Sepsis: What's your experience recovering from sepsis?

Posted by sepsissister @sepsissister, Dec 12, 2011

Is anyone out there living with sepsis? My sister was admitted to the hospital on Nov. 1st with severe abdominal pain. Test found that she had a mass blocking her intestines. I will try to keep this short...she had surgery to remove part of her colon and large & small intestine and the tumor that originated in her appendix, (appendiceal cancer is rare) things were fine for a few days, until the sutures in the intestines let loose, the resulting bile leaking into the stomach cavity caused her to be septic. A colostomy was performed, and she survived the septic shock. She is now home, and trying to recover from the sepsis. She is very frustrated by the lack of strength and energy that she is experiencing. We know so little about this. We do know that it is extremely serious. Is there anyone out there who can share there experience with sepsis?

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@tbaxter33

About 10 years ago, I had an onset of fever due to an infection in my foot (I was 50 y/o). Within a few hours, I was in full septic shock. Spent about a week in ICU then a week in regular room before going home. Had "cardiac event" due to low blood profusion, kidneys stopped working, etc. Had several dialysis sessions. Wife was being told to prepare for the worse for several days. I stayed home a week after release from the hospital, then went back to work. I can tell you that I am not the same person today. I tire so easily it is nuts -- and so frustrating. I have talked to doctors about this and have been "blown off" 100% of the time. I do not think they believe me when I tell them how badly I am feeling. I continue to drag myself in to work every day. I used to get to the office about 6:00 AM and work until 6:30 or 7:00 PM. Now, it is all I can do to get in by 8:00 AM and I am out as soon as possible -- totally wiped out -- at the end of the day. I have no stamina at all. The reduction of activity has contributed to weight gain, which I hate. I do not mean to be discouraging. Your sister will feel better, but I suspect she will never feel as good as before. Remember, I have not found one single member of the medical community who will talk about this. I continually get "lose weight and exercise" as the answer. I know I need to do both those things, but they do not seem to understand that I am totally wiped out when I am not at work. Perhaps your sister's journey will be brighter. I would love to know if others have had similar experiences, or if I am an exception.

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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.

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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.

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@tbaxter33

About 10 years ago, I had an onset of fever due to an infection in my foot (I was 50 y/o). Within a few hours, I was in full septic shock. Spent about a week in ICU then a week in regular room before going home. Had "cardiac event" due to low blood profusion, kidneys stopped working, etc. Had several dialysis sessions. Wife was being told to prepare for the worse for several days. I stayed home a week after release from the hospital, then went back to work. I can tell you that I am not the same person today. I tire so easily it is nuts -- and so frustrating. I have talked to doctors about this and have been "blown off" 100% of the time. I do not think they believe me when I tell them how badly I am feeling. I continue to drag myself in to work every day. I used to get to the office about 6:00 AM and work until 6:30 or 7:00 PM. Now, it is all I can do to get in by 8:00 AM and I am out as soon as possible -- totally wiped out -- at the end of the day. I have no stamina at all. The reduction of activity has contributed to weight gain, which I hate. I do not mean to be discouraging. Your sister will feel better, but I suspect she will never feel as good as before. Remember, I have not found one single member of the medical community who will talk about this. I continually get "lose weight and exercise" as the answer. I know I need to do both those things, but they do not seem to understand that I am totally wiped out when I am not at work. Perhaps your sister's journey will be brighter. I would love to know if others have had similar experiences, or if I am an exception.

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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

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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.

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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.

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@mariamarconi57

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!!!

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

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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!!!

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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.

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@pumpernickel

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

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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?

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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

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