ARDS Support: my story and looking to help other survivors

Posted by plexiclone @plexiclone, Tue, Apr 28 9:57pm

Hello Everyone!
My name is Steve and I’m an ARDS survivor. I contracted acute respiratory distress syndrome (ARDS) in October of 1999. I was 34 and in excellent shape with no other major health. I probably got ARDS from sepsis due to my appendix being removed emergently. I was on the ventilator for a short period of time, I don’t remember exactly how many days and my family doesn’t recall either, but it wasn’t more than 2 weeks.

I returned home to a changed life. I had a basic idea of what ARDS was but I had no idea about it’s complexities. I couldn’t even walk to the mailbox without being completely out of breath. A month earlier I had played in an adult hockey tournament; 4 games in 48 hours. The change in my body was devastating to me psychologically and physically. On the one hand, I was extremely grateful to my health care team for helping me survive ARDS, on the other hand, it was extremely frustrating to be struggling to walk up a flight of stairs. Ultimately it took a good 5 years before I could work a full day without having to do nebulizers during the work day.

I think one of the most difficult aspects of surviving ARDS was that I only knew of one other ARDS survivor and that person wasn’t willing to discuss his experience with me. It wasn’t until I found an ARDS support group on social media that I found other survivors. I realized these other ARDS survivors had many of the same experiences that I did. The other thing I discovered was that I had Post ICU Syndrome; that was an eye opener! So many things made sense after that discovery. Thanks to Annie Johnson NP @andreab for starting the Post ICU Syndrome Survivors Support Group (https://connect.mayoclinic.org/group/intensive-care-icu/); I learned I was pretty normal for an ICU survivor.

If anyone here is an ARDS survivors here don’t hesitate to send me a message.
Steve

Steve, I'm really glad you started this discussion for survivors of acute respiratory distress syndrome (ARDS). As this article from Mayo Clinic confirms (https://www.mayoclinic.org/diseases-conditions/ards/symptoms-causes/syc-20355576):
"Many people who develop ARDS don't survive. The risk of death increases with age and severity of illness. Of the people who do survive ARDS, some recover completely while others experience lasting damage to their lungs."

That is a very grim message to read. But here you are! And offering support for others who may be out there not know where they can turn.

You mention that it took 5 years of rehabilitation to be able to do a full day's work and you were a healthy 34 year old pre-surgery. That must've been really tough and, of course, life-changing.

Did your employer make accommodations for you during that rehab period while you got your strength back? How are you doing today, 20 years after getting ARDS?

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Thanks for the kind words Colleen. My employer saw me on the ventilator so they knew how serious my illness had been. I returned to work after 6 weeks off and went directly back to full time shifts. My employer, and some really nice colleagues, set up a place for me to do nebulizer treatments during the day. I would do a nebulizer once I got to work, then another one around mid-shift and sometimes another close to the end of my shift. The biggest problem I had wasn’t only doing my job, it was that once I got home I had to rest before I could do anything around the house; doing both felt like it was killing me. The first two years were beyond awful; I wouldn’t wish it on anyone. I was sick for most of it with one respiratory bug after another because my immune system was compromised due to the sepsis. I had to learn that my new life meant that my body couldn’t fight off illnesses carried by others at work.
20 years later my life is probably better than most ARDS survivors but there have been some bumps in the road. I now need to take antibiotics for any dental procedures beyond a regular cleaning. 3 years ago I broke a few ribs coughing when I had bronchitis. I leaned the hard way how many people show up to work seriously sick and then gift their bug to me and then I require Prednisone to get my lung function back to baseline. Every time I get sick beyond a cold, it takes many weeks to fully recover. I’m on long term steroids to keep my lung function close to where it was before I had ARDS and I use lots of albuteral to exercise. Every year, usually during the winter, I get really sick for about 6-8 weeks; I’m able to work for the most part but I’m not able to do much outside of work.

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