Post-Intensive Care Syndrome (PICS) - Let's talk

Hi, everyone,
Welcome to the new group dedicated to intensive care (ICU), critical care and post intensive care symptoms (PICS).

As this discussion has shown, intensive care is a very unique experience and one that most people are not prepared for. It can have lastly effects to patients and families alike. For this reason, we opening a group specifically about ICU and PICS. All current discussions about ICU, PICS and related topics such as sepsis, delirium, ventilators, etc have been moved to the new group and you will continue to get notifications about the discussions you participate in.

See the new group here: https://connect.mayoclinic.org/group/intensive-care-icu/

- Follow the group
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- Add a reply
- Start a new discussion

If you’re not sure how to do any of these things, see this step-by-step guide https://connect.mayoclinic.org/get-started-on-connect/

In 2014 I got the flu and did NOT get my flu shot. I had the H1N1 influenza strand. What followed was two months of an induced coma fighting Sepsis, Pneumonia, Acute Respiratory Distress Syndrome (ARDS), and multi-organ failure. Every day I feel so fortunate to be alive. I was a healthy young man in the prime of life who just got the flu and faced death. The medical and nursing care I received was incredible. From that experience I became a nurse and completed graduate work in Public Health. I am even doing research right now on how to improve communication barriers of awake-mechanically ventilated patients to improve outcomes. I am a patient-family advisor and share my story in hopes it will make an impact. I'm moving on towards doctorate studies now to focus on Patient-Family Centered Care and including patients and families in my research and even as co-authors. I'm happy to join this conversation and look forward to more engagement.

Welcome to the discussion @jasonrn ! This has been a very powerful forum for those who have experienced critical illness either as a patient or as a loved one. Your unique experience as both a patient and now as a health care provider will offer a fantastic perspective. Glad you have joined.
In the years following your critical illness, what have been some of the biggest challenges you have faced?

@andreab The first year was the hardest. No one prepared you for what happens when you go home and what life is going to be like. I dealt with PICS, PTSD, anxiety/depression, opiod withdrawl, neuropathy, losing my hair, dealing with scars from injuries I sustained while a patient from the oxygen tubes, feeding tubes, chest tubes, and trach; nevermind the impact it had on my family. The first few days in the ICU my family was called to my bedside to say good-bye,...this happened on more than one occasion. It was hard for some to let me back in after that. How do you let someone back in when you've come to terms with the fact that they are gone? Of course then we had to deal with just getting back to some type of normal again, which nothing is really quite normal after that experience and environment. Bills needed to be paid and then I had to deal with insurance companies and disability which do not want to pay claims. Those hoops and hurdles were extremely draining and frustrating and required lawyers and social workers. I had lost 85 lbs being in the ICU then gained a lot back from all the medications. I had extensive nerve damage from being put on my belly in the ICU for up to 18 hours and being rotated back and forth which took a team of 25 people the first couple times. The nerve conduction therapy to try and identify which nerves were impacted was a nightmare that required needles and small shocks. In spite of these adversities I knew my life had some meaning and pulled strength from places I never knew I had. I found amazing "helpers" along the way. I had a hand-therapist who helped me gain use of my hands again, a psychologist who helped me with through my PTSD, and healthcare providers who listened. I always share some words of wisdom that Fred Rogers (from Mr. Rogers Neighborhood) mother shared with him..."Look for the helpers." No matter how bad things are, there are always helpers. This gives me hope, and I use it to try and impact my interactions with others. Thank you for allowing this platform for me to share my story. You are a great example of a helper! 🙂

Hey,
Day 41 in the hospital after respiratory arrest, seizures... 3 days on a ventilator in ICU, loss of mobility on left side. Now they don't know what to do with me (my pulse goes above 170 when I am on my feet). So I sit in a hospital bed in a tiny hospital that hasn't a clue what to do...

I have been in ICU too many times. At 17 when I broke my neck and had a TBI. Then when I had a full-blown stroke five years ago (lost everything but got the clot-buster and got most back). The times my blood sugar bottomed out (10, 25, 37...) and they couldn't stabilize it. And for three autumns in a row, respiratory arrest.

I hate hospitals. I have yet another PCC line. I feel like a GOMER - who stays in a hospital this long?? My PTSD is at an all-time high but there is NO emotional support... I got to the point where I ASKED.

The speech therapist did a camera study for the dysphagia. Yep, seems aspiration is an issue. She says I can get stronger. And I think... Yeah... And every year I still aspirate and end up not breathing, but just pretend that hasn't happened... Invalidation.

It gets crazy-making!

Nissi,

You post makes me think you may be having Autonomic Dysreflexia. The severe increase of you heart rate when standing is one of the signs. The broken neck in you teen years should always be a signal to the medical personnel to watch for your body to act very strangely. Sure, you medical personnel may tell you it only affects your blood pressure, but having dealt with a son with a C1-C2 injury I learned this buggeroo can also affect more than just your BP readings. I've given you a web article to read more about it.

Also http://www.unitedspinal.org is a big help with information and maybe you were not given them as a reference tool.
https://emedicine.medscape.com/article/322809-overview

Hi @nissi, welcome to Connect. I hope that connecting with this community online can offer some of the emotional support that is lacking for you at the moment. I know you are currently in the hospital. Are you out of ICU?
I'd like to bring @glinda into this discussion. She, too, has spent a long period in the hospital. Mind you, her situation is completely different from yours as she was recovering from a serious car accident. She is also no stranger to ICU as she is a heart transplant recipient.

Nissi, how are you managing the PTSD? What symptoms are you experiencing?

Hi @colleenyoung, sorry it's been awhile since I have been on connect yes I would love to join this discussion and yes you are right about me spending slot of time in the ICU it's every time I end up in the hospital that I go straight to the ICU.and yes I also understand on the PTSD I struggle with it daily if there is any advice I can give on about the PTSD it is to find a grounding

Thank you, @jasonrn, for quoting Mr. Rogers. "Look for the helpers" is a great quote and an important way to live our lives. All of us live in community and community is where we should seek and receive our support!
Thanks for reminding me of that.

Welcome back, @glinda. I'm so glad that you responded to my tag. I've been wondering how you are doing.
Can you explain a bit more about what you do to "find a grounding" when dealing with PTSD?