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?

@seanne

Dear Colleen and Cindy,
I'm happy to do anything I can to help @cindyvag understand and cope with anxiety. So Cindy, here's for you.
First, please understand that I'm no expert on this. I'm just a fellow ICU survivor who, like you, was badly blindsided by critical illness and its aftermath.
Having previously never been seriously ill, I had no context for the anxiety, fear and other troubling emotions I felt afterward. And that lack of context was itself anxiety-producing. Would I recover? How much? Would the pain ever go away, and how long would that take? I'm sure you can relate.
Now, more than a year out, I've developed a couple of coping analogies. I live on the West Coast and have experienced several very serious earthquakes (including one that injured me slightly many decades ago when I was just 4 years old; I still remember the terror of it). With no warning, the earth suddenly shakes; the rumbling sound is overwhelming. You're thrown seriously off balance. You have no control. And you don't know if more quakes are coming that potentially could kill you.
People who live through multiple quakes come to understand that anxiety is a NORMAL psychological after-shock, a classic "fight or flight" response that nature has programmed into all of us as a survival mechanism.
We PICS survivors are like earthquake survivors — traumatized first physically, then psychologically. Unfortunately it's both normal and terribly unsettling as we worry through every "after-shock" — tiredness, fogginess, physical changes and most certainly anxiety. I think this anxiety is basically our nervous system's "fight or flight" reaction to the tremendous trauma we've been through.
But there's one significant difference between earthquakes and ICU after-shocks. In earthquakes everyone goes through the event together, thus they can relate and support each other.
But it's so different for us. Our traumas are individual, isolated, and afterward we can look OK although we're not…at least not in the first months afterward. That's why an online support group like this is so important. Do please keep checking back in and asking questions of the other "earthquake survivors" — the people who understand what you're going through when others don't.
My other mental image of anxiety is of driving through fog. You know how fog can seem thinner, then get thicker, then thinner again as you drive along? Anxiety is like that, too.
Right now your anxiety is "thick" because you're just out of the hospital, your body is weakened and you don't know what to expect. Going forward you'll probably have days when your anxiety is "thin" and you're inclined to think hooray! It's over!
But this may be followed by other days when you start out good then something triggers you (the sound of an aid car siren will do it for me) and your anxiety gets "thick" again.
And unfortunately some days it's thick from the start and stays thick. So psychological recovery can be baby steps, some forward, some backward, for quite a long time. But eventually "the fog" does lift.
My advice, if you want it (up to you): Be easy on yourself. Take it slow. You're reacting normally to an abnormal event.
Don't expect too much, even when others around you might be expecting you to be "healed by now." As a woman this means delegating to others chores that you'd normally do — and doing so with no guilt. None!
Realize that recovery isn't an event. It's a process.
One last thing. You mentioned that you've developed pimple-like sores on your body. I did, too. Turned out it was a drug reaction to a strong, new medication I needed to take post-ICU. My doctor switched me to a different med, and the problem was solved. But it took that switch to fix things.
I wish you all the best, Cindy. I'm sure there's a whole army of ICU survivors who'd link arms and give you a big, comforting hug if we could. So here's a "virtual hug." Can you feel it?

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

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Hi @seanne @heartbreaker @plexiclone @alex12119 @johnshaw @cindyvag @flagal22 @smoky and everyone in this discussion thread. It's been a few months since you posted here, so I wanted to get an update now that time has passed. How are you doing? Have some of the post-ICU symptoms started to fade or have their been some unexpected surprises? What challenges and triumphs of recovery would you like to share?

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It's been a year and 4 months since I was in ICU, and I still avoid any and all invasive procedures, including imaging. I just explain to doctors that I have developed an aversion to hospitals, providers, and procedures. Some times I feel so sorry for what my body went through that I weep. Amazingly, the hospital where I had the open heart surgery apparently has never heard of psychiatric reactions to medical trauma, and could not provide me with any support whatsoever — calls to psychologists were never returned, follow up with discharge planner was minimal, until I finally called the suicide hotline 2 months after the surgery. If you can do anything about getting providers to include PTSD from medical trauma or post- ICU depression in their care plans, do it. You can send them this posting. It took a concerted effort for providers to do something about post-partum depression, and now we must do the same for post-ICU depression.

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@heartbreaker

It's been a year and 4 months since I was in ICU, and I still avoid any and all invasive procedures, including imaging. I just explain to doctors that I have developed an aversion to hospitals, providers, and procedures. Some times I feel so sorry for what my body went through that I weep. Amazingly, the hospital where I had the open heart surgery apparently has never heard of psychiatric reactions to medical trauma, and could not provide me with any support whatsoever — calls to psychologists were never returned, follow up with discharge planner was minimal, until I finally called the suicide hotline 2 months after the surgery. If you can do anything about getting providers to include PTSD from medical trauma or post- ICU depression in their care plans, do it. You can send them this posting. It took a concerted effort for providers to do something about post-partum depression, and now we must do the same for post-ICU depression.

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Hello @heartbreaker,

I am sorry to hear that you have not been able to find help for the trauma you experienced. Some areas of medicine are certainly slow in catching up with the needs of individuals like yourself.

If you are still looking for a counselor/psychologist to assist you I would recommend that you contact NAMI, National Alliance on Mental Illness. Here is a link to their website, https://www.nami.org/

On their home page, there are crisis phone numbers listed as well as information regarding support groups. There may be others like you that you can connect with.

Will you post again and provide an update on how you are doing?

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Thank you for your concern. I finally found a counselor at another hospital who had the same surgery I did. He is very compassionate. I also tell every doctor I encounter what I went through, and let them deal with it. My friends who know me, and know that my husband was terminally ill at the time I was in ICU, still wonder how I survived the whole thing. My husband died 3 months later but I was able to be with him. Right now I am somewhat less depressed but still purposeless.

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@heartbreaker

Thank you for your concern. I finally found a counselor at another hospital who had the same surgery I did. He is very compassionate. I also tell every doctor I encounter what I went through, and let them deal with it. My friends who know me, and know that my husband was terminally ill at the time I was in ICU, still wonder how I survived the whole thing. My husband died 3 months later but I was able to be with him. Right now I am somewhat less depressed but still purposeless.

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Hello @heartbreaker,

It is so good to read your post and know that you did find a counselor to assist you.

You have certainly experienced a great deal of trauma with your own health issues and with your husband's death (all quite close in time). You undoubtedly need to give yourself time to recover from this loss and to begin to engage in life again.

What thoughts do you have right now regarding finding a new purpose in life?

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