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

Posted by Annie Johnson @andreab, Nov 5, 2018

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?

@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?

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@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.

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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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@rmftucker

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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@rmftucker I am glad that you found this thread! I think you will find the conversations very helpful in light of what you have recently been through. While reading your post, I wonder do you feel like some follow up contact with the ICU team would have been (or would be) any help to you in any way?

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No, I din't think I need any followup contact with ICU. They were so helpful while I was there. I told my kids it was like being at a spa without being able to eat anything. It was just helpful to be able to read others in this list and know that the "separation" I was feeling was normal, and would improve with time. I've been able to drive, with my daughter riding along, to visit my husband who is an a Care Center 45 minutes away. I didn't feel comfortable making that long trip alone at first, but I'm fine now and assuming my regular daily activities. Maybe a little slower but that will improve I'm sure.

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My lack of stamina in doing anything. Walking to the shower felt like I ran around the block.

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@rmftucker I wanted to check in to see how you're doing. I also wanted to let you know about Post Intensive Care Syndrome (PICS) page on Connect. Pages (https://connect.mayoclinic.org/pages/) are blogs written by Mayo Clinic experts. ICU nurse practitioner Annie @andreab has written and great series about about PICS called Breaking It Down (https://connect.mayoclinic.org/page/pics/). If you scroll through the newsfeed posts, you'll see articles describing prevention, recovery, the body and the mind. Perhaps these will be useful for you.

You must've been concerned not only for your own health, but I bet some of your first thoughts went to your husband and wondering how he might have reacted to your absence.

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@colleenyoung

@rmftucker I wanted to check in to see how you're doing. I also wanted to let you know about Post Intensive Care Syndrome (PICS) page on Connect. Pages (https://connect.mayoclinic.org/pages/) are blogs written by Mayo Clinic experts. ICU nurse practitioner Annie @andreab has written and great series about about PICS called Breaking It Down (https://connect.mayoclinic.org/page/pics/). If you scroll through the newsfeed posts, you'll see articles describing prevention, recovery, the body and the mind. Perhaps these will be useful for you.

You must've been concerned not only for your own health, but I bet some of your first thoughts went to your husband and wondering how he might have reacted to your absence.

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I am doing well and have had two follow-up appointments with my primary physician and the surgeon. All is well, and I am slowly getting back into my normal activities. It is just 3 weeks from my surgery and everyone tells me it will take time. I'm trying to be patient. I don't think my husband really understands how serious it all was, as his memory is in 10 minute times now, and he sleeps most of the time I am there. We had Thanksgiving dinner with him at the care center and they make it into a real celebration, so h enjoyed that and my family appreciates all they do. In the winter I just take one day at a time. If school is cancelled, I just stay home.

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I was aghast that I knew about PICS but the ICU staff and D/C planner did not. The hospital where I was in ICU could not provide resources to help me. About a month after open heart surgery, when I was no longer worried I'd survive, I began having painful flashbacks and reliving the painful and prolonged extubation, as well as the pain every procedure and tube caused. I had to call the suicide hot line to speak with someone about my mental anguish. That did help, but why didn't the ICU have this on their radar?

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Shortly after the birth of my 4th baby, I experienced a rare childbirth complication known as Amniotic Fluid Embolism. I was so fortunate to have been in a hospital that had enough blood for the rapid blood transfusion that was needed to save my life. I was given 75 units of blood during the surgery to stop the massive internal bleeding. I spent a week in a medically induced coma on a ventilator in the Shock Trauma ICU. During that same time, my baby was in the NICU. We are so grateful to the doctors and nurses that saved our lives!!!

Your post asks about what surprised us, and this is the surprise I have been dealing with as of late…It has been over ten months since my time in the ICU. I have returned to the patterns of my life, started working again, and am busy with my four children

But over the last month or so, I have experienced this overwhelming sadness that I did not expect. I have no history of depression and this inability to rally my mood has been so surprising and difficult. Has anyone else experienced overwhelming grief so long after a medical event? I truly thought I was over this and could move on with my life, and now I feel like I am a bigger mess than I was when I first got out of the hospital.

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Yes. I experienced it twice. First a few months after I had breast cancer surgery, and recently after I had open heart surgery. Get help from your care team right away. If they don't have any experience with PICS (post intensive care syndrome) then keep trying to you find someone who does.

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@amandacgrow

Shortly after the birth of my 4th baby, I experienced a rare childbirth complication known as Amniotic Fluid Embolism. I was so fortunate to have been in a hospital that had enough blood for the rapid blood transfusion that was needed to save my life. I was given 75 units of blood during the surgery to stop the massive internal bleeding. I spent a week in a medically induced coma on a ventilator in the Shock Trauma ICU. During that same time, my baby was in the NICU. We are so grateful to the doctors and nurses that saved our lives!!!

Your post asks about what surprised us, and this is the surprise I have been dealing with as of late…It has been over ten months since my time in the ICU. I have returned to the patterns of my life, started working again, and am busy with my four children

But over the last month or so, I have experienced this overwhelming sadness that I did not expect. I have no history of depression and this inability to rally my mood has been so surprising and difficult. Has anyone else experienced overwhelming grief so long after a medical event? I truly thought I was over this and could move on with my life, and now I feel like I am a bigger mess than I was when I first got out of the hospital.

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@amandacgrow I am so glad you found this forum and shared your story with us. What an incredible experience you went through. I am so happy for you and your family that you are all well and back running as a normal family does! But that word normal can seem strange, because if you are experiencing your recovery from this event like many others have, things may not seem quite "normal". You mention getting back to your "patterns of life" with kids and work, etc. Many people have talked about difficulties when getting back to those patterns – especially noticing it work. Some people tire more easily, can't concentrate as well, or physically cannot do what they once used to do. And this is actually very normal for many people who have experienced critical illness or injury. The feeling of sadness and grief is also something that I have heard many other share.
I'd like to pull @muriel66 into this conversation as she has shared very kind and wise words with others over the months on this forum, specifically dealing with emotions following critical illness. Thank you for joining this important conversation.

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