ICUsteps
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And the doctors treated me like I was crazy !!

I cant even explain how finding this site and reading all these posts by everyone who has experienced exactly what I am going through. I was in the hospital 3 weeks for 2 of those weeks I was ICU. I went to the emergency room a healthy person but I had a reaction to a medication given to me for a backache. 13 days later I wake up from ICU. I was told I ripped out my intubation tubes on day 6 and they had to replace the tubes. I left the hospital November 4 2017 nowith here it is almost 3 months later and I still have not been able to speak 1 word , I have the panic attacks that so many of you have described plus I was diagnosed with diabetes 2 and now I came to find this site because my hair is falling out by the hands full ! I have returned to the doctors so many times and they gave me an inhaler and to quit caffine. My heart was normal before this and my blood pressure always perfect. Now both run high and I was told to see a cardiovascular specialist. I have tears in my eyes while I write this because I thought I was alone. I have been slipping more to depression everyday giving in that my life would Never be the same and that nobody understands *** And now 1000s of you are here on this site who know exactly what I'm feeling have given me hope. For every post I find a new hero in my life.. But I'm angry- why have the doctors not warned me? Or how can I keep from feeling that something went wrong when I was unconcious? Why does this happen to so many people? I suppose I should slow down and ask first about my hair? The reason I ended up here.. ..and has anyone lost their voice? And where does the dizziness and body shakes come from? Is that part of symptoms from the ptsd? Has anyone else lost their voice? Thank you so much for all replies. Everyone here is hero to me!

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Dear KeylargoKim

I will attach links to two useful site. icusteps.org - do a series of downloadable pdfs.

ouh.nhs.uk/patient-guide/le...

icusteps.org/guide

I found my hair falling out, really disturbing. I believe it is common among ex ICU patients. The body in trauma decides that all resources should be mustered & used to run important services like heart, lungs etc etc. My nails stopped growing and appeared as if they would shed. My hair fell out because my body had stopped renewing hair follicles. Eventually, my hair stopped falling out and grew back. I don’t know about your voice, I Was intubated and then had a trachy - so I couldn’t talk at first. Eventually I started talk, quietly at first. As my respiratory system got stronger, so did my voice.

Recovery is slow but sure - CBT helps some with PTSD.

Best wishes for your future progress, yes it is true you are not alone.

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Thank you for links. I will definitely look at them. And thank you for your response. I honestly have cried like a baby since reading all these posts by everyone who has been so sick and still have such a positive attitude. Today is the first day I even want to move forward and have a slight bit of hope tomorrow will be a new beginning. Thank YOU

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I was in a coma for 2 months - which could have been forty years because I had no sense of the passage of time. I was unsure if my wife & children were still alive and I had no sense of why or where I was.

I learned to walk, eat, drink, sit and speak again. Critical care comes from such left field- from a sunny & mild day - bam - life will never be the same. In time you may see this as a more positive wake up call. Life is for living - many come out the other side unable to reassemble their lives. I am grateful to be alive and have great family & friends - keep plodding forward - I think they call it ‘trudging the road to happy destiny”.

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Your outlook on life is defiantly awesome. I suppose I am (was) one of those lost souls who couldn't figure out why was I being punished? But so many people have had true horror stories happen to them AND yet they are ready to keep trudging one day at a time as you. Truly a lesson for me to learn life is to short. Thank you for your inspiration.

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Morning! It's taken me a year to recover from a similar experience to you, so take heart you will improve. It's taken a lot of talking with family and friends, gentle exercise and setting myself little targets to try improve health, mobility issues little by little. Xx

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Hello KeylargoKim. I am the husband of my wife whom was in the hospital for micro plasma pneumonia. She was intubated for 2 weeks in that two week period they had to replace her tube 3 times. As a result she had lost her voice, we found out later by seeing a specialist that she her left vocal was permanently paralyzed, because of the tubes being replaced was the cause of her loosing her voice. A year later she started to get her voice back. Sucks that it takes so long but the voice does eventually comes back. Also the hair loss was a huge issue for my wife.. loosing her voice and her long hair was all it took for her to get really depressed. The hair loss later found out was because of the intubation for so long and x-rays every day for 2 weeks. It’s all because of the lack of protein. Your hair will come back. It’s not permanent. All this is temporary. Just understand it does take time. All the best too you...

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I was in 2 grade 3 Comas with Sepsis, pneumonia, Mrsa and kidney failure with only a 1-2% survival rate. 3-4 months later my hair started falling out. In total I lost maybe 30% of my hair. It’s now 6 months since I got sick. My hair is growing back, and although I have PTSD and short term memory loss, I am doing so much better than I thought possible. I wish you well on your continued recovery.

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Hi KeylargoKim, you mention dizziness. Among other things I've had issues with dizziness and balance since ICU and I'm nearly three years down the line now. My GP diagnosed vertigo and I'm receiving medication for it. I've never had good balance so maybe that's a factor. There are so many issues facing ex-ICU patients that good aftercare is vital and I don't know what is available to you in the US. I hope all goes well for you. It can be a long road so don't despair!

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Hi Kim, Have been misdiagnosed and mistreated here in Daytona, but thank God for the University of Florida in Gainesville. They recognized "cysts" as cancerous tumors and remove them from my liver. Unfortunately it left me with a large hernia which they thought was too dangerous to go back in and repair. Unfortunately I came down with uterine cancer, but after a hysterectomy that was all removed. I've been hospitalized numerous times for severe anemia and kidney failure. Now 2 years later the hernia strangled the intestine and burst. Daytona took one look at me and sent me by ambulance two UofF where they performed several surgeries to remove the whole body septice and repair the intestines and the hernia. Coma, ventilator, trach, Etc. What bothered me most about intensive care was my inability to judge time. Each minute seem to last hours. Unable to talk and ask questions drove me crazy. I kept thinking they were moving me to different rooms, different buildings, different places. Nightmares and hallucinations were horrible.

I am very fortunate I survived these two severe hospitalizations. My hair fell out after each surgery, but did come back. One time it came back very curly! I believe I lost some IQ points and definitely memory, and I think it was harder on my husband than me. It does get better with time. Be gentle with yourself. You're already a survivor.

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Shocked to say the least you are traumatised you poor thing why did drs not warn you about how u may feel I was just a family member of an icu patient and even I was offered therapyi turned it down as I was already in therapy you see like you I suffered/suffer panic attacks all the symptoms that come with it the pounding heart the feeling like something has changed and I'm ill but no body can find it I had health anxiety so I know what you feel minus the icu stay which I understand must be scary in accounted for you could be suffering post traumatic stress disorder but maybe go back to icu and tell them you few u have been failed how you fee and maybe they will point you in the right direction

I wish u all the best I hate the word icu although they are Anamazing lot my time in icu still hurts I lost my uncle in there and it seem a lot of icu patients all experience the same thing

Good luck x

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