← Return to Post-Intensive Care Syndrome (PICS) - Let's talk

Discussion

Post-Intensive Care Syndrome (PICS) - Let's talk

Intensive Care (ICU) | Last Active: May 22 3:02pm | Replies (598)

Comment receiving replies
@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

Jump to this post


Replies to "I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my..."

@rckj I am so glad that you found this conversation. Opening up and talking about your experience and ongoing challenges can be so powerful and helpful to recovery. There have been many members of this conversation who have shared that with us. A couple of our most recent comments seem to be very much in line with what you are describing. @jean63 and @rsinger22 - you both shared similar sentiments as @rckj. Do either of you have more insight/words of encouragement or want to share your experience with this?

@rckj, I would like to extend my hand in a virtual handshake to welcome you to Mayo Clinic Connect. I am happy that you have posted in this discussion. If you have read through any of the other responses, I think that you will realize that you are not alone.
I am sorry to hear of the complicated path you have endured. I understand your fear/concern about possible life-threatening complications and I am thrilled for you that you are on a very positive non-hospital path right now.
One foot in front of the other- One step at a time!
Rosemary

Sorry I haven’t responded sooner although I greatly appreciate your support. Two days after I posted I again had sudden severe illness which landed me in the ICU. No early symptoms just sudden onset; pneumonia, septic shock and adrenal shock. Ambulance to ER to ICU. Home from hospital now still recovering but also still hopeful. Still made it ten months without having an admission. Very tired, have visiting nurse and physical therapy. It’s going to take some time. Thank you for your encouragement.

Thank you for your support. I would have written back sooner but two days after I posted I was again very ill without warning and went by ambulance to ER then to ICU. Pneumonia, septic shock and adrenal shock. Still recovering but am trying to remember that I had ten months without a hospitalization. Holding on to hope is important to me especially as I recover. I have home services for nursing and physical therapy and terrific family and friends, an especially supportive husband. Lucky in many ways. Very tired but that will take time. Still reeling a bit from the multiple but necessary medical interventions. Any thoughts would be greatly appreciated. Thank you.

@rckj, I am sorry to hear of your sudden development. I am happy to hear that you now home and recovering!
Sudden onset with no symptoms is frightening for sure. You are very fortunate to have been able to receive the immediate care that you mentioned. And you also are blessed with a supportive family:-)
I will add an additional reply, but first, I want to share the following information, in case you want to direct a response or question to a particular individual.

To mention another Connect member:
Type "@" and member's @username.
Select a name from the list that appears.
When you mention a person, they will get an email notification that you mentioned them in a post. It will also create a link to the member’s profile in the message.
When another member mentions you in a discussion, you will be subscribed and will receive email notifications when new messages are added.

Rosemary

@rosemarya, Thank you for the support and the help of how to use the site properly. Hope I did it right this time. I didn’t know! Also still foggy from illness so didn’t see the conventional address form. I am lucky and fortunate to have the resources I have now. The first five years of my illness wasn’t as helpful on the medical end. I have been ill for ten years which still stuns me. The closest hospital knows me quite well and is skilled in handling adrenal crisis and what precedes it. IV acsess is a hard part. I have small fragile veins and dehydrate quickly so often get a central line or picc line. They are gentle and kind but invasive medical procedures are still hard. Also I am often delirious so my memory is off and delirium itself is hard. Yet, you are right. I am much more fortunate than many others. Thank you.

@rckj
Our paths afterward are/were different but that shock of the sudden unexpected emergency is always there. Holding on to hope, as you said, is important for your recovery. I think it is even more important for your family to see, as they are a huge part of this process. You are fortunate to have their support.
One thing that helps me is to reflect on the immediate blessings of being able to receive such excellent aftercare as you apparently are receiving. Yes, it is hard work, but worth it in the long run.
Take this time to rest and recover. Allow yourself to let go of your normal obligations and focus on yourself. I am unaware of your background, and that does not matter for what I want to share - I learned it from a dear friend - Every day from 12 noon until 3PM I would take a "nap". Sometimes I did not sleep, but I rested without any interruptions while my husband took all phone calls and intercepted any interruptions.
What are some of the things you would like to talk about?
Rosemary

@rosemarya, I’m not sure where I’m going with this but the nap/downtime advice is very helpful. I miss my work. I am a psychologist specializing in trauma, physical, emotional, etc. and every episode takes me away from my patients. I have good coverage for them and they seem to still want to see me despite the absences and chronic illness issues. I hope that I am doing right by them. I worry but also must care for myself. There aren’t many psychologists in my area who specialize in what I do so I hope I am not failing my patients. My covering psychologist is good and says they are doing well and devoted to their own work but I know they worry about me and they shouldn’t have to. I tend to try to go back to work too soon and for their sake and mine must guard against that. I guess all of us have this dilemma in one form or another; responsibilities vs self care. Any thoughts? Thank you.

@rckj, Perfect! You are a quick learner!
If you would like more help on how to use Mayo Connect, you can scroll to the bottom of this page and click on "Get Started on Connect" in the first column.
Like you, my local facility knows me and that helps a lot.
My experience is pretty much limited to liver/kidney transplant. I am still eager to communicate with you, but I wonder if the Diabetes and Endocrine Group might be a starting point for conversation related to you specific condition?
https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

I hope that you continue to make steady and progress. Remember that slow progress is still progress!
Rosemary

@rckj, You are way beyond my experience! I have never been asked anything like this before. I am retired with the luxury to stay home and to simplify my activities. I certainly can feel your struggle.

I would like to invite @JustinMcClanahan, @lisalucier, @andreab, into this discussion. They might have some information or resources to share with you.

@rckj, You are a gift to your patients.
Rosemary