ARDS Support: my story and looking to help other survivors

You’re welcome! Yes, you have!!

Wow. I developed ARDS in November 1999 after I developed sepsis from an amniocentesis. I came very very close to dying, lost the pregnancy and spent 8 days on a vent, hemorrhaged 3 times, my veins collapsed, my organs began to shut down and I had 19 pulmonary embolisms. When I was taken out of my medically induced coma, the doctors at Northwestern Memorial Hospital in Chicago could not believe that I had survived it all. Sometimes I wonder if 25 years of being a long-distance runner had made my heart strong enough to make it through? I'll never know. Until I read your post, I haven't known anyone else who survived ARDS, and it was a lonely journey back. Many days I felt like a ghost walking through the world, acting like everything was the same but feeling completely different. Thank you for sharing your story -- I'd love to find out more about your experiences in the years since you had ARDS. Funny that we both had ARDS only weeks apart back in 1999. Susan

Hi Susan,
Congrats on surviving ARDS!! Yours is the top story of survival I’ve read. You had an incredible will to live and I believe your being in great shape helped your survival.
Steve

Dear Steve,
I’m happy I found you/this support group on the www!
My husband caught covid - pneumonia - ARDS. He was placed on a vent for 7.5 weeks and was hospitalised for 4 months. His lung functionality is 38%. We are searching for ways, treatments, solutions to help his lungs heal. There is huge scarring and he is requiring 24/7 supplemental oxygen. He’s at home now and I have been his full time carer. Can you provide me with any links that I can read? Ant specialists that we can visit? Medicines? Top tips? With thanks and appreciation.

Hello,
Congrats to your hubby and big kudos to you for being his full time care giver.
For me it was time; it took time to heal and move forward. I would do a search of studies of post ARDS patient recoveries. I’d try to find a support group too. Facebook has a very good ARDS page with lots of excellent support!
Do you have a pulmonologist? Once I got on some long term lung drugs my quality of life jumped dramatically. Definitely get a consult with a pulmonologist!
The best thing I can tell you is the recovery is baby steps. Lots of days of two steps forward and one step back. Hang in there and keep at it.
Steve

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!

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.

Hello and thank you. There are no teaching hospitals in the area I'm aware of. Our own hospital doesnt even have a renal or a pediatric unit.
Actually during my first trip to the ICU they were confused because my white cell count was normal.
They didnt mention it the second time. That's why this was such a mystery. I had no symptoms. As my son put it "dropped like a sack of potatoes ". I had many tests and a lot of blood drawn.

I would think you could get all your hospital records reviewed. I don't know your insurance situation, but I know Medicare pays for a second opinion. I think Mayo Clinic, or another reputable medical hospital could at least answer your questions if you contact them. These places can request records directly from a past provider with your approval. I hope you find your answers.

Did they draw blood when you initially were seen?

Yes they took blood pretty quickly when I got there. I live in Canada and I believe over half of the people here don't even have a family doctor so getting a second opinion is not easy. As far as finding answers I have been from Doctor to doctor to hospital to hospital to specialist to specialist and there are likely files all over the place. My own GP does not do prenatal care does not deliver babies does not see his patients in hospital and whenever I have a question he refers me to a specialist. I've had this "whatever it is" since August and I really don't have a firm solid answer except from what I've told the pulmonologist and he made a diagnosis just on my telling him what happened and not on actual tests or scans. I figure I'm just going to end up dropping dead