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recovery from sepsis , head pain ,fatigue
Hi not sure if I am posting inthe right place, but.... I recently had sepsis was taken to emergency and spent some time in ICU , had a close call, with very low bp, kidneys failing hallucinations etc etc. I pulled through and am home now. I have been resting for nearly 3 weeks and am not feeling myself. I have head pain, pain behind my left eye , general fatigue and have had a couple incidents of memory loss. ie; i could not remember my street address. I am still unable to go through a normal schedule for a day and have maybe a 2 hr window of energy in the mornig before needing to lay down again. what is going on, what can I do to recouperate faster. the doctor has recommended I see a neurologist. I am frightened, normally a very active, healthy 42 yr old woman. I have had ct scan, ekg, chest xray etc etc while inhospital and nothing was showing of concern. please share info, help, advice.
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Please, has anyone recovered?  At this rate, applying for Disability will have to be the next step.  I will find out more in a couple of weeks, but reading all the stories makes me so sad.  It has changed my life as I am alone now, and I really hate it, but I'm too weak to do nearly anything, if I knew it would last for years more, I could not handle it.  I know how you guys feel, I have gone to bed many nights wishing that if I could not find a cure, I would rather not wake up.  I'm so sorry to hear of so many people suffering and going through what I have experienced for 6 years.  It looked like I was getting better for a while (at least I was putting on weight), then the second infection came on again in 2011, and it was all down hill after that.  I will let you know what I find out and if my treatment helps.  Waiting does not help, going to the Emergency Department does not help.  
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5067301 tn?1363105311
I, too, have applied for and been denied Disability.  I am now looking for a Social Security lawyer to aid me in my quest. (I am currently being assisted by the state.) The reason for denial was that there is stlll worthwhile work that I am capable of doing. Sepsis has left me with a weakened heart (dilated cardiomyopathy) and chronic problems related to my genitourinary system. It has been 10 months and I am still on the mend...and STILL ALIVE. (God is good.)  My doctors and myself were surprised at my denial. My advice...get a SS lawyer BEFORE you file.
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Hi I too had sepsis in hospital 10 days in ICU 2 days very serious stuff I had a 7 kidney stone with a hook .Everything went crazy . It's been 2 months was sent home with a stent in the kidney for a few weeks . Had it removed  . I was one that could not sit still .Now I have little energy not hungry , headaches , and my bones hurts . For the last 3 weeks I thought I picked up a virus but ws told the 3 to 4 hours of chills and then the same for the fever could have something to do with septic shock Was told I need to allow my body to heal as so many organs need to repair themselves . Just find the energy part annoying I get so tired so fast .Im on an antibiotic which I will be on for a year so I don't pick up any infections . Anyone else not feeling hungry. . I have to watch myself as I become dehydrated so easy . I was told this could take months to clear .
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Wow....reading these comments are quite scary...I was recently d/c from the hospital after 8 days of Iv antibiotics for sepsis caused by cellulitis related to a history of breast cancer (3 years ago). I am extremely fatigued, experiencing joint pain, and mild confusion...I thought this was something that you just "popped" out of...didn't realize how serious it was....thanks for all the comments, definitely made me feel better....
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Hi how long did it take you to recover?  I am 57 female was very active and had sepsis in Jan. due to a kidney stone.  Was on a vent for 7 days.  I have come along ways but it is 5 months and still not myself.  I am very very frustrated!  
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Oh I am so so sorry to hear your story.  I was septic in Jan. and here it is July and I still don't feel good.  My dr. Doesn't understand I get upset.  I have made great strides but not 100 percent.  Do u have my suggestions??
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I sent you a message.  It sounds like we have similar circumstances.  Please let me know how you are now.
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Wildchild340000 - I am just reading these posts on July 8, 2013.  I have had cognitive impairment since my first bout with sepsis in Aug 2011.  Since then I've had it a total of four times.  No one can figure out where it is coming from.  One doctor thinks it's my urine but the cultures all come out negative.  I must say that it took me a long time to feel better because I got a second episode in Oct 2011 just two months later.  I was unable to return to my job due to the cognitive impairment from the first round of sepsis.  I'm interested to hear how you are doing today.  

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hi there i had severe sepsis organ failure 4 yrs ago spent 7 days in coma in icu...Im still recovering now it is a very slow and painful process,Some days are good and some not so good,i have muscle weakness and get alot of aches and pains in my joints and suffer with bad memory...took a good 2 years to even start to feel a little normal whatever that is now lol but it does get better just have to hang in there, Considering i wasnt ment to make it its a small price to pay :) Chrissie 37 Melbourne Australia
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It's been 3 years since I had sepsis, and you are right it took 2 years to begin to feel somewhat normal. I too still have abnormal fatigue some days. I take vitamins and supplements and eat healthy and try to exercise. I've been depressed and lethargic. I also have psoriatic arthritis. I drink protein powder shakes, take Coq10, vitamins, calcium & magnesium, lysine, and vitamin D. Everything you can do, that is healthy and good for your immune system will help some. But time is the biggest factor. I realize that there are going to be days that I don't feel like doing anything, on those days, I rest, sit outside, read or take a long bath. On the days I feel good, I do what has to be done. Hope this helps someone.
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I had sepsis over a month ago and am still weak. I am a truck driver and after 11 or 12 hours of driving feel as though I have been for 24.
I ate a pre cooked hamburger at a truck stop and 7 hours later started having seizures.
I had salmanella poisonin. (Hope I spelled it close) which turned into ensephalitis, then septic shock.
I was in ICU for 4 days.
I still have memory loss, fatigue and just don't feel well at all.
My right kidney still hurts also.
Just wanted to share this with you. By the way. My second night in ICU my bp was 50/28. I am 69
Bobbie
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this time last year I had a emergency operation-I had colon cancer-a few days later I got sepsis-another surgery & was put on life support for 4 days-I was full of drugs and sick-I was in icu for a month--now I have a colosotomy bag-no fun--go home long recovery-cant walk-started chemo-did one round was deadly sick-I stopped-hair fell out&skin off my feel came off(chemo was optional 3% towards the 75% to survive)then a few months later I get colostomy bag removed(great)-well I just don't feel good-my head is foggy-hurts-tired a lot-cant do much past noon before I feel dead tired beat---I take one a days and iron!-all the doctors I seen say all tests are coming back ok-gyno-mammo-skin-head-etc---I see cancer doc every 3 months-results ok---I was reading on here about everyone who has had sepsis and it seems like it matches up with mine-I am just worried it don't feel right I don't feel like me anymore-confused-tired-foggy-headache-etc--I am 48 and also going thru menpause-i cant take any meds for that since I had cancer-also I have anxiety and worse since all this happened-I have meds for that-now wed I am going to get a colonoscopy-no fun!!-is there anyone out there that can help me out???

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My daughter just got out of the hospital after being treated for  sepsis. Strangely, she has been complaining of her gums behind her teeth hurting. Your post is the only place I have seen this symptom mentioned. I am so afraid that the sepsis is not completely gone.
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I am 19 years old and I had septicaemia 4 times.I am lucky to be alive!The first time I got septicaemia I was 10 years old,I got it from a central line infection(had leukemia at the time).Aged 14 I got lyme disease and was paralysed from my neck down for a year I also had Borrelia burgdorferi septicaemia .When I was 16 I had meningococcal septicaemia and was in hospital for 5 months.Two years ago I had a routine gastroscopy that went terribly wrong and I ended up with septicaemia,coma for four months,hospital for 8 months.
I have had a tough time but thankfully I am here today to tell my story.I am learning how to walk again and getting better at it every day.I do have memory problems which is so frustrating at times but I guess that's only a small problem,I'm so lucky to be here!
I am having a bone marrow transplant in 3 months time so hopefully that will help me and hopefully I'll never get sepsis again.
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Wow, I truly had no idea there were so many who have survived the same thing I managed to survive.  I didn't realize I was getting sick.  Until my family noticed I was odd acting and saying things that made no sense, and eventually fell onto the floor, they didn't realize how sick I was getting either.  I was airlifted to a major hospital nearby and put in an induced coma for 40 days.  During that time the infection in my blood had gone to one of my replaced knees so that was washed out, replaced again.  In and out of rehab, other knee out, first knee out gain, pocket of bacteria filled nastiness in my back taken out....on and on.  Had to learn to walk, swallow, talk, etc.  Life isn't the same.  I'm not as active as I was before this.  It's been a full 4 years now but my memory fails me a lot, I can't think of names, a word I'm trying to come up with etc.  It truly worries me that I'm carrying around this infection and it could attack at any time.  I tend to fall a lot....am dizzy and just don't have good balance.  None the less, I'm  thankful to be alive in this new chance at life.  I'm 67 and hope to be here a long time.    Carol/Michigan
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Have had this since 24 September in hospital for 3 weeks of antibiotic / fluids got out and then had a relapse and ended back in for another week. Have liver damage now but am home and eating well - have lost around 60lbs.  No headaches but back ache and my memory is affected I cannot remember a lot of the last year and sometimes get emotional.  I blame myself and feel I have left my wife and family down - it happened 2 days after I lost my job so unless I get back to fitness within 4 - 5 months I will have serious financial difficulties.  However I am alive, am only 51 and got a great family so bring on any fights I am well up for them.
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I have just read many stories pertaining to what I've just been through...makes me feel not so alone and helps me understand that the pain and frustration I've lived for over four months was real and justified.I spent a month in The hospital(1week in ICU), then 3 months in a rehab PT hospital.I had reactions to medicines that shut down my kidneys and had unbelievable pain in my joints(knee,ankle,both hands,elbows and one shoulder).I basically needed help doing everything at first, It was very humbling..can't  say enough about the nursing staff !!!    Reading these stories helps me realize my confusion,depression,and emotional rollercoaster are shared by many...It's hard to explain to people what this illness is like without sounding like a whineass,but it's something you wouldn't wish on anyone..I'm still learning to walk after having my ankle and knee surgically cleaned out,and I still have a long road ahead of me like many others..you have to go easy and steady and hopefully have the support from people close to you..I couldn't do this without my girlfriends love and support.  I hope anyone who gets this , lives through it and has a speedy recovery
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How is he doing.  My Dad has the same similar problem.  He's in ICU right now.  He had is gallbladder removed 7 weeks ago, and 5 ERCP's.  I'm really worried as he still develops stones in the bile duct.  Doctor's are concerned.  Thank you!  Look forward to your reply!
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Hi! I'm glad I came across this website. I survived Severe Sepsis last December 2013. I was in the ICU for 6 days and 3 days in a regular room. It all started with a UTI. I thought that by just drinking cranberry juice and resting will make me better.  I was wrong after 3 days, I couldn't breathe, i had fever, chills, no energy and had rashes on my legs. My husband took me to the ER. I woke up after 3 days in the ICU. I didn't exactly understand what was going on. I had kidney failure, my blood sugar went up to 770. I was on life support and had dialysis twice. I am thankful that my Doctors saved my life. I am still recuperating and it is not an easy journey. I have less energy, joint pains, muscle pains and loss memory. I am 40 years old and i feel like my body aged 20 years.
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I had sepsis last month due to uterine artery embolization , I had chills, fever and wall climbing pain in my abdomin, then the last 20 days were in hospital were hell , i was in and out thinking this was the time for me to go.May be this the way I suppose to die. my treatment of antibiotics was failing then It started responding and I was discharged with oral antibiotics. Now I feel so much weakness and feel so tired sleepy all the time. my hair falling and my body n legs hurt all the time. I lost 10kg weight in hospital. I survived but I am still in fear that it might come back. I wish no one will have the sepsis as it can change your life and months to recover to your body. wish all speedy recovery
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My Fiance who is 49 yrs old just got out of the hospital ( 3 weeks ago) from sepsis after a prostate biopsy. The day after the biopsy he began feeling fluish and his  fever went to 104.9. got him to ER and he then had another few days of seizures and fevers over 105. They believe he suffered a heart attack during the episodes and needed to catheterize him because of an enlarged prostate. He always had reactive airways bu the could control it . ever since the sepsis his breathing has become a daily problem and it really makes him depressed. The docs put him on two broad spectrum antibiotics to control the sepsis. While in the hospital they did a heart catheter and found a blockage and inserted a stent. He went from being a healthy active man on no medication to taking heart meds, prostate meds, breathing meds & anxiety meds. He lost weight and feels terrible and weak. I saw him cry over his health and feel so helpless . He is going in for an MRI because of a dull pain every time he urinates that radiates to his buttock. I pray every day that he will begin to feel a little better. This experience made us realize how fragile life can be. God Bless all who are going through this
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At 67, I had a bowel reconstruction surgery (due to bad scarring from diverticulitis) October 2013. Days after the surgery I was back in the hospital for Sepsis. 3weeks in the hospital on heavy duty antibiotics, which saved my life. I agree it's important to find an infectious disease doctor to treat you. When I returned home, I was completely debilitated and needed help to do anything, had no strength or stamina. It took 3 months to finally start to get my strength back. I had blood work done weekly to make sure the infection was gone, very fearful it would hit again out of the blue. During the 3 month recovery I was depressed. I had never experienced anything like this. I couldn't write or have the attention span to read. But no one told me about losing my hair or other minor ailments I would have after recovery, i.e. I feel soreness in my hands, despite being on a diuretic my hands swelled and my wedding ring had to be cut off. I am grateful to be alive, grateful I had the right doctors, grateful for a caring husband who stayed with me 24/7 to make sure I was getting the prescribed treatment (many mistakes in the hospital), and grateful to have found this site. Be strong and keep the faith my brethren.
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So glad to find this community. I am 49 and was treated for sepsis on August 20, 2014. It is now October 3, 2014. I have been discharged by my ID doctor and he said I should be fine but my GP tells me it will take months for me to get back to normal. I had an abscess on the back of my head, that is what caused my sepsis. Never had one before. Anyway, some days I can do a few things and I feel relatively o.k. O.k. being somewhat tired and short of breath. I am able to go see my grand babies and maybe do a simple household chore like cleaning the kitchen table, taking a break, making myself something to eat, taking a break etc. I do think a little slower than before.   I will have another day where I am totally exhausted, bad shortness of breath, chest pain and feel horrible. I guess I just need to learn to accept each day for what it is and go with it. This forum has been more helpful than almost any doctor.  Thank you guys!
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I recently was discharged from the hospital after 8 days in the ICU. I am a 31 yr old female, normally very active, athletically fit, and could previously do pretty much anything I put my mind too. I had initially went into the ER with severe abdominal pain on October 6,14. At that time I was rushed into emergency surgery after a ct/scan showed 3 cysts on my left ovary and one of them was leaking fluid into my uterine cavity.

During my laproscopic cystectomy, the Dr.'s also removed my appendix and realized I had severe stage 4 endometriosis. I spent 4 days in the hospital following and went home.

I slowly started to develop a slight fever about 5 days later, which was climbing more and more each day. I spoke with my Dr. over the phone, and she advised me to come in only if the fever was accompanied by pain, nausea, or vomiting. Within a few days it escalated to the a fever of 103.5°, the worst chills in my life, severe leg and foot cramping (charlie horses) followed by profuse sweating, speach impairment, disillusion, and blurred vision.

I was brought back into the ER on October 17, 2014 going into septic shock. I could not speak, walk, stand, or move on my own. My blood pressure was so low, they could not give me anything for the pain except tylenol. They ended up inserting a catheter I.V. into my neck, in order to pump Nor Epinephrine straight to my heart so I wouldn't die.

I remember several nurses telling me that night that, I was the sickest person in the ENTIRE hospital. (That was an eye opener of what was yet to come) The next eight days in the ICU, where the ABSOLUTE WORST days of my life! I can't remember how many times I woke up screaming for them to just let me die.

Apparently, I developed an infection as a complication from my first surgery, which led to an 11cm absess forming in my abdomen, which now had to be drained. They surgically implanted a drain tube from my belly, that emptied into a little plastic squeeze bottle that was saftey pinned to my hospital gown. I had no idea during this time, why or how sick I was, or that I was even diagnosed with Sepsis. All I was told, is that I had an infection and was very ill.

I was sent home with oral antibiotics for 10 days. 2 pills 2x's a day. Even though they were making me sick to my stomach each day, I finally took the last of them yesterday. I stopped taking all pain pills almost immediately after coming home because they told me, more than likely it was only adding to the irritation of the antibiotics making me feel sick.

Some days are worse than others, and it feels almost as if I had more energy in the first few days returning home, than I do now. Even though the antibiotics said to avoid direct sunlight, I have found the sunlight to be one of the best healers for me physically and mentally. I have gone out on 2 bike rides, which I over did it a little on both but it felt good to regain some strength back even if it only lasted a few hours. I feel the cognitive decline in my everday interactions with people and family, and its so very frustrating. My words just are there like they used to be, my spelling is also off now, and my arithmetic is not something I even want to engage in after all this. I hope these are not long term effects but only time will tell, as Im learning a whole new meaning of "PATIENCE!" I wouldn't wish this on my worse enemy but can honestly say, for me it was a blessing in disguise. It has forced me to completely turn my life around, change directions onto a better path, have a new appreciation for life, and ultimately it has forced me to stop smoking cigarettes after 15yrs, which to me is a huge achievement, I wouldn't have done... Had I not gone through this terrible time.

Just remember, THERE IS A LIGHT AT THE END OF THE TUNNEL, it just takes very small baby steps and an extreme amount of patience to get there. If your still here and reading this, then obviously it was not your time to depart this earth and like me, we survived! Keep your head up, roll with the punches and it will get easier.... In time ; )

- Ariana
California
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139792 tn?1498589250
Leaving smoking after 15 years is a super achievement. Even after your ordeal, it is not easy to leave smoking. The moment you feel little better, your urge to smoke is aroused and you will think of taking few puffs and then start again as a full frlegged smoker. I smoked for 50 years. All techniques, yoga, and varied holistic therapy did not hep me to stop smoking. Even the death of my wife did not help me to stop smoking.No technique, no meditation, no medication helped me. At the age of 74, i stopped just by a fluke.This is my greatest achievement.The second challange is sleep meds. I am taking alprozolam 1mg. and zolpidine 5 mg. since last 20years. I did try tappering off with no results. I stopped for 2 days. I had no sleep for 2 days and on third night, i started getting stinging sensations. I thought I am dying . I did some breathing exercises and had natural sleep. For 4 days I was hallucinating. I had to take my meds. I am still taking it. your message is very encouraging. I am sure it will help many to overcome their problem. Thanks for sharing your exeperience. (no spell Check is done)
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My aunt had a relatively pain free life until she was 85 when she had a surgery and got sepsis.  we talked nearly every day and she said that having sepsis was the most painful thing she ever experienced.

i read your post and just had to stop and wish you continued good health

M
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I'm sorry you are going through this.  I had sepsis from a routine hospital admission. I think I got it through my IV.  I was very ill with Lupus going in and at high risk for infection.  I spent 4 months in the hospital and one in the nursing home.  I lost eye sight in one eye, infected heart twice, neuropathy to both legs.  I was re admitted 8 times the following year because my health was so frail.  I am only 47 years old now in December 2014.  It's been two and a half years and I still feel very tired. I have numbness in my legs. My heart has a thickened valve.  I did not see any real signs of my old self for a year and a half. I actually feel I have post traumatic stress from the event.  Take it easy, it will get better, but you may never return to normal completely. You may have to accept and adjust to limitations.  Best of luck, Debra
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My 78 year old mother had sepsis real bad also and almost died. We went to a ID doctor and he said they could not find anything wrong with her. She is bedridden and can not even stand. Can you post the name and number of your ID doctor. What state and city are you in ?  Thank you.
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I just found this form and have read all the post. My 78 year old mother is bedridden and can not even stand up anymore. Her ID doctor has told us she does not show SEPSIS in her blood tests. But she is still very weak and her mental clarity is not good. Its been over a year now. Does anyone know of a doctor in the Las Vegas, California or Arizona area that understands how to help post SEPSIS patients. The doctors we see now have no clue what is wrong with her.  Best Regards.
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Have been home just 6 wks and thought I'd feel better by now. I'm still as weak and have trouble walking as I did in the Hospital. Spent 3 wks in critical care with all kinds of tubes in me. They told my husband more than once I probably wouldn't make it. I wouldn't wake up so they kept putting breathing tubes in my throat.. The dreams I had seemed so real and really scary.  I thought I only had a bad chest cold when I went in and before I left I was told I had a heart attack, kidney failure, gallbladder disease. It turned out I didn't have any of these. (Well I guess I did have what they call a stress heart attack) I'm thankful to be home and I'm lucky to have such a good support system. Mainly I thank God for bringing me back from what seemed like the dead.
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Hi Sharon,

I am so sorry to hear about your serious illness and sepsis. My heart goes out to you.

I will suggest that instead of adding on to an old post that next time make a new post. That should get better responses.

You have been through a lot. Your body experienced a major insult or trauma. It will take some time before you return to pre-illness condition. How long? In my experience it varies from individual to individual. Some ppl seem to recover in 3-4 weeks, others can take months.

So don't be too hard on yourself. Have patience and follow your physician's advice. Don't be afraid to consult your physician and tell him/her how you feel, express your concerns. He/She may want to do some labs.

I am so glad that you made it through such an ordeal. Take care my dear. Please let us know how you are doing.

My best to you,
Tuck
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i am 2 years post severe sepsis shock........
I still am not back to 'normal'......
Head aches...joint pain...MEMORY problems...sleep problems (what is sleep?)...FATIGUE (big time!)...
I belong to some groups that seem to help, a little. They listen!
Doctors and most nurses have NO IDEA what SEPSIS is and have NO IDEA, WHATSOEVER! On how to deal with post sepsis!!
I am not,the only one.....I just talked to a lady who is 10, yes TEN years post and still has problems!
WAKE UP OUR MEDICAL COMMUNITY!!!!!
Teach....maybe ONCE they will hear us!!!
Sue
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547368 tn?1440545385
Hi Sue,

A tardy welcome to Senior Health at MedHelp. I'm sorry to hear you have still not returned to "normal."

If you read this old thread you know that I suffered numerous episodes of sepsis. It's a long journey "back".

As you certainly know there is a recognized condition called PPS, or Post Sepsis Syndrome. From that web-site I found the following:

"Post-sepsis syndrome is a condition that affects up to 50% of sepsis survivors. They are left with physical and/or long-term effects, such as:

    Insomnia, difficulty getting to sleep or staying asleep
    Nightmares, vivid hallucinations and panic attacks
    Disabling muscle and joint pains
    Extreme fatigue
    Poor concentration
    Decreased mental (cognitive) functioning
    Loss of self-esteem and self-belief"

There is a lot of good information on the PSS site, including a letter for health care provider. For those that may not know the site is called, Sepsis Alliance.

I have experienced many of those symptoms. I was also always wondering if I was developing sepsis again, should I see my PCP, will it happen again? Luckily I've over-come that fear. The fatigue was overwhelming for years.

However the sepsis was the result of a very traumatic MVA that by all accounts I should not have survived. I experienced PTS and was treated expertly for that - which I believe helped with the PSS too.

Have you tried therapy? It can be beneficial. I wish you the very best. Please keep in touch.

Take Care,
~Tuck
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Since the medical community knows so little of how it feels to live after sepsis, it is such a relief to find people who do understand.In 2012 my sepsis began in the kidney and quickly turned into septic shock. I was put in the ICU where I stayed on heart pumpers for several days. In many ways the days since then have been harder than the days in the hospital. I survived, but like many of you I wonder when (or worse if) I will ever feel awake again and live without pain. I truly feel like it is always 2 am. It is hard as a 41 year old homeschool mom of three to simply get through each day. Most of the time I do not feel "justified" in my fatigue since it has been so long since I was sick. As a result I have sought out neurologists, endocrinologists, rheumatologist so and even had a sleep study in order to find out what to do to feel better.  All of this to no avail. So perhaps it is just a journey of living with this new normal of trying to get through each day with a VERY limited amount of energy? Is that what you all have found? Sorry....I did not know how to start a new thread.....
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I think it took me nearly three months to recover at home from Sepsis. I had to use a walker at first and there were many things I couldn't do on my own. I'm Lucky I recovered so soon especially since I'm 65, have a chronic lung disease and MS. Besides from that, I still think about the realistic Hallucinations I had when I was uncontious. I'm beginning to think they weren't hallucinations. Please let me know if/what kind of thoughts you had if you were close to dying.
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547368 tn?1440545385
Welcome. Sorry I'm tardy to your post. I didn't see it till just now.

First let me tell you how to begin a new thread. Simply go to the top of this thread and on the right hand side click on the green bar that says "Post A Question."

It took me several years - close to five - to begin feeling normal again after my numerous bouts of Sepsis in a very short period of time.  Mine too came from the kidney. However I had so many other issues and continued surgeries and interventions that I was never certain what made me feel so horrid and out of touch.

I'm sorry you are struggling so much. You're correct - most medical professionals do not know about  PPS, or Post Sepsis Syndrome. I encourage you to enlighten them. Go to the web-site and print off the information. Hand it to your physicians after you have read it thoroughly. Ask for their thoughts and a plan of action.

I hope you'll get an MD to listen to you. My heart breaks for you and all of us who have experienced PPS.

My Best,
~Tuck
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547368 tn?1440545385
Hi Sharon,

Welcome to the Senior Health Community at MedHelp.

I've been close to dying several times. I had hallucinations also. I think you're asking if they were real? Medical science will say no. Those hallucinations are caused by medications or lack of oxygen to your brain.

That said - I don't always believe what Medical Science says. Personally I think it depends on the situation and the person. I also think that only that person knows what they "saw" or felt.

My hallucinations occurred even when I was awake. I actually saw my mother's head fold back in quarter folds and a black and white setting hen (chicken) rose - like on a hydraulic pedestal - from the top of her head. I know that was a hallucination. So maybe it depends on what you are calling a hallucination.

We're you "visited" by loved ones lost in death - or by a higher power? I believe that those things can and do happen. That's a belief system I hold - but science sure doesn't.

Believe what brings you comfort my dear. Life is short - take all the good  and comfort you can find. Those are my thoughts. I think your heart knows.

Peace,
~Tuck


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My 65yr husband was discharged after 5 days in hospital with septasaemia ? Caused by a UTI?  2wks ago He was admitted with a high temp, terrible confusion,disorientation scored 4 out of 20 on a mini mental test.  Now  still gets some words muddled ,remains very tired , poor appetite, going on a cruise in 6 myths for our 45 Anniversary. Just hope he's well by then. Reading above notes there seems no guidelines to expect decent recovery. Is this right ?
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547368 tn?1440545385
Hello and Welcome,

I'm so sorry to hear about your husband. Sepsis is often a nasty ordeal and my heart goes out to both of you. I notice you have a question mark after Sepsis and UTI - does that mean you're uncertain of the DX (diagnosis)?

Much like most other conditions and/or infections your general health can have a play in the outcome. I mean this in regards to how quickly and completely you recover - and/or how extreme or severe an infection or disease actually becomes.

In PPS (Post Sepsis Syndrome) that seems to play a part to some degree but not to a large degree. Healthy, young ppl can develop PPS and Seniors may not ever develop it. It's a crap shoot.

65 is no longer considered old - as it was 60-75 years ago. I would hope the odds are pretty equal in for his recovery. Sepsis - unlike most infections -  effects our body as a whole and can just take time.

I hope your husband has a complete recovery and will be healthy and chipper for your Anniversary Cruise. Please let us know how he is doing. If you have additional questions - or just want to chat or vent, we're here.

Warm Wishes,
~Tuck
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Hi Arianaz, I just read your story and it sounds so much like mine... I had a sepsis in August which in my case was induced by a streptocuccus bacterial infection on my foot. I spent 14 days i hospital and have been off work ever since. Hoping to be able to start work halftime in December....
I was wondering how you are feeling now, one year  after your post - I really hope you are feeling some drastic improvement. Are you still having any symptoms?
Do you have any tips and tricks? What helped with you, from your experience?
Thanks for sharing your story - it really helps seeing you're not the only one...
Ellenh (38 yr)
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547368 tn?1440545385
Sorry dear, Arianaz made just this one comment - and has not been on MH since. I am glad that she was able to give you some support in knowing you are not alone.

Members can chose to be notified if someone leaves a note or message on their Profile Page. If she did that you may be able to reach her through her Profile Page. I encourage you to give it a try.

I hope you will continue to heal. I wish you well. If we can help plz let us know. Best of luck to you!

Take Care,
~Tuck
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I was ill for 6 years. My dentists said my teeth were fine BUT eventually I got a CT scan on a crowned tooth. It had only 1 and a half roots filled and it should have had all 4 root canaled. This was a painless underlying constant source of infection and was the reason that , no matter how many anti biotics I had, I would never be able to overcome the infection and it was constantly poisoning me. I have now had a specialist root canal treatment and am recovering. Bad dentistry causes sepsis.
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547368 tn?1440545385
Hello Simplysoothing,

Welcome. I want to thank you for sharing your experience. I'm sorry this happened to you.

Our teeth/mouth can be a source of infection - and yes even Sepsis. We often over look that source - as do our medical providers.  These infections can even enter our brain. It's a fact that the average person either doesn't know or doesn't think about.

I'm glad that your issue was finally detected - but sorry that you had so suffer for six years before it was detected/diagnosed. I hope you'll consider beginning your own thread by clicking on the pink  "Ask A Question" bar. You're info needs to be easier seen/found with an internet search - it won't hidden in this old thread. When you begin your own thread  - "Ask A Question" - more ppl will view your info.

Again thanks for sharing.

Best Wishes,
~Tuck
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This goes way back; I am now 73 years old. In 1967 I had my first child by emergency Caesarian section (14 days overdue!) at Buckland Hospital in Dover, UK. A couple of days after delivery I became extremely ill. I was violently sick and taken into intensive care. I was in coma - yet vaguely aware that people were visiting and thought I was going to die. Somehow I knew I wouldn't, and eventually recovered consciousness. I was in there for 16 days, diagnosed with Septicaemia and a paralytic Ileus. The hospital, I later realised, was filthy (it's fine now, of course.) It took a long time to learn to walk again, and I would have bad episodes of lower abdominal pain and collapse at least once a month for years afterwards. I seemed eventually to have recovered - but in my 40s I developed horrendous migraines, and then chronic food intolerances. The food issue resolved after a few years, but the migraines morphed as I aged, and now I experience episodes of exhaustion  with some queasiness and discomfort in the head and left eye. Any extra activity can bring this on, so I have to pace myself carefully, and social life is very restricted. I hadn't realised until now that these problems might be connected to what is now called Sepsis rather than Septicaemia. Is my story typical of long-term survivors? I would be most interested to know. To have had a legitimate reason for all those decades of embarrassment would be very comforting.
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547368 tn?1440545385
Hello - and thank you for sharing your horrific experience. It sounds like you are blessed to still be with us! Many of us can appreciate that feeling!

I apologize for taking several days to respond to your questions and concerns. I've had some medical issues - but I'm back.

I am far from an expert in PSS (Post Sepsis Syndrome). All I really know is my own experience - and what I've read here. I've learned a lot from a web site called, Sepsis Alliance. The organization was founded in 2007 by Dr. Carl Flatley, Here's the link:

http://www.sepsis.org/sepsis/post_sepsis_syndrome

On Sepsis Alliance I've read "....lasting physical issues can be explained, but there is more to PSS that cannot yet be explained, such as the disabling fatigue and chronic pain that many survivors experience."  

In other words they just don't know. I believe it is possible that what you are experiencing can be the result of your severe bout with Sepsis. That said I would want to r/o (rule out) any other medical issue that could be causing your SX (symptoms). I wouldn't want you - or your medical team to over look other pressing or serious possibilities.

Usually SXs that have no other explanation or cannot be attributed to other medical issues are then contributed to PSS - that's if they fit the criteria. Obviously they don't just willy-nilly say you have PSS just because they can't find answers. Understand that there are Practitioners that truly question the validity of a PSS diagnosis (DX). Not all recognize it.  

PSS is a condition that affects up to 50% of sepsis survivors. That's a fairly high percentage. It's also a newer DX - so there are not years of study to draw and learn from.  

Looking at your SX - queasiness and discomfort in the head and left eye can go hand in hand with migraines. The exhaustion doesn't necessarily fit but again I'm not an expert. Have you had recent imaging of your head or brain? If not I would request testing - just to cover all the bases. Be sure to ask that they use contrast - as it's more definitive.

It makes me sad that you have endured, "decades of embarrassment" for physical calamities that were/are beyond your control. There is nothing to be embarrassed over - you experienced a horrific ordeal when you contracted Sepsis. It's truly not your fault! It's very possible your SX were/are due to PSS - but even if it's not related to your HX of sepsis or PSS - you are still not responsible for your medical SXs. My heart goes out to you!

I hope something I've offered has been of help. I'll look forward to hearing from you again soon. Please stop in often.

Take Good Care of Yourself,
~Tuck
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I have been fighting recovery for six months now. Still have open wounds, so I have to be vigilant in my high protein diet and supplements. Women have a real vitamin D issue. I take at least 50000 a week.  I would get your tested right away and you can start by taking 10000 a day over the counter. Good luck!
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22 female. Got sepsis from an abscess/wound on my leg. Both kidneys got abscesses. Went to the hospital cuz I couldnt walk hardly {sore swollen ankles and wrists, soles of feet hurt, severe abdominal pain, also couldnt eat for 5+ days and throwing up green. Spent a week in the hosptial and one week with daily antibiotic infusions done. Made a full recovery and livin good
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I became ill with a UTI 4 months ago. I was so sick that I didn't realize I was ill. I just thought I was extremely tired, always on the go. then the pain hit like no other I ever felt before. every nerve, muscle, and bone hurt. I couldn't move. Went to ER, told them I was confused and was having a hard time speaking, they immediately thought I was having a stroke. after a CT and some lab work I was told I had severe UTI by the doctor. he gave me IV antibiotic, some to take home and I was dismissed. after the Dr. left the room the nurse on duty told me I was septic. being septic was not noted in my paperwork. she was making sure I knew how sick I was before I left. she called a week later to check on me on her own time. I had no insurance at the time so I was not admitted to the hospital. went home and had to rely completely on a friend to eat, take meds on time and help to bathroom for 2 weeks. so weak and delirious at times. after 2 weeks in bed I finally had the will to take a bath, with help. it exhausted me and I stayed in bed for another week. eventually I began to regain strength enough to feed myself, but was so confused I couldn't figure out how to open the bread. (BTW I can write better than I can speak today). it is four months later and I still struggle with the mental confusion depending on how tired and/or dehydrated I get. at first I could only stay up 2 hours, then 3 and so on. today I am doing good to stay up and busy 4 or 5 hours at a time. if I overdo it l need at least 3 days of rest to be able to get up again. it is still a struggle, but ever so slowly I am getting my strength back. PACING MYSELF IS HARD, BUT KEY. 4 months later I am better. I am realizing that the recovery period may take a lot longer than I had thought. this is not something you just "bounce back from". the worst part is the mental confusion, loss of cognitive skills and not being able to communicate what is happening to the Dr. and family/friends. some have labeled me as lazy or "shot-out" which doesn't help with self-esteem. I am grateful I found this site because the stories have let me know that I am not crazy. I was just a very sick woman, sicker than I thought. I now have the validation that I needed for my own sanity. thank you to everyone for sharing your experiences.
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strawberryborn1

I became ill with a UTI 4 months ago. I was so sick that I didn't realize I was ill. I just thought I was extremely tired, always on the go. then the pain hit like no other I ever felt before. every nerve, muscle, and bone hurt. I couldn't move. Went to ER, told them I was confused and was having a hard time speaking, they immediately thought I was having a stroke. after a CT and some lab work I was told I had severe UTI by the doctor. he gave me IV antibiotic, some to take home and I was dismissed. after the Dr. left the room the nurse on duty told me I was septic. being septic was not noted in my paperwork. she was making sure I knew how sick I was before I left. she called a week later to check on me on her own time. I had no insurance at the time so I was not admitted to the hospital. went home and had to rely completely on a friend to eat, take meds on time and help to bathroom for 2 weeks. so weak and delirious at times. after 2 weeks in bed I finally had the will to take a bath, with help. it exhausted me and I stayed in bed for another week. eventually I began to regain strength enough to feed myself, but was so confused I couldn't figure out how to open the bread. (BTW I can write better than I can speak today). it is four months later and I still struggle with the mental confusion depending on how tired and/or dehydrated I get. at first I could only stay up 2 hours, then 3 and so on. today I am doing good to stay up and busy 4 or 5 hours at a time. if I overdo it l need at least 3 days of rest to be able to get up again. it is still a struggle, but ever so slowly I am getting my strength back. PACING MYSELF IS HARD, BUT KEY. 4 months later I am better. I am realizing that the recovery period may take a lot longer than I had thought. this is not something you just "bounce back from". the worst part is the mental confusion, loss of cognitive skills and not being able to communicate what is happening to the Dr. and family/friends. some have labeled me as lazy or "shot-out" which doesn't help with self-esteem. I am grateful I found this site because the stories have let me know that I am not crazy. I was just a very sick woman, sicker than I thought. I now have the validation that I needed for my own sanity. thank you to everyone for sharing your experiences.
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Hi, I am a 31 yr old woman, my story starts with a hysterectomy I had to get due to bad endometriousis not sure I spelled that right lol anyways during the surgery the Dr accidentally clipped my bladder so I had to go home with a Foley catheter. Two weeks later I was in the er bc I wasnt peeing normal and and had clots in my bag. Come to find out urine had backed up into my ureter and caused a block so I had surgery to have a stent put in, (worst pain ever) and two week later it was taken out. then the pain in my back grew stronger and stronger and once again I was back at the urologist, he took many test and found that my ureter was four times the normal size, wish I could post a pic but any it made the opening to my bladder too narrow so my next surgery he used a balloon and inserted another stent, which had to be removed after a week from severe pain, finally my doc decided he could do a ureteral reimplantation which is where they cut out the bad part of the ureter and plug it into a diff part of the bladder, and again I went home with a Foley cath and had problems with it from the beginning it actually came out and I had to go back and have it put back in, finally the two weeks came and I could get it out bc my cystogram thing showed no leaks but I told the nurse I had a yeast infection and she still never checked my urine like their suppose to. Two days later I awoke in a lot of pain and weakness body aches headache, knew something wasn't right so I called my Dr who said everything was fine and he didn't think I needed pain meds ( he assumed from the six prior months and four diff surgeries that I was just withdrawing) he was wrong. About four hours later I decided maybe I just needed out of the house  so I went and got NY nails done all the while knowing something wasn't right in the back of my mind, I was starting to freeze couldn't stop shaking I got in my car and turned the heat on full blast even tho it was 75° outside, I called my sister told her I couldn't drive and to come get me but while I was waiting I got dizzy disoriented and saw that the shopping center I was at had a small urgent care I made myself walk in and they said they couldn't help me without even examining me, I collapsed and they called the squad, my fever was 105° I didn't know who I was or where I was or what was going on I just felt the pain everywhere down into every bone every muscle every part of my being, I was admitted to the hospital and my bp was extremely low 58/40 and my oxygen was low in the 80s they pushed iv antibiotics for four days and after the third day my fever finally broke the next day I left the hospital the Dr wasn't happy but I have two young children who need me. It has now been two weeks and I still run low grade fevers and hurt everywhere and am weak and like every story on here I can't do much and have to lay down every two hours. I feel as if my life is ruined and am in a depression, I have two kids to take care of and am struggling to do it, I have a wonderful husband who stands by me and family and friends but feel as if they don't understand the constant pains in my body and yes sometimes I feel like maybe I was supposed to die in the hospital but love god and know there's a reason I'm still here just wish this pain and weakness would stop, it doesn't help that I have a Dr who thinks I take too much pain meds either.

Thanks for listening to my story,
Pain and suffering in Ohio.
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I just turned 65 and seemed had some health problems which medication was all I needed.  I went on vacation and was in ICU within 72 hours.  I did not feel sick but told my friend I was seeing double at times.  Later on in the day I lost control of my bowels.  They took my blood pressure and it was something over 40.  They kept checking it and it wasn't going up by just resting.  My friends mother fortunately was a retired nurse and suspected it might be sepsis.  So after 6 days in the hospital I felt good enough to catch my plane back home.  Checked in with my PC Physician.  they took a blood test and just said I was low on magnesium, potassium, iron, white blood cells.  So I go back after the blood test expecting to follow up on sepsis.  The doctor just asked how I was feeling and I complained my kidneys hurt and was extreme constipated.  He said come back in six months.  So I proceeded to make appointments with specialists i.e. urologist and internist just to have them check me.  It seems to me the general doctors are afraid to deal with sepsis until your next attack or major breakdown ?  I would recommend getting second opinions.  I will find out if I have further damage to my organs beyond a blood test.  best to you all.
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