← Return to ARDS Support: my story and looking to help other survivors

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@donna562

Steve, I appreciate what you've written re: what life was like for the first 5 years, and where you are now. It sounds like I should talk with my pulmonologist about my plan to return to working in the office; my job can almost completely be done from home and I can avoid the setbacks that you had re: illness.

It struck me that you started this thread over a year ago, but only a few people have added comments. It took a minute to register that there aren't many ARDS survivors, at least not the severe cases that require a ventilator. Covid-19 was definitely the cause of my ARDS, and I was on the vent for 49 days last summer (late May-mid-June). Like you, I find helping others to be a great part of what makes my ordeal "worth it"; I moderate a small group for Covid ICU survivors on Reddit. Thank you for posting here, and being willing to share your experiences. Can you think back to when you felt you were "mostly" recovered, and let me know what you wish you knew then?

I am just now, 9 months out from ICU discharge, wrapping up the last stage of meeting my goals for rehab. I wonder what should I do next to continue making progress, especially with regard to memory. I definitely turned into Dory (the forgetful fish from Finding Nemo) while fighting for oxygen. I'd appreciate any tips you would like to share!

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Replies to "Steve, I appreciate what you've written re: what life was like for the first 5 years,..."

Donna, I'm tagging @plexiclone and @jready to make sure they see your great post and questions. You're so right that there are few ARDS survivors, especially the severe cases that needed ventilation.

You seem like an organized and motivated person, Donna. I love how you state "I'm …wrapping up the last stage of meeting my goals for rehab." Can you share what your goals were and some of the challenges and milestones you were able to celebrate?

@donna562 First let me say congratulations on being a survivor and working through your recovery. I have read what you and Steve have gone through and I am inspired at how far you both came. One of the things I still (3 months after ICU stay) is seeing myself as truly being critically ill. Yes I had ARDS. Yes I was in the ICU. Yes I was on a ventilator. However I was only on a ventilator for 2 days and in the ICU for 4 days. I feel very lucky that I was not any worse.

I am finally motivated to make 2021 the year I start taking care of myself. I was also diagnosed with type 2 diabetes during my hospital stay. So I am adding diet and exercise into my recovery plan. I still have good and bad days. Some days I can actually clean the house or go for a walk or something. Some days I walk up a flight of stairs and still struggle for breath at the top and a heart rate of 130 or higher.

I have also felt very forgetful since the ICU. I have downloaded an app that has daily puzzles likes crossword and other mind puzzles. I also try to take 5 minutes every day and recall as much as I can from something long ago. For example I might try to remember all the actors in a movie I watched 10 years ago. Or run through all the names of my elementary school teachers. Just a little something that might "trigger" my brain to dig deep and find that old stored information.

Hi Donna! Congrats surviving COVID and ARDS!!
I don’t really remember an “ah ha” moment per se but I do remember realizing that others were giving me all their colds and various short term illnesses and that I had to be the vigilant person in the friendship. It was reinforced this past winter when I had my first winter since 1999 without bronchitis or a respiratory infection largely due to most everyone wearing a mask.

Hello @donna562 ! I wanted to respond to your question re: what to do next for your memory. @jready had some really great tips below. Anything that stimulates your brain is helpful – crosswords, puzzles, games/apps on a phone or tablet, reading, etc. If you really feel stuck and if your memory difficulties are causing you daily troubles or are interfering with your life, consultation with an Occupational Therapist can also be helpful. You may have already worked with this team, but if not it might be something to discuss with your primary care provider.