Anyone that can relate to PTSD ICU?

[snetterpie]

Hi 🙋🏻‍♀️, my name is Jane.

I had a full blown panic attack the other day after picking up a hospital pharmacy medication refill.

I heard the Mayo One helicopter 🚁 landing on the roof. Before I even saw it, I froze. I forced myself to exit the building and stared up watching as they finished landing and taking the patient out on a stretcher.

I started to shake, got sick to my stomach and couldn’t move.

That had been me, 2 years ago, in a coma, not remembering four days of my life. How did my body know what my conscience brain could not.

I awoke four days later in Rochester, MN ICU with multi organ failure, an Addison’s Crisis, double pneumonia, a cast from my fingertips to my armpit being held up by a rod, a concussion and I didn’t know where I was or what had happened. They had someone assigned to my room 24 hours a day as I was alone.

I had very vivid dreams about a man in my room, speaking with a foreign accent and he was denying me the help I needed to urinate. Of course, I had a catheter in and didn’t need to use the restroom. I was delirious. I thought no one would listen to me. I was alone in my brain fog.

After reading some of your stories and doing some research, I knew that I was only one of many that have been experiencing PTSD ICU.

Does anyone out there know where I’ve been? Or continues to be haunted by days that I don’t remember or puzzles that I can’t put back together. There are so many missing pieces.

[Aphil]

Hey, I'm Alisha and 6 months ago I was in ICU for 2 weeks. I was intubated for 8 days in an induced coma.

I can completely sympathise with you and understand how you feel. I am also a nurse and I work in some trauma wards. It's really hard some days as I see many people who started just with the same things I had. I had severe pneumonia with bronchi spasms and 1&2 respiratory failure. I am a healthy 28 year old woman, this came out of the blue. I have probably 10 days that I have no recollection of and I find myself trying to piece days together. I have some strange memories but I think those may have have dreams.

I see a trauma therapist and she has helped me alot.

I do advise speaking to someone. I live in Perth, Australia. We have a post ICU appointment where you can ask questions with the team who treated treated. Have you tried this?

Im sending love and positive vibes.

[snetterpie in reply to Aphil]

Unfortunately in the USA we don’t have that service. I’d love to get together with the team that saved me and have them help me through this.

Thanks so much for your story and ideas 💡

[Aphil in reply to snetterpie]

No worries. Maybe contact the hospital or manager of ICU as Im sure they would be able to arrange a follow up meeting for you. Its crucial for you to really have an understanding of what happened to you and have any questions you may have to be answered. This helped me to understand. Im also in the mist of requesting my notes - In AUS we can request our notes written by staff. I feel as a nurse myself, I'll be understanding and have a better idea of how I was each day.I hope that eases me a little but I really dont know.

Youre not alone xxxx

[snetterpie in reply to Aphil]

I, too, was in the medical field for 30 years before I got Addison’s Disease. You’d think that would be helpful, but in reality, I think it makes it worse. I know too much, yet too little about what happened.

Thanks so much!!

[Aphil in reply to snetterpie]

I totally agree. My follow up consultant, told me that he worries giving me a full explanation of how critical I was, would really affect me as I understand. But I think it helped at the time.

I hope you get somewhere. Feel free to message me at any time 😀

[snetterpie in reply to Aphil]

Thank you so much!

[Mijmijkey74 in reply to snetterpie]

I'm in the UK and feel the same as you. So much is missing. I just read your bio after l sent you that longer message in reply to your beautiful kind message to me. Do you have a lot of supportive people around you helping you come to terms with what happened to you? From fhat l could understand from your bio is that you were alone somewhere but can't recall where and something happened to you. Do you know who found you? Got you help or did you manage to get yourself help? I didn't have a clue initially how l came to be in hospital. Didn't know what hospital it was, convinced was in a hospital in either one or two different counties, did recall my massive asthma at home but no memory of how l got to be in a hospital as l thought out of county. Thought after a while it was my neighbour who heard me and phone me an ambulance. Was so convinced of that asked my dad to thank her for me. She obviously had no idea what my dad was talking about but was very shocked by the news. It wasn't until l was taken out of icu to a side room before going to a ward when my parents came with my handbag containing my phone, l could barely operate it or hold it as wrists were bent downwards and floppy and the phone weighed a ton to me then like l was trying to hold a big heavy house brick or two. Managed to look at phone records on my phone with help aed saw it was me who had called 999. That then caused a few memories to come flooding back, but their are big puzzle pieces missing. Did you check your landline or cell/mobile phone to see who you last called or who last called you before whrtever happened to you? Perhaps those people can shed some light for you. If you have phones. Or maybe whoever you last spoke with online or neighbours. It must be excruciatingly difficult and frustrating for you. 🤗

[snetterpie in reply to Mijmijkey74]

No, I don’t have any family support to help me at all. They didn’t come when they were called to say that I wasn’t going to make it even. I had no one with me while in the hospital for over two weeks.

My great friend, Paul, and I shared a common wall between our apartments and he and I shared my puppy Luci. He had a key to my apartment. He said that he came to check on me and I told him that I didn’t want to go to the hospital and was pretty belligerent about that. When he found me on the floor, blood and other evidence showed that I’d passed out in the bathroom. My head hit the tub, my right arm too. I had a concussion, my face was bruised and had raw skin on that side and a break of both bones in my arm.

He called the ambulance. But, I don’t remember that time leading up to this, anything about the fall, being sick, the ambulance or the helicopter and woke up delirious. I only have fragments of the weeks in ICU and weeks after.

I don’t remember getting sick or him finding me on the floor, the ambulance to the first hospital, the helicopter to Rochester or being in a coma for three days. The weeks following my discharge are very fragmented too.

I have a very rare disease called Addison’s. I was also born with asthma. So, I get super sick, super quick with what’s called an Addison’s Crisis and double pneumonia. I’ve been hospitalized for this too many times to count after my diagnosis 10 years ago, but had known I was sick and told Paul or he called 911, 999 elsewhere.

He gave me a few pieces from the beginning, but was alone after that and have no one to help with pieces of the puzzle.

Also, I had delusions also for days after coming out of the coma. I had a psychiatrist consult because of that and she just said that wasn’t real.

I was released with nothing to help me cope with any of this and I was in the best place in the world for my care.

I hope that I’ve been able to answer some of your questions. I do feel better reading everyone’s stories because I don’t feel so alone and crazy.

Write me any time.

Smiles, Jane

[FamilyHistorian]

Hi

I am in the Uk. Just over 13 months I came out of hospital following a heart op, pneumonia and sepsis I was also ventilated / sedated for about 2 months. I had delirium and very graphic hallucinations which actually were my reality. I also suffered PTSD.

My hallucinations don’t bother me now although I can remember them in graphic detail. When I first came home if I dropped off in my arm chair I wouldn’t be able to wake up because I was still attached (NOT) to the support machines until they disappeared.

I have had a course of CBT which has helped tremendously. I have come to terms with the loss of memory from before ICU (about 3 months).

ICUSTEPS provide a lot of info and ICUStepsChester runs drop ins via zoom during the weekend but in the evening uk time. They also provide other support which I have found invaluable.

[snetterpie in reply to FamilyHistorian]

Thank you so much for sharing your story. I don’t feel so alone any more.

[Sepsur]

Hi @snetterpie & welcome

The things I know & don’t know about ICU fall into about the same size piles. I have been told about many things that went on whilst I was in a coma, over time, I’ve either remembered it incorrectly or ‘they’ have slightly changed their recollection.

I’m not especially troubled by what I don’t recall, I’m also fortunate that I didn’t suffer particularly PTSD although many people do, it was about the only legacy of ICU I didn’t get.

Many of the sedatives & paralysing agents that they use to put us in a coma have 2 different effects.

1 they cause retrogressive amnesia - so you won’t be able to remember periods of time from the past - even before whatever brought you to ICU.

2. Anterograde amnesia - you may struggle to learn new things & skills in the future.

[snetterpie in reply to Sepsur]

Thank you. I’ve even forgotten several days at home before I was flown by helicopter. My family was told that this was just protocol and I’d never survive the flight.

I’m glad you’re able to deal with all you’ve been through without PTSD.

[Sepsur in reply to snetterpie]

My wife has always said I must be on the spectrum because I was so unfazed by ICU - listen there were plenty of awful procedures in there - but I can quite quickly adapt to new circumstances. Other people have different coping mechanisms, I’ve spoken to soldiers who’ve done tours of war zones with no issues but have suffered terrible PTSD after a coma & ICU.

What I do know, is that PTSD rarely goes away of its own accord. The brain has stored these memories in the wrong part of the brain - an area that doesn’t go through the same processing to correct itself. The memory remains raw.

Family members who have suffered PTSD have been greatly helped by CBT & EDMR.

[snetterpie in reply to Sepsur]

I’ve done CBT work and also CEN, which is a newer therapy that I’ve found useful. I definitely need to get some in-person counseling, though, but we have an almost year wait here in the US to get an appointment.

Thanks for your information!

[Sepsur in reply to snetterpie]

The waiting lists are horrendous here too

[snetterpie in reply to Sepsur]

It’s so sad that the people that need the most immediate help can’t get it. I hope that changes.

[Sepsur in reply to snetterpie]

I doubt it - unless there is such a radical shake up of priorities within society.

Hospitals discharge you as walking wounded - on the one hand, they aren’t geared up for the real time that it takes to rehabilitate ( financially or the level of staff required & manpower hours) & on the other, they want you out of the ‘red’ zone ASAP. How many 2ndary infections did you pick up? Hospitals are full of germs & illness - better to get us home. How much quicker did you rehab once home ( having to do things for yourself).

[snetterpie in reply to Sepsur]

I agree completely. I’ve been treated for MRSA and C-diff from hospitalizations so many times.

I’m also unfortunately left on disability because of another incurable disease (just what I needed) and now insurance and options for care have hit rock bottom.

I’ve been what they call a “bounce back” here in the States from being discharged too early, not finishing my course of IV antibiotics and Internest’s that want your bed.

I worked in the Medical field for 30 years before getting ill and it hasn’t gotten better in that time period either.

[dottyraffe]

Hi my story is very similar to you all. I was admitted to hospital with double pneumonia and was moved to HDU. I woke up after...in my mind...4 days. I had actually been moved to ICU and placed in an induced coma for 2 1/2 months. I experienced horrendous hallucinations and delirium and suffer with PTSD to this day. I believe I was one of the lucky ones as I was referred to a Traumatic Stress Service in London. The support and understanding was amazing and is probably the reason I am able to write this today. Stay strong everyone and know you are not alone.

[snetterpie in reply to dottyraffe]

I’m in the USA and wasn’t given any options upon discharge. I’ve lost many days before I got sick, during my coma and even a month following discharge. I wish that someone could have arranged help back then.

Thank you for sharing your story. I don’t feel so alone now.

[Misterpaulwood]

Doing a time line from you first being admitted to end of icu stay realy helped me put the ducks in a row as it were, I'm Luky to be having weekly specialist icu PTSD therapy and it's the first thing we did.Hope this helps

Paul at the Steampacket Inn Knottingley