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ARDS Support: my story and looking to help other survivors
Intensive Care (ICU) | Last Active: Mar 21, 2024 | Replies (40)Comment receiving replies
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?
Replies to "Hello and everyone, My name is Lori. Im 63. I was intubated in July 2023 for..."
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.
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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?