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What did you find most surprising once you were out of the ICU?

Posted by @andreab, Mon, Nov 5 2:07pm

Being in the ICU as either a patient or a family member is a difficult experience for most people. However, transitioning out of the ICU can be challenging as well. When either you or a family member no longer required critical care and were transferred out of the ICU, what were some of the things that surprised you the most?

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I will go first in this conversation! This time I will be writing from a parent/patient perspective. Nearly one year ago we spent 3 days in the pediatric ICU with our son who had a near fatal asthma attack. The first 48 or so hours were very scary and he was very dependent on continuous IV medications as well as very high amounts of oxygen. Finally after everything kicked in and the inflammation got under control, we were transferred out of the ICU to the general care floor. As a critical care nurse practitioner, I transfer patients out of the ICU every day. But I had not experienced this from a parent/patient perspective. One thing that I noticed very much upon transfer was how calm and quiet the floor was. That was a welcome change from the lights and noises of the PICU. However, I can see how that transition can also be unsettling as you go from very intense 24/7 monitoring to much less just with a walk down the hall. I will also say that our transition home – although very welcome to all of us – was…strange. Suddenly there we were, right back into our home and lives as we had chaotically left it 4 days prior. Our next scheduled follow up appointment was over one month away. That left me feeling anxious. I desperately felt the need to debrief and recap the terrifying event we had just lived through with someone who would listen.

@annieb, I appreciate your starting this discussion and sharing your experience as a mother of a child who was in ICU as well as an ICU nurse practitioner. After your experience in PICU, do you feel you're able to help patients and families know what to expect with the transition out of ICU?

I'd also like to bring in others to this discussion, like @jasonrn @eileena @gloriajean @rckj @2011panc @seanne @marield65 and @rosemarya to share what they remember about transferring out of ICU to the hospital or home.

I felt that transitioning home from the ICU was like going on a long, anxiety-filled trip without a roadmap. Now, 10 months later, that's probably what surprised me the most. My medical center considers itself state of the art, yet it discharged me with absolutely no printed PICS information so I had no idea what to expect going forward. Surprise! I didn't just bounce back after 2 or 3 weeks, as I assumed I would. There's a lot of work to do afterward both physically and mentally, and my hospital apparently thinks their job ends at discharge. Wrong, in my opinion.
So people in our shoes need to be proactive researching PICS, and finding chat groups like this, if they're to arrive at a thorough understanding of what they're going through and what they may expect going forward.
Another big surprise: my full medical situation. I was discharged with a list of conditions that put me in the ICU on a ventilator (uncontrolled seizures, respiratory failure and aspiration pneumonia, plus more).
But as is common, I could remember nothing of the ICU experience. So being curious about what I'd gone through, I requested my full hospital records, which were free in electronic form.
There I found Surprise #2: my discharge papers were woefully incomplete. Only by reading my hospital records did I discover I'd also suffered sepsis and septic shock, plus a couple of other serious conditions (that one ICU doc predicted would kill me). Getting the full picture helped me celebrate my survival…gratitude is important to healthy healing.
It also helped me understand why I was so weak, forgetful, fearful, confused, exhausted and in pain. And that was still going on months later! So it can be useful to recovery to get hold of your records.
Surprise #3: the length of time it takes to recover and the pitfalls of not understanding that.
I would have done better if I'd had PTSD counseling fairly early on. I didn't because I figured that any day I'd be recovered and wouldn't need it. I did, but I needed a reality check to understand that — something I never got from my doctors.
Surprise #4: how clueless — and frankly unconcerned — doctors are about PICS. Post-discharge I saw 3 different specialists for different issues.
Doc #1 had never heard of PICS.
Doc #2 had heard of PICS and thought patients would be just fine if their ICU discharge doc simply explained PICS to them. My hospital memory was so impaired I can't remember any of the doctors who saw me. There's no way I could possibly remember what they told me.
Doc #3 was all into reassuring me. "You don't have PTSD," she gently told me after I described what I later learned were classic PTSD symptoms. So she was no help.
The bottom line: we really need to understand that we have to help ourselves. Most hospitals, mine included, don't have PICS clinics or support groups (and my entreaty that my hospital consider starting them has fallen on deaf ears). So it's up to us to self-educate and heal our psyches.
I found talking with family and close friends extremely valuable in processing what I went through. I also found writing a journal…something I'd never done before…very, very helpful. Just seeing my feelings on paper made me feel better. Not "cured" but clearer about my conditions and my recovery.

I so appreciate your post about your post-ICU experience, @seanne. You make a very strong point for advocating for yourself, getting your full medical records. From what I can see you have developed an accurate picture of your experiences even though you were too ill to realize what was happening to you. I so admire the work you put into this endeavor.

I am so pleased to hear that you journaled about your experiences. There is something very healing about writing about your thoughts and feelings – even if they are cloudy. I am glad that you have supportive family and friends to share with. I am especially happy that you found Mayo Connect and that you have shared your story and some valuable information about recovery for our other members who have been in the ICU.

I look forward to continuing to hear about your recovery process. Will you continue to post?

@hopeful33250

I so appreciate your post about your post-ICU experience, @seanne. You make a very strong point for advocating for yourself, getting your full medical records. From what I can see you have developed an accurate picture of your experiences even though you were too ill to realize what was happening to you. I so admire the work you put into this endeavor.

I am so pleased to hear that you journaled about your experiences. There is something very healing about writing about your thoughts and feelings – even if they are cloudy. I am glad that you have supportive family and friends to share with. I am especially happy that you found Mayo Connect and that you have shared your story and some valuable information about recovery for our other members who have been in the ICU.

I look forward to continuing to hear about your recovery process. Will you continue to post?

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Dear Teresa, Thank you for your kind and encouraging words. Every bit of support helps!
I neglected to add one more positive about journaling. It can take emotional weight off the family. Here's how:
Various family members stayed with me around the clock in the ICU. They experienced my frightening ups and downs — the crazy lab values, the coma that was slow to end, the respiratory failure, etc.
Plus they had to face the frightening reality that I might not survive, and if I did I might be seriously brain damaged.
Of course I knew none this. And once home I was full of questions about what I'd been through. It didn't dawn on me that asking about my hospitalization — and asking the same questions repeatedly because I couldn't remember their answers — continuously re-exposed them to their own ICU trauma. It was an awful thing to do to my loved ones.
Once I figured this out, I asked each person if I could ask them one final time about what I they saw me go through and what they themselves went through. It was pretty wrenching, yet all but one agreed. I wrote everything down in my new journal.
Since then I've made a concerted effort to not bring up our shared ordeal and only discuss it if they want to. Instead I'll reread my journal entries. As I learned more and more about PICS those entries became puzzle pieces I could put together to gain more understanding.
I also use my journal to write down thoughts, feelings, frustrations and observations I don't want to burden my family with. They went through so much for me. I owe them the kindness of letting them put my illness in their past.
As for me, the experience remains with me, in no small part because my docs say I could have a repeat of the core issues that hospitalized me initially.
Bottom line: Journaling is definitely helping me cope, both emotionally and cognitively. Hopefully writing this here will encourage others to journal, and they'll see benefits, too.

So, @seanne, you see journaling as being a support and relief for not only yourself, but also to those friends and family who walked down that ICU experience with you! How wonderful that you can be so considerate of the others in your life. That gives me a great picture of what kind of friend you must be.

My first major surgical experience was traumatic for me as well. It did not involve an ICU experience, but it did involve a 7 day hospital stay, with lots of tubes attached for several days, including an epidural pump. When I came home I also felt rather lost. I did a lot of journaling then as well. It calmed my anxiety about the entire experience of being so out of control for so many days when I couldn't eat, couldn't get out of bed without a lot of assistance. The resulting feeling of haziness from the absence of pain meds also caused anxiety.

Journaling is a great tool.

@colleenyoung

@annieb, I appreciate your starting this discussion and sharing your experience as a mother of a child who was in ICU as well as an ICU nurse practitioner. After your experience in PICU, do you feel you're able to help patients and families know what to expect with the transition out of ICU?

I'd also like to bring in others to this discussion, like @jasonrn @eileena @gloriajean @rckj @2011panc @seanne @marield65 and @rosemarya to share what they remember about transferring out of ICU to the hospital or home.

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@colleenyoung I definitely think our experience in the ICU helped me better understand the emotional exhaustion from the family perspective in a whole new light. When I went back to work, I felt like I could connect with my patient's loved ones on a different level. And it has really formed the way I counsel patients and family members about PICS.

@seanne I cannot thank you enough for sharing your experience with all of us. It is profoundly helpful to hear first hand from those who have experienced critical illness what we can do better to make sure that leaving the ICU or the hospital is not the end to our caregiving. Many of your statements stood out to me, but I was most impacted when you said, "Getting the full picture helped me celebrate my survival…gratitude is important to healthy healing." That is such a strong testament as to why we need to pursue ICU follow up clinics – where we can help the whole person heal mind, body, and spirit. Thank you!

What is this PICS ?

@walisky

What is this PICS ?

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@walisky
PICS stands for Post-Intensive Care Syndrome. Sometimes it’s called post ICU syndrome. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

You can read members talking about it in this discussion:
Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

And find more information about it on the Post-Intensive Care Syndrome (PICS) page (blog) https://connect.mayoclinic.org/page/pics/
See the series of blogs that @andreab wrote called "Breaking it down". In the series she discusses the multiple aspects of PICS.

Walisky, do you have an experience with ICU?

First I remember feeling like I could not breathe and wondering if that was what death felt like, then it felt like someone kicked me in the back. They told me I had tachycardia?? and they had to get my heart back in rhythm as I had lost too much blood. Then my hands were tied so I could not use them and there was a tube down my throat so I could not talk. I wanted them to get my husband and the nurse finally figured that out and explained it was not visiting time yet!! They started giving me blood and before visistation time they took the tube out of my throat. I had quadruple bypass surgery the day before and got out of surgery about 7 pm. that night. It was a horrible experience and I will never have surgery where you have to be put to sleep again beyond a mild sedative to relax me. The surgery was 16 years ago and my feelings have not changed. My left leg where they removed the saphenous vein still feels numb today. It feels like your mouth does when they give you novacane. I have not fallen and it has not caused me any problems except that strange feeling that I am now used to. There were many things I was not told and so my friends will say next time you will know what to ask and I think to myself, there will be no next time. This was the only surgery I have had in my 76 years and I was 60 at the time. I know I should get over it but I still have nightmares about my hands being tied and that thing in my throat. Most people I know have had multiple surgeries at my age and have no idea what I am talking about. Today I am doing good, no more surgeries and my heart doc and internist both tell me I am doing good so I just need to forget about the leg.

Hello @october2heart2002 and welcome to Connect.

I appreciate your sharing your story, as difficult as it was. I am so sorry to hear of your very frightening experience and the memories that have stayed with you for so many years. I am glad to hear that you are doing well, physically, since your bypass surgery, that is good news.

If you care to share more, have you had any treatments with a counselor to explore these memories and feelings that still seem so real?

@october2heart2002

First I remember feeling like I could not breathe and wondering if that was what death felt like, then it felt like someone kicked me in the back. They told me I had tachycardia?? and they had to get my heart back in rhythm as I had lost too much blood. Then my hands were tied so I could not use them and there was a tube down my throat so I could not talk. I wanted them to get my husband and the nurse finally figured that out and explained it was not visiting time yet!! They started giving me blood and before visistation time they took the tube out of my throat. I had quadruple bypass surgery the day before and got out of surgery about 7 pm. that night. It was a horrible experience and I will never have surgery where you have to be put to sleep again beyond a mild sedative to relax me. The surgery was 16 years ago and my feelings have not changed. My left leg where they removed the saphenous vein still feels numb today. It feels like your mouth does when they give you novacane. I have not fallen and it has not caused me any problems except that strange feeling that I am now used to. There were many things I was not told and so my friends will say next time you will know what to ask and I think to myself, there will be no next time. This was the only surgery I have had in my 76 years and I was 60 at the time. I know I should get over it but I still have nightmares about my hands being tied and that thing in my throat. Most people I know have had multiple surgeries at my age and have no idea what I am talking about. Today I am doing good, no more surgeries and my heart doc and internist both tell me I am doing good so I just need to forget about the leg.

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Hi @october2heart2002, I also want to add my welcome. "Just getting over it" is easier said than done. You're not alone in having long lasting effects, including nightmares from an ICU or surgical experience. Having your hands in restraints and not being able to talk because of a foreign object down you throat is extremely scary. Like @hopeful33250, I'd also like to know if you've ever talked to a therapist about the nightmares. Do they happen frequently?

@colleenyoung

Hi @october2heart2002, I also want to add my welcome. "Just getting over it" is easier said than done. You're not alone in having long lasting effects, including nightmares from an ICU or surgical experience. Having your hands in restraints and not being able to talk because of a foreign object down you throat is extremely scary. Like @hopeful33250, I'd also like to know if you've ever talked to a therapist about the nightmares. Do they happen frequently?

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I have never talked to a therapist as I have never met or visited with anyone who seemed to know what I was talking about. I have an anxiety disorder and have taken alprazolan for over 30 years. I take about 30 to 40 tablets of .25mg a year mostly for panic attacks which are much less now so I decided time just helped me get over it. Thing is I really like people but when I get that panicky feeling I have to get away from everyone and take a pill and if that doesn't work after about an hour I take 2. I understand others and have empathy for them to the point that I will start having the same pain they describe but others have difficulty understanding me and I think it is the way I expesss myself. I am basically a happy person and the frustrations I have I mostly keep to myself or share only with my husband and one special friend. Think I have just managed to settle into a patter that works for me at least for now. Thanks for anwering.

I'm glad I stumbled across this morning when reading my Mayo Clinic Connect newsletter which I have been receiving since subscribing? several years ago when my husband was diagnosed with Alzheimer's Disease with vascular dementia. That was a very stressful time, and the dementia support group helped me so much to understand what was going on and how I could process all of it. Now, I have just returned home after being in ICU five days and a day and a half on the surgical floor following emergency perforated peptic ulcer surgery. I also had Afib about 6 hours after surgery and a tube through my nose draining my stomach. The Afib righted itself about 12 hours later after meds kicked in. Didn't need any further treatment for that. I also experienced the feeling of being abandoned after being transferred to the surgical floor on the day before my release. It was so quite and I was used to someone checking on me almost hourly and now I saw no one. Since I was at the farthest room from the nurses' station, I didn't even hear any noises. I came home with a long list of meds and lots of instructions, but I have been so tired.
From other's messages, I will just have to realize it will take longer than I thought to get back to my busy self. I am 83 years old, but very active. Live in my own home, drive my car, involved in several organizations, editing a newsletter for three of them, and keep busy with church activities as well as visiting my husband, age 88, at the care center every other day. It is about a 45 minute drive to see him, so I have a couple friends who are giving me rides to see him for the next couple weeks. My daughter lives about 10 blocks away but isn't able to drive. She gets around by bicycle which isn't much of an option for me.

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