Sepsis: What's your experience recovering from sepsis?

I am better but my experience occurred in May 2014. Bacterial meningitis of my brain multi organ failure sepsis on a vent. I was coded. I remember being very weak in the nursing home as PT worked with me. After I got to my new apt I had palpitations fatigue . I slept during the day when I needed it. I am 64. I have ptsd..I get anxious in small spaces. My husband and I live in an RV ..I wonder if this is related to memories of my intubation.

I had been having episodes of chills with whole body pain for hours that would change to bed soaking sweat also lasting for hours. I had those for over a month. Sunday 1-19-25 I woke up to use the bathroom and could not set up. When I tried I would just fall over. I don't remember much. It was like an antenna TV that would just get reception for a few seconds then nothing. I remember calling for help. I remember being inside an ambulance and being bounced around. And I remember being in a hospital ER room. Sometime at the hospital I was taken for a CT scan but have zero memory. It showed my ascending large bowel inflamed and infected. My BP was really low. 70/40. That is why I could not setup let alone stand. I did not have enough BP to reach my head when I tried. A blood culture showed the infection had spread to my blood. But that took several days. I also tested positive for COVID. By noon Sunday the 19th I was a lot better. My blood pressure was back up enough that I could stand and walk. I was on IV antibiotics for a few days then sent home with oral antibiotics. When I came home I realized how weak I was. I did a lot of sleeping the first week. I was released on Wednesday and stayed at home for 10 days to self-quarantine for the positive covid test. I had someone grocery shop for me on Friday the 17th. I was able to shop for myself on Friday the 24th. Took a lot longer than usual and more trips around to get what I needed.

I was diagnosed with Pan Can June 3rd 24. I had Whipple surgery 7-12-24. I had a severe reaction to Chemo in 24 hours of my first dose and was told to stop taking my oral meds. I went to palliative care and had been considering moving to hospice care. Blood test have had some really high numbers. Alt Phos was in range 1-8-24(44-121) at 118. 8-20-24 after the Whipple surgery it was 158. 9-13-24 it was 249. 11-12-24 1198. In the hospital it was still in the 1100's. But last Thursday when blood tests were done again it jumped to 1800's. Bilirubin has just recently climbed. It was in range 1-8,8-20,9-13,11-12-24. Last Thursday it was 4.7. Range is 0-1. CA 19-9 was 1567 6-4-24 when my tumor was found. Then 36.7 8-20-24 after my Whipple surgery. Range is 0-35. On 11-12-24 it bumped to 222. Last Thursday's blood work showed it in the 1300's. Really don't know how much concern there is with that CA 19-9 as I have read that an infection can cause the number to be high. I am concerned a lot about the ALK PHOS and Bilirubin numbers.

Palliative Nurse called today and moved up my next meeting to next Wednesday to talk about the test results. Hospital requested a follow-up CT in a month but did not state what for. The CT scan did not say anything about finding any new tumors. Only that my liver and Spleen were enlarged also. Trying to figure out if I do have more cancer going somewhere or if it is post Sepsis that is causing me to feel this way. I guess it could be both. I have a DNR and do not want to be cut on again. I am for taking antibiotics or other medications that are not harmful (like the damage and pain chemo would cause) to make me feel better. I do not understand the limits of treatment with palliative care. Or if it is Sepsis that is causing my liver trouble (high ALK Phos, Bilirubin) and high CA 19-9 numbers. No need to worry a lot about as they both take me to the same place.

I'm tagging @dbrima to make sure they see your encouraging post, @smokeychip1.

There's no doubt that sepsis and serious illness in ICU affects not only the patient, but family and those supporting them. @smokeychip1, have you heard of post intensive care syndrome (PICS) and post intensive care syndrome family (PICS-F)?

Thanks for thinking of me. I am 9 months past my second open heart surgery and 2 years past my septic shock. I still do not know if it’s post septic shock that causes this great confusion or recovery from 2 open heart surgeries. I have heard it takes time after open heart for my brain to understand the things that were done to my heart. However, I find it difficult to keep up with conversations when I am out with girlfriends or planning and scheduling play dates for my son. Total confusion. I also am becoming apathetic about things that I was once highly interested in. I think the trauma of the past few years has caused some of this, too. Maybe PTSD?

No I haven't but I can do some research on it!!! Thanks!!

@andreab, a Mayo Clinic ICU nurse, writes about PICS and PICS-F in the Post Intensive Care Syndrome (PICS) Blog https://connect.mayoclinic.org/blog/pics/

There are several blog posts, but you might want to start with these:
- Breaking it Down: What exactly is Post Intensive Care Syndrome? https://connect.mayoclinic.org/blog/pics/newsfeed-post/breaking-it-down-what-exactly-is-post-intensive-care-syndrome/
- Breaking it Down: Post Intensive Care Syndrome and The Family https://connect.mayoclinic.org/blog/pics/newsfeed-post/breaking-it-down-post-intensive-care-syndrome-and-the-family/

I'll be interested to know if any of the descriptions and definitions resonate with you.