ARDS Support: my story and looking to help other survivors
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.