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Wed, Apr 29 8:47am · ARDS Support: my story and looking to help other survivors in Lung Health

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.

Tue, Apr 28 9:57pm · ARDS Support: my story and looking to help other survivors in Lung Health

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

Nov 23, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Yes, October of 1999. I remember a lot of it. When I go to the same ICU with patients my heart rate goes into the 90's. There is a lot of things in our daily lives that never go back to normal. Accepting that and moving on to your new place in life can be difficult after you get out of the ICU. Most of us are terrified of being that sick again and we will do anything to not wind up in the ICU ever again. It can be doubly frustrating for your spouse because you can't do things at the same speed you used to for at least a few months. It's like being a child again as you re-learn things and work on your memory. Spouses and family members get as frustrated as you do when you aren't up to speed.

Nov 23, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Hello Everyone,

I'm an ARDS survivor and I spent a week or so on the ventilator and almost 2 weeks in the ICU. I've had the same issues as nearly everyone in this group, which tells me, we're normal people responding to an abnormal situation. This is a great forum for both patients and caregivers. Lots of good resources here that I wish I had in '99.

Steve

Nov 23, 2018 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Hey Nissi,
I see you have had three respiratory arrests during autumn. Fall and spring are really tough on me because of all the stuff flying around in the air from the farmer's fields as they plant or harvest. Do you live in a rural area? I have to keep the windows closed during harvest and planting seasons so I can breathe a little better since my house has crops on two sides and there are very few wind breaks.
Steve

Nov 23, 2018 · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

My lack of stamina in doing anything. Walking to the shower felt like I ran around the block.