it in the comments below.