Just diagnosed with PICS...help!

Posted by beachgal @beachgal, Aug 16 11:27pm

I was recently diagnosed with PICS. I have been struggling for years after a long ICU stay where I was on a vent. I am seeing a therapists but getting frustrated with diaphragmatic breathing. I don’t see that it is helping me. The only thing that helps right now is having my dog with me. In my mind, though I know it’s not rational, I was held against my will in a facility that experimented on people and tortured me. My family stood by and couldn’t see what was happening to me. The doctors would look at me with an evil laugh when my family wasn’t looking. Would it help, since I have a science degree in veterinary technology, if I obtained my medical records from the hospital so I could get a clearer picture of what my hospital stay entailed?

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Hi @beachgal and welcome to Mayo Clinic Connect. You're not alone. I'd like to introduce you to @rosemarya @janegigi @rckj @alex12119 @jheitmann @howemb and others who understand. You can read more about fellow PICS members here:
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

I know Rosemary found it very cathartic and helpful to read her husband's notes and talk to him about what happened while she was in ICU. Getting your medical records will certainly help fill in some of gaps, at least clinically. Do you have a family member who can share their understanding of what went on? And perhaps even what they emotionally went through.

Beachgal, I have so many questions. Would you mind sharing why you were in ICU? What did it mean to you to finally have a diagnosis of PICS after struggling with symptoms for so long? Does this help in making steps forward?

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@beachgal I echo @colleenyoung when she welcomes you to this group and especially in sharing that you are not alone. If you have been able to spend any time on our group page here, you will find that your experience – although unique – is very similar in many ways to others who have shared their stories with the group. Many people have found it helpful to have a true sense of what happened to them during their ICU stay. It is not at all uncommon to not be able to remember an ICU stay or to have memories of things that aren't 100% accurate. Sometimes learning about your ICU stay is done through reading a journal or diary that may have been kept by a loved one or healthcare provider while you were in the ICU. Or other resources such as online postings that may have been done on your behalf can be very helpful in recapping events. If these options are not available to you, reviewing your ICU stay – ideally with a care team provider that was there with you – can also be very helpful. They can potentially help explain some of the memories that you have of your time in the ICU.
I hope this is even a little bit helpful. There is a wonderful community of people recovering from critical illness/injury on this page. I am so glad you found us!

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Hi beach.I had terrifying thoughts of all kinds of toture that left me wondering what was real and or imagined. Bad dreams or bad drugs? I think for me it was the combination of a sudden lack of control, large amounts of iv drugs,neglect by a charge nurse,and the illness itself of not breathing and recieving the intubation and ultimatly tracheostomy. I also found comfort in my animal friends. I have found no person locally who can treat me yet, find interesting information from Vanderbuilt University where they have a great Post I.C.U. support group. Here is some info I found both triggering and helpful.Please make sure you are o.k to hear about others experiences before watching the video. Nancy Andrews has wrote and even drew pictures regarding her stay and speaks so well. Hope it helps. Sorry no links allowed they say. O.K. well there is info on Vanderbuilt University websire.

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@trauma57

Hi beach.I had terrifying thoughts of all kinds of toture that left me wondering what was real and or imagined. Bad dreams or bad drugs? I think for me it was the combination of a sudden lack of control, large amounts of iv drugs,neglect by a charge nurse,and the illness itself of not breathing and recieving the intubation and ultimatly tracheostomy. I also found comfort in my animal friends. I have found no person locally who can treat me yet, find interesting information from Vanderbuilt University where they have a great Post I.C.U. support group. Here is some info I found both triggering and helpful.Please make sure you are o.k to hear about others experiences before watching the video. Nancy Andrews has wrote and even drew pictures regarding her stay and speaks so well. Hope it helps. Sorry no links allowed they say. O.K. well there is info on Vanderbuilt University websire.

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Hi @trauma57, welcome. I noticed that you wished to post a link to a YouTube video with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.

NOTE: As @trauma57 says, this video may be helpful, but it may also be triggering.

Trauma, can you share a bit more about yourself? What led to your being in ICU?

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Hi Colleen: I am new to all of this online group stuff.I was in the I.C.U. after coughing spasm/breathing difficulty following an allergic response to a new medication..In a minute my whole life changed,as many here. I am a woman in the midwest. Thanks for posting the video.I will someday tell my story like this.

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@trauma57

Hi Colleen: I am new to all of this online group stuff.I was in the I.C.U. after coughing spasm/breathing difficulty following an allergic response to a new medication..In a minute my whole life changed,as many here. I am a woman in the midwest. Thanks for posting the video.I will someday tell my story like this.

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Hello @trauma57,

What a remarkable video. Thanks for sharing this with everyone! How long ago were you in ICU? How are you doing today?

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@hopeful33250

Hello @trauma57,

What a remarkable video. Thanks for sharing this with everyone! How long ago were you in ICU? How are you doing today?

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Its been a few years. I am improving still.Thank you

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