After ICU and ventilation

Posted by cindyvag @cindyvag, Fri, Jul 5 12:21pm

Hi all, i am new but felt i needed more answers and help. I was misdiagonosed on 13th June 2019 with pharangitis and was then rushed to icu with influenza a, pneumonia and bronchitis. I was in ICU on a ventilator for 10 days and ive been out of hospital for a week and a bit. My worries are and i hope someone can maybe relate and tell me its normal, i get pain in my chest which moves around and in my back and neck. Im generally weak and very shakey and now get terrible headache but in my back of my head. Doctor said all is good and i am going to feel like this for a while up to 6 weeks even. Why though i dont understand and feeling anxious about it

Hi Cindy, welcome to Connect. I can imagine that you are feeling anxious about the continuing sensations you're experience after having been in ICU on a ventilator. I'm tagging @kariulrich @jslate @usmccam @amandacgrow @plexiclone @seanne and @melthomas on this discussion as they may have experiences to share with you.

One thing I do know is that you're not alone. Post ICU syndrome is real. You can read more about it in this blog by @andreab https://connect.mayoclinic.org/page/pics/

Cindy, be kind to yourself. You've been through a lot and it will take time to adjust. Are you perhaps trying to do too much, too soon? What brings on the headaches and what do you do to help alleviate them?

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@colleenyoung

Hi Cindy, welcome to Connect. I can imagine that you are feeling anxious about the continuing sensations you're experience after having been in ICU on a ventilator. I'm tagging @kariulrich @jslate @usmccam @amandacgrow @plexiclone @seanne and @melthomas on this discussion as they may have experiences to share with you.

One thing I do know is that you're not alone. Post ICU syndrome is real. You can read more about it in this blog by @andreab https://connect.mayoclinic.org/page/pics/

Cindy, be kind to yourself. You've been through a lot and it will take time to adjust. Are you perhaps trying to do too much, too soon? What brings on the headaches and what do you do to help alleviate them?

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Hi Colleen, thank you. Headache is actually more of a pressure pain if i cough for example. What worries me is the strange chest and back pains that come and go. I might be doing to much but i have no choice as my boss wants me back at work monday and made it very clear i best be back:(

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@cindyvag

Hi Colleen, thank you. Headache is actually more of a pressure pain if i cough for example. What worries me is the strange chest and back pains that come and go. I might be doing to much but i have no choice as my boss wants me back at work monday and made it very clear i best be back:(

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@cindyvag I am glad you found this site and am hopeful that you will find comfort through the support of others in this group. You have certainly been through a very harrowing past month. Being that sick and on a ventilator for that length of time is no small thing. It often takes people many weeks – even months – to regain a sense of "normalcy". In regards to the pain you are experiencing – chest, neck and headache – the first recommendation is always to make sure you have spoken to your primary provider about these concerns so any serious causes can be ruled out. It seems as though you may have already taken this step. It is not uncommon to experience physical pain, fatigue, weakness etc. for a prolonged time period after critical illness. Your chest, back and neck pain may be connected to your diagnosis of pneumonia and prolonged ventilation and bedrest. After ruling out serious causes, you may find it helpful to work with a physical therapist who can guide you in exercises to aid in your recovery. This may be a referral that you need to ask your provider for.

I also want to address your work return to work. It is not uncommon at all for people to experience a delay in return to work especially following a serious critical illness such as what you experienced. It is difficult at times for others to fully understand what you are going through in your recovery as physically you likely don't seem much different on the outside. People look at you and think you should snap right back to normal now that you are out of the hospital. The truth is that this is a very unrealistic expectation and that recovery from critical illness is a process that cannot be rushed. I once had a post-ICU patient tell me that he would bring a cane with him out in public as an outward symbol that we was still recovering – even though he didn't need a cane! It was something people could see and understand much easier.
I am not sure of your circumstances with work, but I would strongly encourage you contact your primary care provider and have a discussion about the options for a best plan for return to work. Primary care providers can be very helpful with developing plans for this.

This is a fantastic group and I am looking forward to hearing other's words of support for you. Take care of yourself.

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@andreab

@cindyvag I am glad you found this site and am hopeful that you will find comfort through the support of others in this group. You have certainly been through a very harrowing past month. Being that sick and on a ventilator for that length of time is no small thing. It often takes people many weeks – even months – to regain a sense of "normalcy". In regards to the pain you are experiencing – chest, neck and headache – the first recommendation is always to make sure you have spoken to your primary provider about these concerns so any serious causes can be ruled out. It seems as though you may have already taken this step. It is not uncommon to experience physical pain, fatigue, weakness etc. for a prolonged time period after critical illness. Your chest, back and neck pain may be connected to your diagnosis of pneumonia and prolonged ventilation and bedrest. After ruling out serious causes, you may find it helpful to work with a physical therapist who can guide you in exercises to aid in your recovery. This may be a referral that you need to ask your provider for.

I also want to address your work return to work. It is not uncommon at all for people to experience a delay in return to work especially following a serious critical illness such as what you experienced. It is difficult at times for others to fully understand what you are going through in your recovery as physically you likely don't seem much different on the outside. People look at you and think you should snap right back to normal now that you are out of the hospital. The truth is that this is a very unrealistic expectation and that recovery from critical illness is a process that cannot be rushed. I once had a post-ICU patient tell me that he would bring a cane with him out in public as an outward symbol that we was still recovering – even though he didn't need a cane! It was something people could see and understand much easier.
I am not sure of your circumstances with work, but I would strongly encourage you contact your primary care provider and have a discussion about the options for a best plan for return to work. Primary care providers can be very helpful with developing plans for this.

This is a fantastic group and I am looking forward to hearing other's words of support for you. Take care of yourself.

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Thank you so much annie. We are in south africa and the doctors booked me off until 8th july and said i must see how i do. Issue is that i just started this job after being retrenched so i cannot afford to lose the job. Thank you so much for the above i actually needed to read what you said as you start thinking the worse even though doctor said all is good. I get a little pain now and i get completely frazzled because i was misdiagonosed so now i constantly feel conflicted by what doctor says and what i feel..

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Hi all been back at work 3 days, i personally am battling my body is so sore and i am tired by 14;00. My managers seem to care less that i was in critical care and almost lost my life and told me i best be positive…. who says that to someome who almost lost their life? Of course im positive because i appreciate life so much more now.
Anyways i am hoping my body just recovers quickly as i am really struggling with working after being released on the 25th june and only staying home one week before returning 🙁

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@cindyvag

Hi all been back at work 3 days, i personally am battling my body is so sore and i am tired by 14;00. My managers seem to care less that i was in critical care and almost lost my life and told me i best be positive…. who says that to someome who almost lost their life? Of course im positive because i appreciate life so much more now.
Anyways i am hoping my body just recovers quickly as i am really struggling with working after being released on the 25th june and only staying home one week before returning 🙁

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Oh my gosh, @cindyvag that must be so challenging. Might it be possible to visit with your doctor and request that he sign a longer leave of absence from work?

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@colleenyoung

Oh my gosh, @cindyvag that must be so challenging. Might it be possible to visit with your doctor and request that he sign a longer leave of absence from work?

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Hi Colleen, it would not help as my manager could careless. Ive come to terms with it

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@cindyvag

Hi Colleen, it would not help as my manager could careless. Ive come to terms with it

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@cindyvag
Hi Cindy, I hope I'm doing this correctly. My first time on this blog. I read about your situation and hope the little I say can help a little. First of all I must tell you that most of what I know about was told to me from my husband, sons and friends. I was in such back pain I took a pain med that I had never taken before. It was Dilodid (sp). I was allergic to it and had a very bad reaction. To make a long story short, I was in ICU for 6 weeks, then 2 weeks on a regular nursing floor. That was 13 months ago. I was on a ventilator on and off for for several weeks. When I was off of it I had a tracheotomy tube. I still have it. Luckily I am in the 20% that made it out of the hospital. Most don't. They stopped counting the times I was code blue, I think that is the right term for not breathing. It was at least 12 different times. I am always sore in my back and neck, all of my muscles feel useless and sore, I still have that and headaches, dizziness, I wobble when I walk. hopelessness, my short term memory is gone, I can not form sentences and have a really hard time thinking of the correct words to say in a conversation. At first I used a wheel chair, then a walker and now I use a cane. I am extremely exhausted all the time, I cannot walk to the bathroom from the kitchen without gasping for air. If I try to do "something, anything" I am down for the count for a few days. I certainly hope you can resolve this.I didn't know anything about this syndrome until yesterday. I happen to have gone in to see the doctor that took care of me in the ICU. He just happened to read something about it. I'm not sure any of this will help but it sure made me feel better for having found this site to know I'm not alone. I know there is more but I can't think of it.

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@cindyvag

Hi all been back at work 3 days, i personally am battling my body is so sore and i am tired by 14;00. My managers seem to care less that i was in critical care and almost lost my life and told me i best be positive…. who says that to someome who almost lost their life? Of course im positive because i appreciate life so much more now.
Anyways i am hoping my body just recovers quickly as i am really struggling with working after being released on the 25th june and only staying home one week before returning 🙁

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I've been thinking of you all week @cindyvag knowing that you went back to work on Monday. I am sorry that you are in the position you are in with your employer. But I am encouraged that you are choosing to hold on to a positive outlook on this. I am hopeful that you can continue to find support through this site that may be unavailable to you through other avenues. Also continue to check back on our blog. I will be updating this monthly – our series right now is discussing life beyond the ICU. We will discuss topics like exercise, nutrition, stress relief, etc. that can all help aid in recovery. I think you will find these posts helpful!

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@smoky

@cindyvag
Hi Cindy, I hope I'm doing this correctly. My first time on this blog. I read about your situation and hope the little I say can help a little. First of all I must tell you that most of what I know about was told to me from my husband, sons and friends. I was in such back pain I took a pain med that I had never taken before. It was Dilodid (sp). I was allergic to it and had a very bad reaction. To make a long story short, I was in ICU for 6 weeks, then 2 weeks on a regular nursing floor. That was 13 months ago. I was on a ventilator on and off for for several weeks. When I was off of it I had a tracheotomy tube. I still have it. Luckily I am in the 20% that made it out of the hospital. Most don't. They stopped counting the times I was code blue, I think that is the right term for not breathing. It was at least 12 different times. I am always sore in my back and neck, all of my muscles feel useless and sore, I still have that and headaches, dizziness, I wobble when I walk. hopelessness, my short term memory is gone, I can not form sentences and have a really hard time thinking of the correct words to say in a conversation. At first I used a wheel chair, then a walker and now I use a cane. I am extremely exhausted all the time, I cannot walk to the bathroom from the kitchen without gasping for air. If I try to do "something, anything" I am down for the count for a few days. I certainly hope you can resolve this.I didn't know anything about this syndrome until yesterday. I happen to have gone in to see the doctor that took care of me in the ICU. He just happened to read something about it. I'm not sure any of this will help but it sure made me feel better for having found this site to know I'm not alone. I know there is more but I can't think of it.

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Thank u so much smoky, wow you have been through sooooo much. I feel better reading your msg as i think most of my issue is also negative thoughts in my mind about pain in chest, so i assume heart attack without noting that i might have acid reflux as its been going on for a while, back pain as you say from being on my back in icu all these little pains become bigger because mentally i think icu plays a huge role in it…. i do hope you are ok now?

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@andreab

I've been thinking of you all week @cindyvag knowing that you went back to work on Monday. I am sorry that you are in the position you are in with your employer. But I am encouraged that you are choosing to hold on to a positive outlook on this. I am hopeful that you can continue to find support through this site that may be unavailable to you through other avenues. Also continue to check back on our blog. I will be updating this monthly – our series right now is discussing life beyond the ICU. We will discuss topics like exercise, nutrition, stress relief, etc. that can all help aid in recovery. I think you will find these posts helpful!

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Awww thanks annie, thats really kind of u.

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