Sepsis: What's your experience recovering from sepsis?

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.

@mariamarconi57, how is your husband doing now? ICU is hard on family members too. How are YOU doing?

My husband was treated with severe ecoli infection. Had to have 2 weeks of infused antibiotics. He felt also frustrated the first days after his released just like your sister because of lethargy, etc. But as his condition improved and his level of anemia was not so down, he regained his strength. Just patience and support!!!

As an 18 1/2 year post transplant person, I've had my dealings with sepsis quite a few times since being immunosuppressed just makes any bug that comes along that much happier to settle in and try to murder me. Luckily, even if I don't realize that my crazy shaking with chills, fever and semi-delirium, my husband does sorta get the idea all is not well. My last time was 2 years ago when, despite fully vaccinated, I came down with Covid. No room at the inn at the little hospital where we live so we were sent to another 100 miles away. By the time we arrived, I also had a UTI, C-Diff and norovirus. Heavy duty antibiotics (which of course cause "heavy loose duty" if you get my drift) but finally did the trick. Fast forward to last Thursday: oh no...same symptoms! Yup, sepsis and despite vaccination in October, RSV. Hospital, IV antibiotics and bad hospital food. Home now on oral Augmentin antibiotic and on the mend.

Oh, Esther, I'm happy to listen and I do know exactly what you mean about the horse and water. That's a tough spot to be in...wanting more for someone than they want for themselves.

Taking medications can definitely alter one's thinking. Let alone the depression, fear, and anxiety that sets in from chronic conditions.

I had experience with too many meds and was addicted to medication, but not an addict. There is a big difference.

Does your daughter take addictive meds like opiates? Is she working with a competent care team?

Thank you so much. My daughter will not listen to anything i have to say. She suffers from too much drugs yet she is not addicted at all, I as her mother have worried about her since she got Chrohns at 24. You know the old saying you can lead a horse to water but you cant make them drink. She gets mad at me. So i am backing down and keeping my mouth shut. When she needs money she will call
I really appreciate you listening to me
Regards Esther Fox

@pumpernickel Hello there. My heart goes out to you. I remember how difficult it was for my mother when I began having chronic pain, symptoms, depression, anxiety and was in physical and emotional distress. She so badly wanted to help me and tried in her own way, like you are trying by reaching out on Connect.

As @colleenyoung mentions, I attended Mayo Clinic's Pain Rehab Center where my life was turned around to a new direction of pain management, emotional and behavioral management and chemical reduction/elimination. I was taught tools to succeed after the 3 week rehab program was over and finally had a plan.

My disabilities began at 43 and by 46 I was no longer able to work. It's life altering, but with effort, support, and a plan, things can get better. Quality of life can improve. There has to always be hope for a game plan of strategy and acceptance.

What can I do to help you help your daughter? What is the first piece of her puzzle that you think she needs help with?

Hello @pumpernickel

I am so sorry to hear about your daughter. Just short of 3 years ago I had cellulitis of my arm and was quite surprised and disturbed to go into sepsis. It was the worst experience of my life (and I've had breast cancer twice). It is truly a game changer for your body overall. it also sounds like your daughter still has issues that need to be addressed medically. I know, first hand, that's easier said than done due to costs, availability, access - so many things. I can share this.....fight the medical system, despite how difficult and make sure your daughter is getting the medical care and support she needs. Make sure and ask if they can provide financial assistance and get all you can to reduce that stress factor. Also, I didn't have complications in hospital from the sepsis but came close. I was 62 at the time and I have never felt the same since. There are psychological traumas I still feel around illness and the memories of the sepsis. I feel tired, have gained weight, have odd, unexplained symptoms now that doctors simply can't or won't address. I feel 10 years older. I keep plugging along and hope that I can keep my health going and feel better again and I think that's possible but it takes work. Finally, I care for my husband who has a rare form of cancer the doctors don't understand well. I am his advocate and if I weren't here, he'd have died long ago. Please try to find the strength to be your daughter's advocate and look for answers and support. I am sending hugs. This is a tough world to be sick in these days but with patience and care, hopefully she'll be getting better and back to a better quality of life.