ARDS Support: my story and looking to help other survivors

Posted by plexiclone @plexiclone, Apr 28, 2020

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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@plexicone Hi Steve, I realize it has been a few years since you posted this but I still want to say thanks for sharing. I was online in the ICU for 4 days and 2 on a respirator with ARDS. Like you, I am not sure what caused my ARDS but my hospital discharge packet said I also had pneumonia. It sounds like you have long term lung damage. That must be a huge change in your life. I have been out of the hospital for about 6 weeks now. Like you, I still have some activities like just walking up 2 flights of stairs that get me totally winded. Glad to hear I am not alone and my post-ICU life is a normal thing for survivors.

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@jready

@plexicone Hi Steve, I realize it has been a few years since you posted this but I still want to say thanks for sharing. I was online in the ICU for 4 days and 2 on a respirator with ARDS. Like you, I am not sure what caused my ARDS but my hospital discharge packet said I also had pneumonia. It sounds like you have long term lung damage. That must be a huge change in your life. I have been out of the hospital for about 6 weeks now. Like you, I still have some activities like just walking up 2 flights of stairs that get me totally winded. Glad to hear I am not alone and my post-ICU life is a normal thing for survivors.

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Hi Jennifer, You're welcome! I didn't meet any other ARDS survivors for 10-15 years after my experience so I felt it was important for newer survivors to know they weren't alone.
My lung damage is well controlled with medication and it has enabled me to have a fairly close to normal life in most areas; without the medications I'd probably be homebound and unable to work. It's going to take time for you to get to a new exercise baseline. Keep exercising and pushing yourself because you have to get your lungs moving everyday.
The first year post ICU can be difficult as your body is different now; things don't work as well as they did before. Your mind is different too. You went through a unique experience as an ICU patient and you will have some triggers that will elicit some memories that will trigger some strong emotions. All of this is normal being post ARDS and post ICU. Don't think you're losing your mind; this normal.
Congrats on surviving and welcome to the club of ARDS and ICU survivors!!

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@plexiclone

Hi Jennifer, You're welcome! I didn't meet any other ARDS survivors for 10-15 years after my experience so I felt it was important for newer survivors to know they weren't alone.
My lung damage is well controlled with medication and it has enabled me to have a fairly close to normal life in most areas; without the medications I'd probably be homebound and unable to work. It's going to take time for you to get to a new exercise baseline. Keep exercising and pushing yourself because you have to get your lungs moving everyday.
The first year post ICU can be difficult as your body is different now; things don't work as well as they did before. Your mind is different too. You went through a unique experience as an ICU patient and you will have some triggers that will elicit some memories that will trigger some strong emotions. All of this is normal being post ARDS and post ICU. Don't think you're losing your mind; this normal.
Congrats on surviving and welcome to the club of ARDS and ICU survivors!!

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Great words to hear. Yes, part of the difficulty for me right now is understanding and allowing myself to know this is going to take a long time. I am so use to only minor illnesses and bouncing back quickly.

Thanks.

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Don’t push yourself too hard on the days you feel good because the next day will be a step back in your recovery. Your new life isn’t a nice linear upward x-y axis that you may have had in your former life. There will be highs and lows and pauses when you catch colds and the like. Go easy on yourself when you’re having a tough day. Look at far you have come and not so much how far you have to go.

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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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@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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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?

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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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@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.

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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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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.

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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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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.

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