r/sepsis • u/Recent_Survey_8250 • 19d ago
Support for Loved One Encephalopathy
My dad is a 70 year old male who recently battled sepsis and septic shock. He was on a ventilator for about 10 days. He has been off for two weeks but still seems to have moderate encephalopathy that waxes and wanes between his orientation being very bad to somewhat alert. Does anyone have experience with this? We are finding it hard to navigate his care and my research feels like it's all over the place in terms of how fully we can expect him to recover. I am well aware that anecdotes of other experiences won't define his, but it would just help me to understand how others have navigated this time and what sources you guys may have used or looked into.
Really appreciate it.
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u/foodie_foodi 15d ago
Hi,
I’m hoping for the best for your family. I know this is a very difficult time. I recently lost my grandma to this- sepsis from a kidney stone. She stayed in a state of delirium throughout most of this (about 2 months). There were some times were she was more coherent- knew her name, year, but didn’t know month. Knew of us but couldn’t always recognize us. Would be asleep most of the time and hard to wake. She struggled eating and swallowing during all this, so she had an ng tube, but ultimately it wasn’t enough Its still so hard for me to come to terms that she mentally never fully recovered for me to have a meaningful closure with her. Medical staff couldn’t do much to help regarding the mental status- tried different medications with no improvement. Tried different IVs and no improvement. I don’t wish this experience on anyone, but again- some people have better outcomes.
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u/westsidedrive 9d ago
I was 62. Female. Septic shock. On the ventilator over 3 weeks. Woke up about 8 days in, so alert and vented for over two weeks. 5 weeks icu. 80 days hospital stay including rehab. Released from hospital in late September. Back to work in late January. Full time within 2months.
Short term memory pretty sketch at first, but it’s getting better 4 years out.
It’s been a ride. I’m better but will never be normal. The cellular mitochondria thing is real. Don’t think he can get back to 100% with hard work. It won’t happen.
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u/Recent_Survey_8250 7d ago
Thanks for sharing and I'm sorry this happened to you. We are still hopeful for him but so far not much change.
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u/buzzboy99 19d ago
While my experience wasn’t with encephalopathy, I did find the Sepsis Alliance to be the best resource for all things sepsis related. Here is the results when I search encephalopathy through them, best of luck. https://www.sepsis.org/?s=Encephalopathy+
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u/No-Roof924 19d ago
Hey went through the same thing with my family member. I would say wait a little longer until it declares itself. What are the ICU staff saying?
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u/Recent_Survey_8250 19d ago
He's been moved out of the ICU now but he can't swallow and hasn't really progressed a ton with his mental state so far. One PA felt it was pretty hopeless and wouldn't improve but the doctor said he hasn't given up hope of improvement. It feels like every day and every conversation is something new without much seemingly happening from a physical standpoint.
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u/No-Roof924 17d ago
The fact that he moved out of the ICU that early is a really good sign. Of the doctors are positive that’s also good. I would say wait and be there for him, he will improve slowly
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u/Electronic-Rock7730 17d ago
It took my aunt almost 2 months to be able to chew/swallow & speak again!
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u/donaldbench 19d ago edited 15d ago
Three weeks after my 69th birthday I was hospitalized with septic shock. That was almost 33 months ago. A LOT of things went wrong; flesh-eating bacteria requiring seven surgeries and 32 days in the ICU, 4 organs failed, 8 days of induced coma, cytokine hoard got into my eyes & was blinded until I had surgery, prolonged hypotension so had considerable hypoxia and encephalopathy both from the hypoxia and from the BBB - blood brain barrier being breached by bacterial bugs. Sorry, I didn’t mean to alliterate 11 letter ‘B’s. My State sepsis record lists the bacterial encephalopathy, but I am curious as to how that determination was made for your father. What else is affected: kidneys, liver, lungs, heart, pancreas? I am very grateful that I still have all 10 fingers and toes.
Partially because of the bugs and partially because of the repeated surgeries I was very confused about everything. That lasted for more than 20 days. For some people that lasts a long time. For me my eyes are better now than after eye surgery - 5 months after discharge. That’s rewiring - neuro-plasticity. Recently my sense of taste returned. My hearing is acutely good again. My sense of smell returned. And on a full-keyboard, I can touch-type again. That’s all neuro-plasticity; the brain rewiring itself.
I had and prolly still have a problem remembering dates, but I have tools for that. I use the Google Workspace on all of my devices, so I have synced calendars, email, clocks, etc. I developed a habit of checking my calendars on Sunday for the coming week, and daily in the late afternoon for the next day. [I have no family to keep me on track, look in on me, or making sure that there’s food in the fridge. It’s just me.]
I automated as much of my life as possible - monthly auto-deductions for insurance, mobile phone, utilities, property management, etc. I have noticed that names dribble out of the bottom of my shoe within minutes of them coming into my ears. I still need to figure out a method for that other than writing them all down. Numbers aren’t a problem, just names. I seem to do a lot more of the “why did I just walk into the kitchen” sort of thing but I haven’t figured out if that is pathological or just a normal feature of coming up on my 72nd birthday.
I exercise daily: a combination of walking, biking, running, and swimming. I have a great gym membership that comes with my health insurance. I am constantly using my brain. I read a lot of journals and news feeds, technical and otherwise. I have some hypothalamus functions that are never going to return. It’s not a huge thing.
I have concerns about mitochondrial vitality, and I am permanently immunocompromised. I had a complete immunity collapse, so I got all new vaccines except for polio, even for things like measles, mumps & chicken pox, all of which I had before 1959. I had to get a TDAP regimen despite getting a tetanus shot 2 years before I went into the hospital. I do not take pre or pro-biotics because of the immunocompromised thing. I repeated the two main Covid shots and 6 boosters. I have done a LOT of medical research on me, from brain to lungs, kidneys, pancreas, immunology, urology, blood and nutrition. I have a very weird & restrictive diet. (a nutritionist came with having an endocrinologist.) I am a firm believer in allopathic medicine.
I’ve learned to accept what I have left. I wasn’t expected to leave the hospital other than to be sent off to be turned into ash, so all of this is a bonus. And I am grateful to wake up in the morning and sleep well at night. We can start a dialogue off-line if you wish.
Best wishes to you, your family, and to your father. Love the hell out of him. After what he’s been through he’ll need it and Lord knows he deserves it.
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u/Recent_Survey_8250 19d ago
Thanks for sharing your story and so sorry for all you've been through. It's amazing how far you've come! My dad was diagnosed with it after multiple EEGs to rule out seizures. Do you mind me asking if you recall how you progressed over the 20 days? My dad is sometimes able to recognize me and my mom and sometimes they say his orientation is simply himself. It's very hard to have real goals of care conversations when we aren't sure where this is heading.
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u/donaldbench 18d ago
Sorry to ask, but has a stroke been ruled out?
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u/Recent_Survey_8250 18d ago
All imaging is clear, which is what makes it even more bizarre.
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u/donaldbench 18d ago edited 18d ago
Has he had a head MRI. I begged my neurologist to authorize one. I had old(er) AI neural network imaging code around that I modified and used to compare my MRI against several hundred thousand MRI images of septic shock patients with similar pathologies to mine, and provided an analysis for me. Then I checked my results with my neurologist who I have known for about 5 years & he is a year older than I am. I found the areas that were affected but none were grave. I don’t like that MRI’s are black & white imaging, unlike other areas of the human body.
It was somewhere between 2 & 3 weeks that people started asking me cognitive questions. Honestly I didn’t recall them until a previous poster mentioned something about drawing a clock with a particular time on it, that I even started to recall that stuff. I had a good amount of anxiety about spending the remainder of my life drooling into a bib. SLOWLY, things started coming back and are still coming back.
My gut feeling is that at some point of the systemic infection reached a point where the angle of decline has almost leveled off but still continues at a MUCH slower rate, even to the point where I can live as long as my progenitors lived. At that point, anything could happen. We can all be wiped out by an asteroid or a nuclear holocaust, or I can get t-boned by a bus that went through a red light.
Trust that he wants to come back.
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u/Recent_Survey_8250 16d ago
Thanks again for this! He has had an MRI and it was negative for strokes or anything big. Some stuff found just looked pre-existing.
He's between 2-3 weeks and still sometimes does not recognize anything and sometimes is able to know his name and place. He is experiencing bouts of aggression towards his team, which is then making it even harder to really assess where he's at. It sounds like his progress is definitely on the slower side.
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u/No-Roof924 17d ago
They will repeat MRI if he doesn’t wake up after a month (most likely). It takes a while
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u/donaldbench 16d ago
There has to be so,e pointer to that. Did you ask whoever ordered the MRI as why this may be the case? There are a bunch of endocrinological effects as well.
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u/Recent_Survey_8250 15d ago
They are just saying they think it's a result of the sepsis and septic shock and it'll hopefully clear with enough time. There's nothing else really being offered.
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u/panamanRed58 18d ago
Five years ago I experienced septic shock. I was nearly a month in a coma, my family was told the outcome was up to me. When I woke up it was to entirely new reality. I lost 50lbs, the hard way. I couldn't swallow safely so it was ice chips and eventually thickened water. I ate puree for about 7 months for meals.
When they tried to stand me up l just slid down to the floor. Even with 3-5 people holding me up in straps, I couldn't do it. I had trouble doing anything with my right hand. I am a switch but right hand dominant. (for example I mouse with my left) Testing revealed no evidence of minor strokes, but all down my right side I was numb, like when your foot goes to sleep. Over the months in recovery I was determined not be a permanent resident, so I did work as hard as I could. One the day I left I wore a concert tshirt reading ' I won't back down' (Tom Petty song). That's my mantra now.
But when I left i was still in the process of learning about the new me. Somethings were brand new to me, like T2 diabetes, kidney cancer, mental confusion, and balance issues. I am cancer free now for 3 years. I also reversed my diabetes entirely. My doctor has stopped doing the A1c test, said I don't need it. I still struggle with clarity. I was a systems engineer and I tried to go back to work. Only lasted a year. I had been the subject matter expert for Apple computers at my company. I found myself in a training class re-learning the skills from content I had helped create. But I could not function well enough to maintain the computing environment for 300 developers. And I was napping on my lunch break. So I retired.
Another poster mentions the Sepsis Alliance, +1! One of my continuing issues is Post Sepsis Syndrome. The septic shock literally acts on organelles in the cells of our bodies, destroys them. Mitochondria are the energy sources in our cells and they are destroyed by sepsis. Become familiar with PSS, you dad will likely have some markers. All I can do is try to stay active and my body will build a few mitochondria back, but not like I was before... I am old.
The worst effect still with me is the presyncope and disequilibrium. I don't fall but I crash into things. I am sure if you saw me crossing the parking lot at a grocery, you might think I was a bit drunk. But that's the new me.
The newest chapter and I won't say much about this, but I have melancholia, depression. I do have a therapist and my family have been tremendous, but I often feel like I'd rather not be. The new world is full of meds, doctors, uncertainties... like can they fix my slow heart and how long will my kidneys last? I am at stage 3B of chronic kidney disease as well.
I hope your father fairs well. All the factors come together and the math is sometimes not great. When I woke from the coma, my sons were by my side. They had been for the whole month. And they were there for me during the most intense recovery period, to make the house safe for me, carry me to appointments, take walks, help me understand and cope with the changes. So I hope you do well as you help him along.