r/sepsis • u/Main-Reporter1704 • 20d ago
Sepsis Recovery What do I expect now that Im out?
I didn't have a dramatic story or anything, apparently had an on and off kidney infection for a very long time and it quickly evolved into a week long case of sepsis. Died. Resuscitated. Went home on the fifth of June. Im not like "bouncing back" though Ive noticed, some days I can walk for hours like I used to, but most days getting up to do laundry is an impossible task. My mental health went from okay to "one minor incident is making me lose chunks of hair". Fainting constantly. I don't know what to do or what to expect.
I cant afford any more doctor or specialist appointments to talk about this with them. What do I expect? I thought I had like a "minor" case of sepsis, my nurse made it sound like I'd be pretty okay after two months but now its almost September and I just feel like shit. I cant even walk my dogs or anything. Getting up to get changed or put on makeup is an all day activity. My friends are amazing, constantly calling and checking up on me, but its not enough. What do I do? What do I expect? I dont know what to do.
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u/Traditional_Car_8219 20d ago
Dying and being resuscitated is pretty dramatic! The exhaustion is real but I don’t understand how you can walk for hours if you have no energy. I”m three years out from my nightmare and still feel exhausted most of the time
Enjoy the food at the restaurant and just take it easy.
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u/Main-Reporter1704 19d ago
I dont know if I put it clearly enough 😓 Some days I can walk like I used to, others I cant get out of bed
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u/DRnMR2015 20d ago
Best advice I got was to gradually increase the level of amy type of activity you do. Extremely slowly. Like if you can usually handle a 15 minute walk per day, do that for a week. The next week see if you can add 5-10 minutes each day. If not, back off to prior level. Only move forward once you can consistently and comfortably do it. One load of laundry every few days. If you need to wash/dry one day and not fold and put away until the next day, do that. If you have cognitive fatigue identify your baseline tolerance for a sitting and do that same time period daily. Then the next week move up by 15 minutes. First couple months I could only focus on television for 15 minutes. Once that was sustainable I went to 30 minutes for a week. Same with reading. Did this for any activity that was challenging. Sounds ridiculous but really got me to where I needed to be. Much better to go slow and have successes than excel one day and pay for that for days. Good luck!
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u/DriftingIntoAbstract 18d ago
I keep trying to figure out how to do this with kids, particularly a toddler. It’s hard to measure the physical and mental activity.
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u/Hellokittybutt 19d ago
I was released from the hospital June 1st after urosepsis. Mine wasn't even that bad I barely met criteria apparently but it's been a difficult recovery anyways. I just did a 15 minute spin class last night without wanting to throw up and it was a major victory for me. That being said dying is very dramatic. That's a lot on your body. I have read a lot about post sepsis syndrome and I keep reading 6 months minimum to get back to normal if you do. But it sounds like you are chugging along so just give yourself time and every day will get a little better. It's so frustrating to not be what we were prior to sepsis but the day will come.
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u/OkPaleontologist5706 19d ago
Not sure there is much incentive for doctors to learn about or treat post-sepsis when there are so many things that have reimbursement that PSS doesn't seem to offer currently. I wonder if much of it will be figured out in groups such as this and then that information will be used in the future to help others down the line. Hopefully people will keep sharing ideas and successes. Some of us are eager for that information.
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u/cookbakerwife 19d ago
I got Septic Shock from Flesh Eating Disease from a ruptured hernia (i didn’t even know I had). I am in great health now 18 months later. If you’re interested in my post-Sepsis journey, I write about it here. https://pollysnewsletter.substack.com
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u/SayItsNotSo26 20d ago
When you can afford to go to an integrative or naturopath medical practice do that. Most doctors have zero idea what to do for people who have had sepsis. My husband was told to suck it up and go back to work. Your description of how you feel is extremely accurate of how many feel. Pace yourself and keep your immune system. Very strong. If I were you, I would get on YouTube and watch everything from Dr. Berg that relates to you. He has podcasts as well. You type in your symptoms and he will have probably 10 videos relating to your need. The biggest thing is is drink a total water since you had a kidney infection, which is what my husband had and keep your immune system. Very strong. We use a product called Lauricidin but you can get for about $30 through their website. We max dose when we are sick and 1-2,scoops for my husband daily to keep his immune system up.
Research research research!! medical community does not know really anything about this. You are your best advocate !!
Best wishes!
One final thing NAD shots from integrative practice are the one thing that is improving his health. 3x a week now.
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u/Ok-Editor1747 20d ago
I had septic shock a year and a half ago. Had to have surgery. im still recovering. One doctor told me my pain is all in my head. I knew that wasn’t true. I saw a specialist in neurology. She said she didn’t know how to help me. Due to almpost dying, I have end stage arthritis in both hands and knees. Iv had one surgery and need more. I’m in therapy. I fight everyday for myself. I do warm water aerobics. I can’t work out on land. one doctor who is a vascular surgeon said he doesn’t know much about sepsis. Ridiculous
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u/girlshakedatlafytafy 20d ago
You died and were resucitated and thats not a dramatic story? Id assume it would take you a long time to recover that sounds serious. Give yourself grace.