Sepsis: What's your experience recovering from sepsis?

@amylee1111 What abdominal surgeries have you had and what new surgeries are the doctors wanting to perform?
I also have PTSD from ICU. AND amnesia.

I accidentally got sent here but couldn’t believe what I’m reading. I’ve have so many health issues this could be a novel so I’ll be narrow. I had sepsis when I was 18 from a PICC line but I got lucky that it was caught before I had anything too bad, besides the PE I got from the infection. Bouncing back was slow but I’d also had 2 abdominal surgeries that year I could point the finger too and dual connective tissue disease that causes general joint, muscle and general body pain and fatigue. Not too bad right, got back to a functional life. In 2017 though I was not so lucky. I had to have a port put in, don’t remember that bc I got sepsis from that. I live in a small town right now and so after my mom had me taken by ambulance to local hospital I got flight for life’s to a bigger hospital. Again, don’t remember any of that. I was in ICU with septic shock, multiple organ failure, mini stroke and a blood clot in my neck. I was in a non induced coma and woke up unable to speak or move… I had no idea what when or where I was… not to mention the most disturbing experiences when in coma. I’m pretty stubborn so once I started talking and moving again finally I got “ok” enough so they’d send me home. I had to put a timeline of my memory together to realize I had retrograde amnesia for over 3 months. And now I am dealing with the trauma of it all. Physically and mentally. I’ve got severe neuropathy and swelling in my legs 24/7 and get weird sores that no doctor has yet been able to explain. It triggered cataracts so I went nearly blind in under a year and had surgery for those. I also don’t respond well or the same to many medications, and the PTSD I’ve had already was amplified a million times but medicine for depression makes me feel suicidal so just using anxiety meds for when the attacks come..
Doctors just seem to throw their hands up with me though. Haven’t always had the best experiences with the medical field before then anyway but it’s so much worse now. I did get back to my horses and hiking but never the same. And now I am dealing with trying to find out why I’m becoming life threatening level of hemoglobins. Whether it will be aplastic anemia or worse is tbd. And also looking at doctors wanting to go in and redo my abdominal surgeries, but im already dealing with debilitating abdominal pain for many years and surgeries that fall apart and just add to the problems. So they think Im be difficult and not wanting help because I ask them for some clarity, reality check, not sure how they would describe me in polite company. I’m alone in this now bc my father passed in 2010 and my mother 2021, she was my biggest support and advocate. Now I am barely able to function between the prior health issues and the anemia. No support, animals to care for, and a major fear of going into the hospital and never leaving. I’m one who will shove down any pain, fear or weakness and put on a smile and I’m fine but I’ve really hit my limit this month, today. I relate with the intensified anger, anxiety, exhaustion. So empathetic to everyone’s story. Was wondering if anyone has had any of the weirder symptoms I got. I’ve literally been told that I’ve more problems than they can or will help with. I’ve done everything asked, tests, procedures, invasive procedures and surgeries, and I’m sicker and worse than when my problems started when I was 13. I’m 37 now. Out of new ideas, frustrated with lack of any answers, no faith in the medical system at all. Begging doctors to help and have compassion is killing me just as much as my body. So ideas, thoughts? What would you do.

Sepis is a cruel thing to survive. For me, I have to be vigilant about any kind of infection. 12 years ago I must have had a small cut in between some toes that got infected from a shower at a gym. It turned into cellulitis that required 7 days of big time i.v. antibiotics and hospitalization.
I’m much more vigilant now in terms of cuts and scrapes.
Almost 25 years later I’m still jealous of people who didn’t lose a big part of their day to day life due a serious chronic health condition.
You will feel like giving up every now and then but therapy and SSRI’s can help that. Sometimes you have to work pretty hard just to keep your head above water.
Hang in there keep swimming.

Thank you. It is good to hear that this is real. I may be facing another heart surgery but I have never been more afraid (even during open heart surgery) than I was during and since septic shock, I am not the same. I am confused during conversations, keep getting infection, no drive, have stopped “faking it” in front of my poor six year old autistic son. I can say it’s a terrible situation, yet I’ve done nothing to address it because I’ve lost the drive. And then to learn a second heart surgery is on the horizon, makes me so angry and actually jealous of my friend’s lives.

I have a heart disease. I am only 34. I went into the hospital for a heart procedure and got sepsis and then septic shock. It has been 2 years and I have since had open heart surgery. But there are many things that are not the same about me. I anger easily, I cannot make quick decisions, I have a child on the spectrum and can’t seem to gather the strength to play with him. I am disinterested in everything. My medicines don’t work the same on me as they did before septic shock. I have been hospitalized many times since then and get terrible panic attacks where my family says I say cruel and mean things to them and the doctors and nurses. It’s a great concern

Absolutely, me too. I was intubated for severe double pneumonia & Sepsis. The hallucinations i experienced were so haunting & disturbing. I was only lucid/ rational for short periods of time & I spent it doing nothing but begging God to please take me.

Sepsis is it's own thing, and post sepsis syndrome is also a very real thing. Different. I had sepsis in November after a UTI infection one of many many over the past few years. This one gave no symptoms, my partner took matters into his hands or I'd be dead. He made the phone call, I thought I was just dying slowly and no one could help me. Delusions already. They kept me for 8 days, then home IVs for another six days. A week later I thought I was back to normal. Wrong. See my reply to Baxter near this one to hear my experience so far. It will get better, but at its own pace. I see a lot of posts about this complaint at about the fifth month and here we are. Fifth month or so. Frustration. And your sister, if she has a colostomy bag, has even more to grieve over and accept at some point. It doesn't always seem that being alive is good enough. That's the loss we grieve. I think I have worked through all the steps in my mind now, but only discovered the loss and grief part today. That give me a mental freedom to adjust to this new me, and give myself some slack. We comprise a huge group of post sepsis folks who are no being addressed and validated by doctors, so it's up to us with Mayo's group programs to do it ouselves. SO glad you are doing that for your sister. I am 78, have no one that gets it, and luckily I am used to being strong on my own. So now I must embrace patience and I think we all can bet back to an acceptable degree of lifestyle for each of us. Blessings for your sister, hope she can start some level of activity just to feel mentally in control of her life now. It will come.

I had a similar experience though no kidney issues, just an inablity to find a Rx that works. UTI recurrent for a few years but this one gave me no symptoms so went in late. Bed IVs 8 days in ER hospital unit, IV home 6 days. After a week I thought I was back to normal. Wrong. I kept finding more and more things after each week of optimism, things I had not even noticed were gone. My mind is still not functioning normally after the onset of sepsis in November. I forgot to cook for over a month, just ate what my partner brought home, and snack bars. Also gained weight with junk food and peanut butter cravings which is not like me. Exhausted by 10 am, fall asleep at the computer or at TV or reading. The exhaustion come later each day and now I am just lacking energy but I can function all day. About a month ago, I started getting UTIs again non stop, on antibiotics with no response, This with a new specialist, and now we are on the right track, an old med that kills everything for three days, then a maintenance of methanemine every day the rest of my life he believes. It's a tried method of some bloggers on Mayo's baldder page. I finally starting just doing leg lifts in the chair, very mild knee bends when brushing my teeth, then stretching, and now I can use the treadmill slowly up to 30 minutes if I have a good book in front of me. I don't want to go anywhere, even though I end up enjoying socializing when I do go out. I prefer to only go out to feed the bird feeders. I just found today this post ICU syndrome and realized I am in grief over having lost all this and feeling youth is what I lost. I was a very very active 78 yr old woman, now just a 78 year old woman. Not only do doctors not know what to say, but our loved ones and friends don't grasp the realness of our woes. Thankful to be alive, but not happy yet. You are not the exception, by far!!!! Post sepsis syndrome is a real diagnosis, we just don't get it from most doctors. Stick with this site and read, maybe learn, grieve, get angry then get over the anger and wait till you can do something physical but at your chosen pace. My appetite has evened out finally, yours will too after you are able to take any action that leads to more energy. You were through a huge amount of trauma, friend. So was your body, every cell was affected. That's a lot of healing to make it through. I don't tell anyone that I have a regimen so if I slip, I don't get told it's not good to put it off. I just do it as I am able, and you will eventually be better. I don't know if we will ever feel back to normal, aging doesn't get us fit as easily. You have fewer years than I so I have good hopes for you. Go easy on yourself, guilt is a no no. Blessings. Vicki

Thank God I saw this initial post re sepsis after effects. I thought I was just old suddenly. Loss of enhusiasm, poor posture, dragging feet, wanting to watch news but hating it. Inability to get back into the comfort of my old routines, lack of efficient time use, postponing all I could put off. Every time I thought I was back to normal, something would come back to me and then I thought it was over again. Wrong. I will tune into some of the above suggestions and tell all those around me to expect this to last a while, and not get frustrated with me, please! Thanks to all the posters on here, you are very helpful.

One more thing, I have depression which I thought was lack of sunshine this winter-- it's no just that. I still have a recurring UTI which we cannot find a good Rx or remedy for and I fear that it could end up with an ileostomy. Am I dreadfully over reacting? Thanks for input.

I had knee replacement surgery and later that day after surgery I had severe septic shock and also respiratory distress. I was in ICU a week and step down unit for 3 weeks. This happened September 25th and I still feel fatigued and very tired. My strength still isnt good. My energy level isn't good. My dr told me in 3 weeks I'll be back to myself. He is totally wrong.