How do I cope with a near death experience?
July 2, 2017 7:44 PM   Subscribe

You guys might remember my question from late last year mentioning the "worst asthma attack I can remember." So, it turned out I had improperly treated pneumonia, which turned into ARDS, sepsis, heart failure, and 79 days in the hospital (34 unconscious in the ICU.) I'm having some trouble processing this whole thing, and am hoping you guys have some useful input.

I think it's safe to say you all will understand when I start by saying that it has all been deeply traumatizing and also really weird. I'm looking for coping strategies more specific and creative than "go to therapy."

I walked into the ER on November 5th (having severe trouble breathing and actually walking was probably a really stupid decision) and when I finally started reconnecting to reality around December 9th, I found myself unable to move, breathing on a ventilator via a trach, being fed through a tube inserted into my belly, etc. They used just about every medication you hear about on the news (morphine, fentanyl, propofol, etc.) to keep me sedated and paralyzed while I was stuck in this contraption to keep my lungs moving - this means I have lost all my memories of everything from that first afternoon through the day they moved me out of the ICU, except for the delusions and hallucinations I experienced. My father waited until I was able to stay awake and nod my head to tell me that Trump had been elected (for a while I thought that I might have just been really confused; I was also pretty certain that Sanders had been the Democratic candidate.)

In addition to missing an entire month which I admittedly would have found incredibly stressful had I been conscious, I also woke up to a bizarre world in which my mom and dad were willing to spend several minutes in one room at the same time (I don't remember them speaking to each other in person ever before this; they always communicated via my stepparents.) Apparently they were told by the doctors that I had less than a 50% chance of survival, that I might not make it through the tracheostomy, and that once I survived that I'd be spending the next three years in inpatient rehab, minimum. They had me on seven different antibiotics for the pneumonia, and warn that some of them might not work well for me in the future. The doctors also said I might never walk or talk again, and that the delirium was likely to be profound and I'd be noticeably confused for at least a year. They say they're amazed I didn't need dialysis (apparently only having two organs fail is abnormal.) So my mom and dad weren't exactly emotionally stable when I started noticing stuff; neither of them is particularly over any of this. My sisters were so upset over seeing me all puffed up and connected to a million machines that they didn't visit again until Christmas. And my stepdad died a week before I was admitted, and my mom got fired at New Year's (by the new elected official in her office.) So I'm not even vaguely living in a stable emotional environment.

I've also got a lot of (possibly permanent) consequences to endure, like having to take heart medications for the rest of my life, needing to use a walker and a leg brace, getting physical therapy even now because of muscle weakness and balance problems, being on some fairly serious meds to handle the nerve pain related to compression in the Rotoprone bed, and there are huge indentations in my face and knee because of stage III pressure ulcers that didn't heal until May. There's something of a debate as to whether the flashbacks (primarily related to the delusions/nightmares) will ever go away. If I hadn't been able to move into my mom's house, I would have been put in residential care; I'm not considered safe to live on my own because of the fall risk. I am essentially "uninsurable" now.

Oh, and all of this was caused by a totally preventable medical error - all those times I showed up in the ER in September/October, no one did a swab to determine whether it was bronchitis or pneumonia. This cheap test would have saved something like $1,000,000 in medical costs (so far.) I'm reasonably confident they didn't test me because I'm female and had a diagnosed anxiety disorder on my medical record; laziness probably came into the picture too. Literally within minutes of me walking into a different ER there was a total freakout over the exact same things that had led to the first ER giving me steroids and sending me home; per the nurses in the ICU if I hadn't been in my mom's town for my stepdad's funeral and thus at a different hospital, I probably would have died within a day or two. My lungs were 100% full of fluid.

Things I have done so far: writing basically factual accounts like the above over and over again, contacting attorneys to see if I have a viable lawsuit (basically no, because they want amputations or wrongful death,) going to individual talk therapy, and joining online support groups. I'm just not sure what else to do, and the people in the support groups are kind of dealing with it all aimlessly/ineffectively themselves. Doctors and therapists seem to be sort of confused about the things I'm experiencing, I think because they aren't used to people who got that sick actually surviving. Also usually people really do end up in nursing homes; the average person who goes through what I did is over 65 and already really sick. When we visited the ICU after I was discharged from inpatient rehab, they treated me like I was Lazarus. My various doctors and nurses used the word "miracle" nearly every day, and my pulmonologist was fond of telling me I was the sickest person in this hospital - a hospital my mom refers to as "where people go to die" because they are always taking in serious gunshot wounds and car crash victims. My trach surgery was delayed by half a day because people kept coming in with major emergencies (this one in particular, from what I understand.)

I've thought about writing a book (like, something to put up on Amazon) to explain all the stuff I learned from being in the hospital for such a long time - I did not know that my hair would fall out from the shock of my illness/treatment, or that they would make me go two months without a shower, or that skipping six weeks of tooth brushing makes it so that brushing your teeth is complete agony. I didn't know that not being able to change what you look at for a month (I was confined to a bed and couldn't move without assistance so I saw nothing but the TV and the door) can drive you nuts, or that you might get stuck on dangerous medications without anyone checking with you first (they had me on Seroquel and attempted to start me on Breo because they thought my asthma was seriously uncontrolled.) No one warned any of us that I might become convinced there was a huge conspiracy on the part of the medical staff (my specific delusions had to do with a nonsensical plan to deny me a shower.) And the only reason they asked my parents about treatment decisions is because I happened to have authorized one insurance company to share information with my father if they couldn't reach me; my hyphenated name also helped to prove they actually were my parents. A guidebook would have been useful for all of us.

But I'm not sure what other strategies might help. I'm not so good at coming up with new ideas right now; I keep forgetting what I've said or decided or taken care of, and it's still really hard to pay enough sustained attention to get through an hour-long drama on TV. It's taken me weeks to write this post!

So: any suggestions?

If you read this and feel like I might be a visitor from a soap opera or that I must be exaggerating, know that you are not alone. None of the medical professionals I've met since this have willing to believe it until they see my official record, at which point they start saying "wow" a lot. Luckily I've stayed in the same system that the hospital is in, so this process only lasts a few minutes each time.
posted by SMPA to Health & Fitness (18 answers total) 23 users marked this as a favorite
First of all, wow. I am really sorry you went through - and are still going through - such a difficult time. I don't know that it will be much consolation, but it seems like the medical profession is just starting to wrap its collective head round the fact that recovery from a severe illness, especially a prolonged one, is rather more complicated than doing physical therapy exercises and eating well. That depression and other psychological changes can take time to kick in after the initial "recovery" (by which they seem to mean, no longer in ICU). There are some organisations actually doing research into recovery from critical illness. I don't know if advocacy appeals to you - though it sounds like it might, from your idea about writing a book - but that could be something to pursue. You have first-hand experience that could really help illuminate this aspect of patient care. I don't know if there are any universities or schools of medicine near you, but if there are, maybe you could approach them to see if they would be interested in having their students learn from your horrible experience.

On the other hand, that might all be a lot of work. It might be easier to write a book first. Not kidding! I would read the hell out of it.

You might also find that making art is therapeutic, or at least partly cathartic. Whether it is art that relates to your experience or art that helps you forget about it, accessing those parts of your brain could help to unlock other creative solutions that work for you. Also art can help with expressing things that are difficult to put into words, which can also help a lot - maybe not so much for communicating to others, but for your own understanding and psychological healing. Music can apparently work in a similar way, so if you are at all musical - even singing - that could be something else to explore. (If journal articles are helpful, here's one.)
posted by Athanassiel at 9:05 PM on July 2, 2017 [4 favorites]

As cliché as it sounds, you need to give yourself more time to process. You survived, but things have changed for you physically and mentally and emotionally. Everything is out of sync, so of coarse you feel unmoored. Memory and concentration issues, flashbacks, and mood swings are all normal in recovering from traumatic events like this... even for your family, even though they didn't experience the physical part.
posted by zennie at 9:18 PM on July 2, 2017 [5 favorites]

First off, I want to say that you are right that the medical system is not prepared to deal with what happened to do on am emotional level in general. It sucks. I'm sorry. However, There are some great compassionate people in the medical system and they can be found and be really supportive, so if you find that social worker or PT person hold on to them or marry them ah la The Diving Bell and The Butterfly.

I'm a LCSW. I'm not your LCSW.

I'd suggest a therapist with experience in complex trauma with ability to do EMDR which may reduce some of your symptoms. It may be helpful to actually process some of the delusions as part of your trauma because your mental reality in ICU was yours.

I'd also suggest spending time finding a new hobby, be it gardening or knitting, stamp collecting.

Nature and meditation is just helpful in general in my opinion.

I love the idea if writing a book. This does happen and people do not know how to respond.

Take gentle care of you. Keep fighting for the care and respect you deserve every day.
posted by AlexiaSky at 9:27 PM on July 2, 2017 [11 favorites]

Someone close to me is still on an emotional journey of recovery from his near-death experience, hospitalization, and subsequent chronic illness, and it wasn't even as bad as yours (sorry, you're probably hearing that a lot). A couple years later, I feel like he's only just starting to process some aspects of it, such as feeling like the world is against him and just all of the anger that comes from having had his life overturned. All of the things he's going through and you're going through are understandable and terrible.

My first suggestion would be that if your therapist isn't specifically trained to deal with PTSD, you see someone else—either in addition to or instead of them—who focuses on that. What you went through and are still going through is wholly traumatic, and you need to talk to someone who knows about and can take you through the best-practice treatment options for that.

Also, even if you can't sue the hospitals or health systems involved for what happened, I wonder if it would be useful to speak to a hospital ombudsman at each location—with an attorney present if that would make you feel more comfortable—to explain to each what they got wrong in your case and make them aware of that. If they administered medications you never would have consented to take, without consulting your family, that's really not ideal (to say the least). And in the case of the first hospital, their lazy approach to investigating your condition led to your illness going untreated to the point that it became life-threatening and necessitated all the additional treatment. Not that you don't know that, but they may not, and those are the things that stick out to me. It might help you get some closure on this—which is important!—to make a list of issues at each place and let them know. At very least, you may help prevent similar outcomes for others.

Also, it seems like a social worker or head nurse should have gotten involved at some point at the second hospital to make sure that all the dots were being connected and that you weren't suffering through a situation where you had no assistance for oral hygiene or to change your position in bed, to the point that you developed serious pressure ulcers, were forced to keep seeing the same view all the time, and it sounds like developed gum issues. Whether they didn't do this because they thought you were going to die or because you were younger than average or whatever doesn't matter—they should have had someone looking out for those things. Re: your gums, I know you've probably got more than enough doctor's appointments on your schedule, but you should probably see a dentist or periodontist, if only to document the outcome, plus hopefully head off any major issues that might have resulted.

As others have noted, I'm not sure any national body is yet tracking the mental-health outcomes from situations like yours, but I believe they do track stats on pressure ulcers and possibly other health outcomes. You should make sure they're aware that they didn't meet the standard of care that all hospitals strive to meet in those specific situations, while of course acknowledging the work they did do to correctly diagnose and treat your condition. Obviously you can be appreciative of your life having been saved but be unhappy about aspects of the outcome that could have been better if better procedures had been followed.

Anyway, good luck with your journey from here. This is not a situation a lot of people have been through or understand, and that makes what you have to go through even harder.
posted by limeonaire at 9:46 PM on July 2, 2017 [10 favorites]

Post-ICU PTSD is absolutely a recognized phenomenon. I wonder if you might benefit from finding a therapist who focuses on PTSD treatment.
posted by praemunire at 10:19 PM on July 2, 2017 [15 favorites]

I am really, really happy you're still with us and I'm sending you my best wishes while you continue to heal.

Definitely look into PTSD treatment. I also think that putting the book together is a fantastic idea.
I'm wondering if gentle dance (like very simple and meditative modern dance or ballet) could be calming and enjoyable. I also like adult coloring books for keeping my hands busy while I'm thinking things over. Those suggestions seem kind of trite in light of all that you've been through, but I think it can be helpful to experience simple pleasures like these while you re-orient yourself. I think routines could also be really helpful here -- picking small things you enjoy and doing them daily, weekly, etc.

Seek out art, gentle music. Watch videos of people meditatively performing traditional crafts on YouTube. Enjoy your senses.
posted by delight at 11:12 PM on July 2, 2017

Just remembered that you are having some mobility and balance challenges, so I modify my dance suggestion to seated/reclined simple yoga poses and any other fluid, graceful movement that you are comfortable doing and that feels good to you.
posted by delight at 11:25 PM on July 2, 2017 [1 favorite]

I had something similar (but, like everyone else, less bad) happen to me. The knock on effect that it took me longest to notice was how much it infantilised me in the view of my loved ones. So on top of the trauma, I got effectively no support in picking up the pieces of my adult life. Definitely find what strength you can to explicitly address this issue when it's possible.
posted by ambrosen at 1:18 AM on July 3, 2017 [2 favorites]

Oh my goodness. I am so sorry you had to go through that! It sounds like absolute hell and nothing anyone should ever have to experience.

I have been through some pretty traumatizing health stuff the last few years (nothing close to your experience though) and here is what helped me:

-Hearing someone tell me that what happened was not fair and was really awful and I had every right to be angry. So let me say this to you now: What happened to you was not fair, was really awful, and you have every right to be angry.
-Going to counselling. It took a couple of tries, but I found a counsellor I clicked with. She was one of the people who told me the above (about it being unfair etc.). You will probably want to find someone specializing in PTSD.
-Talking to others who had had similar experiences--I was lucky to find an excellent online support group. I had lots of nice supportive people in my life, but I found only people who had actually gone through these experiences really GOT it.
-Reading lots of stuff on grief. You might find it helpful to read stuff on PTSD.
-Writing out what had happened over and over and over. Sounds like you're already doing this, which is good. I love your idea about writing a book, because it's a way to control your narrative and use it for good, after being put through a profoundly disempowering experience because of someone else's stupid mistake.

This is trauma, and it takes time to process. I know it probably seems like it's been a long time, but honestly it takes years to process this stuff, especially if it has life altering consequences. It has been three years for me, with subsequent retraumatization, and I am not the person I was before and never will be. But I do feel better than I did, and time does help.

I will be thinking of you. You are obviously a strong person, and I'm really glad you are still with us.
posted by hurdy gurdy girl at 2:01 AM on July 3, 2017 [2 favorites]

I've been an ICU nurse for many years. I'm very sorry for what you went through. It is horrific. Thank you for sharing your story.
I found Peter Levines work on trauma helpful and hope you will also.
The other thing I suggest is that you create a grief ritual for those things that you have lost (even the temporary losses). Rituals help us process, reaffirm our right to grieve and provide space for what is next.
posted by SyraCarol at 6:17 AM on July 3, 2017 [6 favorites]

I would LOVE to read such a book, FWIW. And it might be a legit coping strategy for you -- by sharing what it was like for you, you might help someone else to feel less alone one day, and help their family to better understand what they're going through. So maybe you'd be extracting some sort of meaning or purpose from going through this horrible, unfair thing by using it to help someone else.

And fiction writers everywhere would love to learn and use the kinds of visceral details you're sharing as the most amazing research to have access to, seriously, wow.
posted by Andrhia at 6:44 AM on July 3, 2017

The therapy Peter Levine created for dealing with trauma is called somatic experiencing. My therapist specializes in this, and I can't say enough about how helpful it's been. My fibromyalgia symptoms disappeared with this therapy. You can look for a practitioner here.

Like many other people, I had a similar but not as bad experience of coming close to death because of a misdiagnosis. I was sure the doctors at a very highly ranked hospital were wrong. I saved my own life because I didn't trust them and sought another opinion. (I believe I was "profiled" as having heart disease because of my weight - I actually had life-threatening anemia caused by cancer.) It is important that patients know that this can happen, so I hope you will speak out. And I'm so glad you survived this.
posted by FencingGal at 6:44 AM on July 3, 2017 [2 favorites]

As someone who has been in and out of the hospital numerous times in the last five years due to sepsis and complications, I can somewhat identify, but wow ... the places you've been. Thanks so much for sharing your story.

Speaking of which, I nth the recommendation for writing a book for both the therapeutic value to you and the horizon broadening it would give to readers.

We're all giving you some good energy -- you need and deserve it.
posted by DrAstroZoom at 7:31 AM on July 3, 2017

I'm so sorry this happened to you. Your story makes me so angry. Of course because of your psychiatric diagnosis no one did the swab test. Typical. I was in the hospital for ten days with pneumonia (which is nothing compared to your experience, I know). My doc's PA fell down on the job and missed a lot of signs -- then they were closed the day after Thanksgiving; basically a series of events like dominoes tipping over. I can confirm that there is absolutely ICU-induced psychosis. And also, that stress makes your hair fall out, and that it takes time to feel normal again. I have no good advice but I'm sending you all my good wishes. Please MeMail me if you need someone to talk to.
posted by intrepid_simpleton at 7:45 AM on July 3, 2017 [2 favorites]

I also came to say that you should get a therapist who is a PTSD expert. What you have been through is a severe trauma, and you need someone really top-notch to help with that. I would suggest that you ask around until you can get a referral to a therapist who isn't just familiar with PTSD, but has really solid PTSD experience and is up on the current research - even better, doing the current research.

Are you doing occupational therapy? If not, I'd encourage you to find a good occupational/rehabilitation therapist. A good OT is basically doing applied neuroscience, and they have amazing tricks for calming your nervous system (in addition to helping you with physical rehab things).

I also wanted to commiserate that I've had disturbing conspiracy-related delusions and hallucinations when in the hospital with pneumonia. That is definitely a thing! I think of it now as my brain doing the best it could to try to come up with an explanation for a situation that made zero sense. Good effort, brain, but the story you came up with was super fucking creepy. So, maybe you and intrepid_simpleton and I can have a hospital psychosis club?
posted by medusa at 8:30 AM on July 3, 2017

I, too, would read the heck out of such a book. Many years ago I had a traumatic experience in a hospital and my best friends suggested I write a book about it. I seriously considered it. Never did it, but thinking it over and thinking about my experience in terms of "how would I write this down as a book" was on my mind a lot for a long time after. I might still do it some day...

You could also write an essay and put it on Medium.

Maybe in addition to the excellent books on grief that people have suggested, reading about provision-of-healthcare issues and healthcare disparities could be helpful. I studied that in undergrad and eventually in grad school (so in a way, I wrote some papers about it, eventually). That knowledge helped me a LOT to understand what I had experienced.

Longform reads are a good starting off point. Miraculous survivals, health care, medicine, dying, mental health, ptsd. (If you try that and it doesn't work out though, please feel free not to continue. That stuff sits on a fine line between helpful and anxiety-inducing; if it's not helpful for the headspace you're in right now, that's totally valid.)

I wish you the best. In the words of Hans Solo, "Never tell me the odds!" I don't know you, but I'm glad you're still here with us :)
posted by halonine at 9:49 AM on July 3, 2017 [2 favorites]

I'm so sorry. I almost died from pneumonia and sepsis about 2 and a half years ago (same odds). I had PTSD before this medical event and it was triggered in a huge way by my ICU experience (which was shorter than yours - I only have about a week that I can't remember).

Nthing that you should talk to someone who specializes in trauma/PTSD, and one technique that helped me deal with some of the disturbing memories (especially around the first anniversary of my hospitalization) was the Rewind Technique.

You also might want to check out the organization Sepsis Alliance and their info on Post-Sepsis Syndrome. Sepsis messes you up for a long time after you've had it, but it can get better. The first year after I was sick I thought I would never be the same physically or cognitively. I'm still not the same physically (I had a complicated medical situation before the pneumonia), but it has been a pleasant surprise to find things slowly improved cognitively.

I did do some writing about what happened afterward and it helped, and I also did some art journaling (very simple sketches and a few words on the page; no complicated collages or anything). I devised a lot of coping strategies involving writing things down, re-reading over and over, and reminders on my phone to deal with the cognitive issues (some more successfully than others - I was laid off last year and this situation certainly played a part in my department looking for a way to get rid of me, though I couldn't prove that). My hair eventually stopped falling out and started to grow back, and that helped enormously in just feeling "normal" again.

My memory is still screwed up or I might be able to come up with more specifics, but I'll keep trying. Feel free to memail me if you want to talk. I'm really glad you beat those odds.
posted by camyram at 1:24 PM on July 3, 2017

Look at this one way, and you've been spectacularly unlucky. But look at it another way, and you're spectacularly lucky. You're alive. The doctors say it's a miracle. Try to focus on how lucky you've been, on everything that had to go right for you to be here now.

I don't say all this lightly. I'm a cancer survivor with a 1 in a billion genetic syndrome that's really fucked my life. I know what it is to feel cursed, to live in a body that barely feels human anymore. But we can despair, or we can try to focus on how lucky we've been. People helped us, science came through for us, and we've survived.

That book is a great idea. Maybe think about a Youtube channel, or a podcast. You've got stories to tell.

Also, maybe watch some Lil Bub videos. I've been thinking about suggesting to Bub's owner that he should market some shirts that say STRONG LIKE BUB.
posted by Ursula Hitler at 9:07 PM on July 3, 2017 [2 favorites]

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