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ARDS Support: my story and looking to help other survivors
Intensive Care (ICU) | Last Active: Mar 21, 2024 | Replies (40)Comment receiving replies
Hi there! I was the same. One day I'm doing my life, the next day I have no air and am in ICU. They said pneumonia but I had no symptoms! I was sent home too early and with 0 meds or puffers. I TOLD the doctor I still felt something was wrong. Sent home anyway.
2 weeks later I'm in an ambulance, pneumonia came back of course and I'm also septic. They cant find a pulse, blood pressure is way down, kidneys failing and it's not looking good.
I was intubated and sent off to a major hospital on full life support. Had a bronchoscopy and lungs washed. 2 days later I was extubated. No diagnosis. But I'm trying to tell them what I think it is!! No one will listen. I didnt know it then but I have severe GERD. At night the acid travelled up my esophagus and I'd wake choking on this horrific acid. I could hear it gurgling in my lungs! I'd walk around and cough and cough it up best I could. I'd take tums, pepto, but it didnt work. Obviously I'd aspirated on all this acid and pneumonia resulted. My doctor said no it wasnt aspiration pneumonia because that only happens to stroke victims or the elderly. I was given a long course of amoxi clav and began to improve and was sent home to await my next ct scan, in 3 months and an appt with the pulmonologist in 4 months.
The ct showed much improvement. The pulmonologist diagnosed aspiration pneumonia with ARDS. He then told me I have a hiatus hernia but he only "does lungs" so I have to discuss the hernia with my gp. So he told me a bit about ARDS, said I was lucky, and he'd call to do the physical follow up tests. That's it. So I'm still a bit in the dark and of course afraid. Is this gonna happen again? Dare I venture too far from a hospital? I still hear minor crackles, what's that? Not many took time to answer my questions so of course I'm uninformed. I don't trust google much. They have conflicting answers in the same article! I'm depressed at the loss of my carefree energetic life, freaked out from 2 ICU stays and being intubated and on a vent. I've joined a couple other groups on here but they are over 2 years old and dont seem active. I'm just lost right now except grateful to have a diagnosis...finally. any help would be appreciated! Thanks!
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A relative recently got very sick. At the ER they found his white count very elevated. They started doing cultures of his blood to look for infection. Strep, and another infection were found, but they couldn't trace the site. They did special heart tests to rule out infection involving his heart. He was put in IC care for a few days because his blood pressure was dropping too low. He was infused with different antibiotics. When his white count went back to normal range (about a week in the hospital), he went home. He had to go in for bloodwork a week or so later to do cultures again to make sure the infection was gone. It took five days to get the results, and the infection was gone. They never found the site of infection. He didn't really have a fever, just terrible chills, and shaking. He got to the ER the same day, and they said it was a good thing. Odd stuff. He had diverticulitis for many years, and was due a scoping. Abdominal CT showed some intestinal inflammation, but it was ruled out as a cause. He'll have GI follow-up later. I guess he's fine now, but tires easily. The hospital he went to had an excellent infections disease staff since they were a teaching hospital.
It must be a scary experience, one you don't want to have to worry about all the time. Can you find a teaching facility that will let you come in for a second opinion? If this relative got through this, and passed his follow-up culture tests, it must be something that is successfully treated with the proper medical care. It sounds like they got right on top of things.