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Posts (104)

Oct 28, 2019 · Save The Date: Patient Education Day at Mayo Clinic in Post Intensive Care Syndrome (PICS)

                            You are invited!

Please consider joining us for this unique opportunity to learn about Acute Respiratory Distress Syndrome and Critical Illness Recovery. This is a free one-day event designed to bring together patients, clinicians, and patient advocates to learn more about these important topics. This event is being held live in-person as well as available via webinar (more details regarding webinar coming soon).

To sign up see the following link: Connect Calendar



Sep 15, 2019 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@alex12119 I am grateful to you for having the courage to share your story and for trusting us with it. I am also grateful for this community that has been built to help each other. There is a power in being able to witness and normalize things in this life that are beyond our imagining, and being able to do that together is even more powerful. I am glad you are here.

Aug 3, 2019 · What did you find most surprising once you were out of the ICU? in Intensive Care (ICU)

@seanne what incredible testimony to the power of Peer Support! Thank you for your words –

Aug 3, 2019 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@kristap31 thank you so much for sharing your family's story with all of us. I can connect with you from a parent/patient perspective when you say "no one even asks how that PICU stay and my baby's near death affected me". When my son nearly arrested in the ED and ended up in the ICU for 4 days a year and a half ago it all seemed so surreal. But when we left the hospital, we did not have any follow up appointment scheduled for over a month! I was shocked. Coincidentally I had an appointment for myself with our Family Med MD 5 days later. We spent my whole appointment talking about my son's event and we cried and cried and cried together. It was a huge debrief and connection that I needed SO badly at that moment. I don't know what I would've done if I had had nobody from the medical team to talk to for a month! But you are so right – people just don't think about it and don't understand that need to connect and debrief and even to just cry.

Jul 11, 2019 · 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!

Jul 11, 2019 · 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

Jul 10, 2019 · 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?

Jul 7, 2019 · 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!