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3 days ago · After ICU and ventilation in Intensive Care (ICU)

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!

4 days ago · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@ctenley thank you for sharing your story. I am sorry to know that you are going through this but am glad you have found this community of support. You will find by reading these posts that you are certainly not alone. There is a great ICU Recovery Center at Vanderbilt in Nashville that I think you might be very interested in. They have an amazing group including a psychiatrist on their team who has been a lead researcher regarding post-ICU recovery. Here is a link to their information: https://www.icudelirium.org/the-icu-recovery-center-at-vanderbilt

4 days ago · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

Welcome to the discussion @smoky – I am glad you found us! You will likely see by reading through the many posts on here your feeling of being "crazy" is shared by so many others. Just knowing there are others out there – many others in fact – who have experienced what you are experiencing can be healing in itself. What are some of the symptoms of PICS that you are experiencing if you feel open to sharing with us?

Sun, Jul 7 8:39am · Cardiac ICU Nurses in Hypertrophic Cardiomyopathy (HCM)

@sheim it is so nice to hear about your great experience with the ICU nursing staff. I can't say I am surprised by this – but it is always great to hear :)! The suggestions by others on this thread are great. I will add that I know not much makes ICU nurses happier than to see our former patients out in the world enjoying their lives. A personal visit back to the ICU just to wave and say hi or thanks does wonders for the team. That is not always possible as many of our patients travel from far distances, so thank you cards with pictures of healthy smiling faces is also very appreciated!

Sun, Jul 7 8:31am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@janegigi your statement that "Our lives are before the ordeal and after ordeal" couldn't be more true. This is something expressed by so many people who have experienced critical illness. You are also not alone in feeling isolated during your recovery where people seem to tire of discussing your experience. Your suggestion of therapy and willingness to do this for yourself is so important.

Sun, Jul 7 8:28am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@kristap31 I am very glad you have found this group and thank you for sharing your story. You bring up such a powerful point. Families can suffer post-ICU difficulties – just as patients do. When this happens it is known as PICS-family (PICS-F). More about that can be found in this blog post I wrote a little while back: https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-the-family/

You also bring to light something that isn't discussed as often as other topics – and that is dealing with and mourning the loss of those you become close with during the hospitalization. This may be especially true in the pediatric ICUs where lengths of stays can be very prolonged and families lean on each other heavily for support. I know that some ICUs have "reunions" where families come together once a year to reconnect – I wonder if something like that takes place at the hospital you were at? This can be very therapeutic for many people.

It is also so true that finding people who "get it" in regards to the trauma that you all experienced can be very difficult. Sites like this or even face to face support groups can be tremendously helpful. Talking through the experience, working it out with others who have been there, is incredibly important. I am not sure where you are geographically, but here is a link to hospitals around the nation and the world that host such groups in case you may be close to any: https://sccm.org/MyICUCare/THRIVE/Connect-With-Patients-and-Families

Fri, Jul 5 3:29pm · After ICU and ventilation in Intensive Care (ICU)

@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.

Fri, Jul 5 8:57am · Beyond the ICU: Finding Support in Post Intensive Care Syndrome (PICS)

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Everyone experiences critical illness in their own unique way. There are no two courses of illness or trajectories of recovery that will be the same. Issues like vivid dreams/nightmares, delirium, hallucinations, physical pain/weakness, brain “fog”, difficulty with word finding and memory, social isolation, and stress on relationships may be experienced by many people who have been critically ill. Unfortunately many people believe they are experiencing these difficulties in isolation, likely in part due to the fact that most of the people they are surrounded by have not similarly experienced a critical illness. It becomes difficult for a person’s previously established social support network to fully understand what they are going through and how best to help.

Thankfully, in 2015 the Society of Critical Care Medicine (SCCM) identified this issue and attacked it head on. SCCM created a post-ICU Peer Support Collaborative through the THRIVE initiative that has now brought together over 20 different hospitals from around the world that focus on creating support systems for patients and family members who have experienced critical illness. A recent publication from this collaborative illustrates the types of support systems that these hospitals have implemented which include face-to-face community-based, online, and clinic-based models to name a few. It has been very clear through the experiences of the collaborative that patients and families can benefit greatly through these support systems.

The overarching message that needs to be shared is this: you are not alone. Despite the uniqueness of all illness and recovery trajectories, many people find commonalities within their experiences. Sharing these experiences with others who have experienced critical illness can lead to validation, comfort, and healing.

So explore the resources that are available to you. Ask members of your critical care team if they know of any local post-ICU support groups or resources for you access. Mayo Clinic is very happy to provide an online support group for patients and families who have experienced critical illness  – available 24/7 to all. The support group can be found by clicking the following link: Intensive Care (ICU) Support Group

I can’t tell you what a blessing this group has been to me. The advice and suggestions for sure, but late at night when the fear comes back…I reread the posts and here is proof things do get better.”    – Group participant

Other resources can be found on SCCMs website through the THRIVE network: Connect with Patients and Families

 

Come back soon and join further discussions about what to expect Beyond the ICU.

In the meantime, join our conversation online. Have you or a loved one experienced critical illness/injury? You’re not alone. Share your story and connect with others who have been on the same journey: Intensive Care (ICU)