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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 @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 survivor, please share.
Steve

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

paqf67survivor | @paqf67survivor | Jan 24, 2023

Hello Steve, found this site today, so glad you survived your ARDS. I to had gotten sick in Jan. 2014, started out being sick they say with pneumonia which turned into full blown ARDS. I still can't remember most of my journey with it. I only know what my husband and daughter tell me. It was bad and I came close to dying, was on a ventilator, had a brain bleed. Air lifted from the local hospital down to the U of M in Minneapolis. God had my back and provided some really good doctors and nurses for me. I have wondered how other people handle this in their lives, I still have balance and vision and don't feel like anyone really understands me. Some doctors here in Minnesota don't even know what ARDS is! So when you go to see one you find yourself having to explain what ARDS is and they don't fully understand what your problem could be. Would be wonderful to have someone to understand my situation. I really could've used some better rehabilitation, but doing the best I can. Also hard when family does not fully get what the trauma was like that you go through. Pray that all the survivors are doing well here. Hoping to learn more about the outcome for many people. Just helps to hear that others are out there.
Thanks, PF

REPLY
lorilwd | @lorilwd | Mar 11 9:32pm

Hello and everyone,
My name is Lori. Im 63. I was intubated in July 2023 for 14 days due to my lungs bleeding. I take warfarin because I have a mechanical heart valve. I had a lung biopsy and my lung wouldn't stop bleeding. I woke up and couldn't walk, use my arms or anything. I could only move my head. Scary stuff. After 7 weeks of hospital and rehabilitation I finally came home.
I'm making progress. But its very slow. I can walk about 3/4 of a block before I need to sit down. I loose my breath with everything I do. Showers are still very tiring. I'm on oxygen at night and sometimes during the day. I keep myself busy by keeping moving and I now paint. Since I woke up, and can use my hands arms again, I took up painting. And I'm good at it. It's very strange, but I'll just go with it. Lol
So for all of you Vetetns to ARDS , does the becoming out of breath get better? And how long did it take to recover to a point that you felt good and somewhat normal?

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 17 3:27pm
In reply to @lorilwd "Hello and everyone, My name is Lori. Im 63. I was intubated in July 2023 for..." + (show)
@lorilwd

Hello and everyone,
My name is Lori. Im 63. I was intubated in July 2023 for 14 days due to my lungs bleeding. I take warfarin because I have a mechanical heart valve. I had a lung biopsy and my lung wouldn't stop bleeding. I woke up and couldn't walk, use my arms or anything. I could only move my head. Scary stuff. After 7 weeks of hospital and rehabilitation I finally came home.
I'm making progress. But its very slow. I can walk about 3/4 of a block before I need to sit down. I loose my breath with everything I do. Showers are still very tiring. I'm on oxygen at night and sometimes during the day. I keep myself busy by keeping moving and I now paint. Since I woke up, and can use my hands arms again, I took up painting. And I'm good at it. It's very strange, but I'll just go with it. Lol
So for all of you Vetetns to ARDS , does the becoming out of breath get better? And how long did it take to recover to a point that you felt good and somewhat normal?

Jump to this post

Welcome @lorilwd, I'm tagging fellow ARDS members like @paqf67survivor @plexiclone @jready @donna562 @giffordtheresarev @lsljlllove3711 @susanop @angharadijp @paqf67survivor to join me in welcoming you to the group.

You're asking good questions about recovery. While everyone is different, it can help to hear how others recovered and coping strategies they developed.

It's is hard to remain patient when recovery progresses so slowly. With the items you listed like walking 3/4 of the block and resting, showers being tiring, etc. Do you remember a time when you couldn't walk 3/4 of the block or when showering was impossible? Has their been progress?

I'm also curious about your new found activity of painting. I'm sure it's enjoyable and therapeutic. Is this a new discovery of a talent that was always there but lay dormant? What type of painting do you do?

REPLY
1 reply
susanop | @susanop | Mar 17 3:39pm

Steve, I had ARDS and septic shock in November 1999 -- just a month after you did. Eight days on a vent, a month at Northwestern Memorial Hospital in Chicago, 19 pulmonary embolisms -- all after I went in for an amniocentesis. Septic shock and ARDS killed the baby and almost killed me. So I had that loss to contend with as well. It took me two years to recover and sometimes I still feel like a ghost of my former self. I had no one to talk to who could understand what I was feeling either. It was devastating, but I also realize that I got another chance at life, and I'm grateful that I was at a major teaching hospital with the expertise to save me. It's been a lonely journey, so I mostly try to put it behind me and live each day fully. I was 42 at the time and I'm now 66 -- I consider all of these extra years my "gravy round." The only silver lining is that I do appreciate every extra day that I've gotten. So glad there is this group -- I hope we can all stay in touch with one another. We all need this touchstone. Thanks for writing your story.

REPLY
susanop | @susanop | Mar 17 3:50pm
In reply to @lorilwd "Hello and everyone, My name is Lori. Im 63. I was intubated in July 2023 for..." + (show)
@lorilwd

Hello and everyone,
My name is Lori. Im 63. I was intubated in July 2023 for 14 days due to my lungs bleeding. I take warfarin because I have a mechanical heart valve. I had a lung biopsy and my lung wouldn't stop bleeding. I woke up and couldn't walk, use my arms or anything. I could only move my head. Scary stuff. After 7 weeks of hospital and rehabilitation I finally came home.
I'm making progress. But its very slow. I can walk about 3/4 of a block before I need to sit down. I loose my breath with everything I do. Showers are still very tiring. I'm on oxygen at night and sometimes during the day. I keep myself busy by keeping moving and I now paint. Since I woke up, and can use my hands arms again, I took up painting. And I'm good at it. It's very strange, but I'll just go with it. Lol
So for all of you Vetetns to ARDS , does the becoming out of breath get better? And how long did it take to recover to a point that you felt good and somewhat normal?

Jump to this post

Lori, it took me a couple of years to feel normal again. I was 42 at the time (I'm now 66). It was really about baby steps. The body takes a long time to heal from an assault like that; the capillaries in my lungs were bleeding as well. I saw a pulmonologist for 2 years. But after that, I slowly began exercising again and went on to weight train and run half marathons. These days I'm still running and weight training. But when I got out of the hospital, I couldn't keep up with my 80-year-old father. It was very depressing because I didn't know if I'd feel like that forever. So this is to reassure you. Nurture yourself, eat healthy food, listen to your body, sleep, and avoid stress. If you have other questions, please feel free to reach out to me as often as you need to. Not too many people understand what it's like to be an ARDS survivor. Or the PTSD most of us still feel. (Every time I have to go in for an invasive test, I'm a wreck: My ARDS was from e-coli blood poisoning from an amniocentesis so any invasive test unmoors me now.) You made it through a really frightening medical crisis. Thankfully you are on the other side and the healing will come.

REPLY
2 replies
lorilwd | @lorilwd | Mar 17 5:37pm
In reply to @colleenyoung "Welcome @lorilwd, I'm tagging fellow ARDS members like @paqf67survivor @plexiclone @jready @donna562 @giffordtheresarev @lsljlllove3711 @susanop @angharadijp..." + (show)
@colleenyoung

Welcome @lorilwd, I'm tagging fellow ARDS members like @paqf67survivor @plexiclone @jready @donna562 @giffordtheresarev @lsljlllove3711 @susanop @angharadijp @paqf67survivor to join me in welcoming you to the group.

You're asking good questions about recovery. While everyone is different, it can help to hear how others recovered and coping strategies they developed.

It's is hard to remain patient when recovery progresses so slowly. With the items you listed like walking 3/4 of the block and resting, showers being tiring, etc. Do you remember a time when you couldn't walk 3/4 of the block or when showering was impossible? Has their been progress?

I'm also curious about your new found activity of painting. I'm sure it's enjoyable and therapeutic. Is this a new discovery of a talent that was always there but lay dormant? What type of painting do you do?

Jump to this post

Hi Colleen,
Thank you responding. I do remember not being able to walk very far. I am making progress. I just get frustrated at times because it's such a slow recovery. But I never quit pushing forward.
And it's funny you ask about my painting. My Mom was an oil painting Artist. She did teach me a few things about 20 years ago. I just never was very good at it. But now! I'm shocked at what I am painting. I can't stop painting. Every day, I will paint. Yesterday I started a new painting with Mountains, a forest a lake. It's crazy! And I'm really pretty good.

REPLY
lorilwd | @lorilwd | Mar 17 5:48pm
In reply to @susanop "Lori, it took me a couple of years to feel normal again. I was 42 at..." + (show)
@susanop

Lori, it took me a couple of years to feel normal again. I was 42 at the time (I'm now 66). It was really about baby steps. The body takes a long time to heal from an assault like that; the capillaries in my lungs were bleeding as well. I saw a pulmonologist for 2 years. But after that, I slowly began exercising again and went on to weight train and run half marathons. These days I'm still running and weight training. But when I got out of the hospital, I couldn't keep up with my 80-year-old father. It was very depressing because I didn't know if I'd feel like that forever. So this is to reassure you. Nurture yourself, eat healthy food, listen to your body, sleep, and avoid stress. If you have other questions, please feel free to reach out to me as often as you need to. Not too many people understand what it's like to be an ARDS survivor. Or the PTSD most of us still feel. (Every time I have to go in for an invasive test, I'm a wreck: My ARDS was from e-coli blood poisoning from an amniocentesis so any invasive test unmoors me now.) You made it through a really frightening medical crisis. Thankfully you are on the other side and the healing will come.

Jump to this post

Hi Susan,
Oh my Gosh you can do so much now! That's great news! We have 7 mile race in May here called " Blooms Day" I walked it a few times. I want to enter it again. And my goal is to enter in next year.
Yesterday, I did a lot of active chores. I was so tired by the afternoon, I cried. Which is what my body does now when I get to tired, I cry...lol...it just happens. Today, I'm just taking it easy and resting.
But, it really is so hard when my mind says let's do this and my body... noway. But we have to keep pushing through it to get better. After reading through these posts, and yours as well, I feel hopeful.
Thank you so much.

REPLY
plexiclone | @plexiclone | Mar 18 11:34am
In reply to @susanop "Lori, it took me a couple of years to feel normal again. I was 42 at..." + (show)
@susanop

Lori, it took me a couple of years to feel normal again. I was 42 at the time (I'm now 66). It was really about baby steps. The body takes a long time to heal from an assault like that; the capillaries in my lungs were bleeding as well. I saw a pulmonologist for 2 years. But after that, I slowly began exercising again and went on to weight train and run half marathons. These days I'm still running and weight training. But when I got out of the hospital, I couldn't keep up with my 80-year-old father. It was very depressing because I didn't know if I'd feel like that forever. So this is to reassure you. Nurture yourself, eat healthy food, listen to your body, sleep, and avoid stress. If you have other questions, please feel free to reach out to me as often as you need to. Not too many people understand what it's like to be an ARDS survivor. Or the PTSD most of us still feel. (Every time I have to go in for an invasive test, I'm a wreck: My ARDS was from e-coli blood poisoning from an amniocentesis so any invasive test unmoors me now.) You made it through a really frightening medical crisis. Thankfully you are on the other side and the healing will come.

Jump to this post

Hi Lori,
I agree with everything Susan said 100%. It’s a tough road but you made it!
Steve

REPLY
1 reply
lorilwd | @lorilwd | Mar 20 1:02pm
In reply to @plexiclone "Hi Lori, I agree with everything Susan said 100%. It’s a tough road but you made..." + (show)
@plexiclone

Hi Lori,
I agree with everything Susan said 100%. It’s a tough road but you made it!
Steve

Jump to this post

Hi Steve,
Thank you so much for responding back. If I could just get over the short of breath part, I would be much better...

REPLY
1 reply
plexiclone | @plexiclone | Mar 21 10:37am
In reply to @lorilwd "Hi Steve, Thank you so much for responding back. If I could just get over the..." + (show)
@lorilwd

Hi Steve,
Thank you so much for responding back. If I could just get over the short of breath part, I would be much better...

Jump to this post

Hi Lori,

The shortness of breath will get better in time. You will probably need to see a pulmonologist at some point in your recovery.

Steve

REPLY
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