Discussions By Condition: Immune conditions

severe bacterial sepsis "survivor" needs help

Posted In: Immune conditions 13 Replies
  • Posted By: ElizabethJ
  • January 7, 2008
  • 00:11 AM

it started with a sinus infection and home IV therapy, then i was being treated for a compromised immune system and had anti-body replacement therapy, followed by horrific groin pain which turned out to be bacterial sepsis requiring hip surgery followed by more week of home IV therapy.

2 months have passed and i am still being treated for shortness of breath. my hip is still sore and feels like a sunburn. i can walk in a pendulum motion but no side movement of leg without pain (the ortho surgeon dismissed me).

the ortho surgeon, lung doctor, and infectious dis docs have written me off as 'cured' and my employer expects me back to work very soon. i know i'm not functioning properly. i am extremely fatigued, the leg pain often wakes me during the night and if on my feet too long my limp becomes more pronounced. i am still short of breath walking stairs or doing minor tasks.

i am a flight attendant and will be expected to work 14 hr shifts on my feet upon my return to work. in my current condition, this would probably kill me. if i do not return i will surely be terminated and lose my badly needed medical benefits. i have already been out of work more than 6 months.

just how long does it take to actually 'fully' recover from this sepsis? i can't seem to find ANYBODY who knows.

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13 Replies:

  • Hello Sepsis survivor:I too have survived the horrific sepsis, yet I often wonder why. I developed a horrible case of sepsis after a hernia repair surgery...I was only 32 years old. I'm sorry to tell you that five years later, I have not recovered from the illness. I've never gotten over the horrible joint pain and deep body pain that I had the day that I suffered from the 106 degree fever. I cannot seem to get any answers. The doctors say that the sepsis initiated an inflammatory response and an overactive immune response, yet after five years, I continue to be in constant pain and I am not better, actually worse. I hope your case if different, maybe yours did not get as bad as mine, I had an open wound for nine months and was deathly ill. The doctor did not listen to me early on when I told him that something was wrong with me, and so here I am, with my quality of life snatched from me, a lifetime of doctor bills to look forward to, and no answers...I truly feel your pain.it started with a sinus infection and home IV therapy, then i was being treated for a compromised immune system and had anti-body replacement therapy, followed by horrific groin pain which turned out to be bacterial sepsis requiring hip surgery followed by more week of home IV therapy. 2 months have passed and i am still being treated for shortness of breath. my hip is still sore and feels like a sunburn. i can walk in a pendulum motion but no side movement of leg without pain (the ortho surgeon dismissed me). the ortho surgeon, lung doctor, and infectious dis docs have written me off as 'cured' and my employer expects me back to work very soon. i know i'm not functioning properly. i am extremely fatigued, the leg pain often wakes me during the night and if on my feet too long my limp becomes more pronounced. i am still short of breath walking stairs or doing minor tasks. i am a flight attendant and will be expected to work 14 hr shifts on my feet upon my return to work. in my current condition, this would probably kill me. if i do not return i will surely be terminated and lose my badly needed medical benefits. i have already been out of work more than 6 months. just how long does it take to actually 'fully' recover from this sepsis? i can't seem to find ANYBODY who knows.
    Anonymous 42789 Replies
    • November 30, 2009
    • 04:00 PM
    • 0
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  • Hello Sepsis survivor: I too have survived the horrific sepsis, yet I often wonder why. I developed a horrible case of sepsis after a hernia repair surgery...I was only 32 years old. I'm sorry to tell you that five years later, I have not recovered from the illness. I've never gotten over the horrible joint pain and deep body pain that I had the day that I suffered from the 106 degree fever. I cannot seem to get any answers. The doctors say that the sepsis initiated an inflammatory response and an overactive immune response, yet after five years, I continue to be in constant pain and I am not better, actually worse. I hope your case if different, maybe yours did not get as bad as mine, I had an open wound for nine months and was deathly ill. The doctor did not listen to me early on when I told him that something was wrong with me, and so here I am, with my quality of life snatched from me, a lifetime of doctor bills to look forward to, and no answers...I truly feel your pain. i posted a long time ago. sorry to hear you are going through a bad time. i never did get any better, i get progressively worse. i had to give up flying and then sold cars for a year until i got laid off. unemployed for 11 months now and symptoms have gotten worse in the meantime. the swelling and pain in my legs sometimes just throttles me and the damage to my heart and lungs caused by the infection doesn't allow me to do much. i've had congestive heart failure 2x this yr. cobra ends soon so no med insurance but i stopped going to the docs because they were financially draining and of no help. i'm 58 and out of work, sick, and probably will lose my home as well if i can't work. i think doctors don't know enough about what can happen to you after a bad case of sepsis but i can testify that it can destroy your life. i miss the fit, healthy and active life i used to enjoy. i do hope you get some answers. i still believe in miracles. good luck to you and thanks for letting me know i'm not alone out here.
    ElizabethJ 1 Replies
    • December 1, 2009
    • 11:52 AM
    • 0
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  • Hi,My friend is in the ICU since Tuesday suffering from sepsis. She is getting worst each day but it's a relief to learn that there are people who actually survived from this even though quality of life after is not too promising. It just warms my heart to know that someday somehow I will see my friend walk-out from the front door of the hospital and not thru the back. She have 4 children and the youngest is 2yrs old. As a mother myself, I wouldn't want to leave my children this small. We pray she will survive like you. Thanks.arlenei posted a long time ago. sorry to hear you are going through a bad time. i never did get any better, i get progressively worse. i had to give up flying and then sold cars for a year until i got laid off. unemployed for 11 months now and symptoms have gotten worse in the meantime. the swelling and pain in my legs sometimes just throttles me and the damage to my heart and lungs caused by the infection doesn't allow me to do much. i've had congestive heart failure 2x this yr. cobra ends soon so no med insurance but i stopped going to the docs because they were financially draining and of no help. i'm 58 and out of work, sick, and probably will lose my home as well if i can't work. i think doctors don't know enough about what can happen to you after a bad case of sepsis but i can testify that it can destroy your life. i miss the fit, healthy and active life i used to enjoy. i do hope you get some answers. i still believe in miracles. good luck to you and thanks for letting me know i'm not alone out here.
    Anonymous 42789 Replies Flag this Response
  • Hi,My friend is in the ICU since Tuesday suffering from sepsis. She is getting worst each day but it's a relief to learn that there are people who actually survived from this even though quality of life after is not too promising. It just warms my heart to know that someday somehow I will see my friend walk-out from the front door of the hospital and not thru the back. She have 4 children and the youngest is 2yrs old. As a mother myself, I wouldn't want to leave my children this small. We pray she will survive like you. Thanks.arleneHi,I am a survivor of Sepsis Shock. Five years ago, I was placed in the ICU, breathing through a ventilator, received a blood transfusion, and woke up from a coma after 3 weeks. I was not suppose to survive. The doctor (seen by 22 specialists total) told my family that I'm most likely not going to survive from this because it had gotten so bad, that in the condition I was in, all (that he had witnessed) did not make it. But, I did. I was only 22 years old, and it had hit me out of nowhere. Be strong for your friend, and I hope she will make it through.
    Anonymous 42789 Replies Flag this Response
  • what about supplementing with fresh garlic or garlic pills that have the smell(without scent they are ineffective) and fresh produce especially fruit like pineapple and blueberries. I am on a nutritional shake (2 per day). our nutritional imbalances do affect our health. non genetically modified and organic products may help. goldenseal root capsules for a short time cleared up my boyfriends sinusitis.
    Anonymous 42789 Replies Flag this Response
  • someone i no is in the hospital with a serious case of sepsis. her intesines are out and they are saying they are hopeless and they dont know what to do anymore.if anyone at all can help,please contact me asap. thankyou and it would be greatly appreciated.
    Anonymous 42789 Replies
    • November 29, 2010
    • 02:11 AM
    • 0
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  • Hi,I am a survivor of Sepsis Shock. Five years ago, I was placed in the ICU, breathing through a ventilator, received a blood transfusion, and woke up from a coma after 3 weeks. I was not suppose to survive. The doctor (seen by 22 specialists total) told my family that I'm most likely not going to survive from this because it had gotten so bad, that in the condition I was in, all (that he had witnessed) did not make it. But, I did. I was only 22 years old, and it had hit me out of nowhere. Be strong for your friend, and I hope she will make it through.I would like to know how you feel after five years.I am 9 months from when I first came down with sepsis about 7-8 after it clearing and I am having all sorts of issues.my whole body aches.I have heaviness and numbness especially in my left foot.I have strange growths on my hands and have had other infections caused by the antibiotics such as c diff and thrush.I have sinus problems,confusion and insomnia.my skin dry,my hair is dry.I am afraid of getting it again and the statistics of survival of up to 5 years are not good according to what I have read.I am looking for some hope of a somewhat normal life.If any one can share experience please do.
    Anonymous 42789 Replies Flag this Response
  • I have some information, but probably not more than you all have found in your research. I was inspired to learn as much as possible about the quality of life after sepsis as my grandmother, age 76, who was previously an EXTREMELY healthy person with ZERO health problems had an abrupt emergency surgery. Her blood culture came up positive and we were told there was no hope: multiple organ failure, dialysis wouldn't work, and every other complication. Out of nowhere, after 5 weeks, she bounced back and blood levels returned to normal/she is breathing on own, etc.It seems the long-term outcome highly depends on how quickly the infection is found and treated. For previously healthy people, I have read numerous places that the death rate is around 5%. For people that survive, it seems that the aches and pains that accompany it are ongoing but there are ways to lessen it. Mostly, there seems to be a disrupt in the person's immune system, making it easier to get sick (so daily vitamin C, no smoking, no drinking alcohol, etc.) There doesn't seem to be a "recover" if the pain is long-term persistent as it can cause specific ailments or failures in various organs. It does, however, seem to be a miracle to survive it so God bless you for that. Perhaps seeing a pain management doctor may help ease whatever is going on with therapies as pain medication may be harsh on the liver and lessen immune system strength. I'm sorry if this is useless information, I will certainly keep you in my prayers.
    Anonymous 42789 Replies Flag this Response
  • Hello. I am a recent sepsis survivor and just feel alone. I would like to hear from other survivors as I don't really know anyone else who has had this, let alone survive this. I am a 40year old formerly very active and healthy female. I have been battling DVT (deep vein thrombosis) for the past 2.5 years. It was when I was hospitalized for thrombosis surgeries this past April that I got the sepsis staph infection. I was in the ICU for several weeks and upon returning home did home IV abx every 8 hours for another month. I just got my PICC line out a few weeks ago and cultures on that were thankfully negative. I lost 20# in short time due to the infection (and I was 'underweight' to begin with so it made a drastic impact). I am regaining my weight but now and am finding several allergies that I didn't used to have. Some fruits, wheat, dairy etc. During my hospitalization I had multiple organ failure due to the infection. I was one CT away and being educated about removal of portions of my colon. Thankfully they did not proceed with that, but my GI system is pretty well shot. My lungs collapsed, I had pleurisy, 3 thoracentesis procedures, and have infectious embolisms from the infection on my lungs that we have to 'watch'. So far, most of my lung issues seem resolved. I am working on gaining my weight back, and just saw an osteopathic therapist today for pain. I had never been to an osteopath before but it really was a positive experience and I think will make a difference. Has anyone overcome and gone on to lead a positive healthy active life? I have permanent leg/vein damage due to the DVT which has caused some disability but I am hoping to be as active as I can as I recover.
    Anonymous 42789 Replies Flag this Response
  • My beloved Grandpa was just admitted to the hospital a couple of days ago, on the morning of Friday, October 26th, because he's been looking pale and had difficulty breathing. It seems so sudden, because before this, i just saw him on Monday and he seemed fine. He's 75 years old, has had multiple strokes a couple of years ago and has been bed-ridden these last couple of years, but has retained cognition all through those years. The doctor in the ER told my Mom he's been diagnosed with severe sepsis. He was starting to look better that same morning of admission to the hospital but as of yesterday morning, they said he has "deteriorated." They said his kidney and liver may have started to fail. They are administering IV fluids and antibiotics. He is on a ventilator and they are suctioning out phlegm from time to time which looks very painful to see him react to. I just turned 29 and have known my Grandpa my whole life, he is a rock of stability for us. My Grandma is on the verge of being hysterical, and so is my Mom. I have to admit, these past few months with everything going on, i haven't been able to fully appreciate Grandpa and have been apathetic sometimes. Now this all seems too real. The doctor and some of the nurses i've seen these past couple of days seem to be nonchalant and have spoken with a depressing tone. I'm sorry i've been a bit apathetic sometimes Grandpa, but i love you. I love my Grandpa so much. We all love him. Even though we will never give up hope, given his condition, what are his chances? Through the recent research i've done, i've read cases where people have been given a depressing outlook but have proved all the naysayers wrong. Is there anything else they can do to help besides administering IV fluids and antibiotics? I LOVE YOU, GRANDPA.
    gloomyoptimist1 1 Replies
    • October 28, 2012
    • 07:44 AM
    • 0
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  • My stepfather is recovering from a post surgical wound that got infected. He had a total knee replacement and after 4 weeks of recovery, his post surgical wound began to ooze and he wasn't feeling well, lethargic, night sweats etc... He was admitted to the hospital for one week and they diagnosed him with staph aureus,. The orthopaedic doctor went ahead and did surgery again to clean out and irrigate his knee, as well as confirm there was no infection in the actual knee replacement or bone. We did find out the infection had seeped into the quadriceps tendon, therefore they had to cut out the infection and re-attach the quad tendon. The bone and knee replacement looked ok. My stepfather has been placed in a knee immobilizer and told not to bend his knee now for 4-5 weeks. (He is now about 3.5 weeks post) He has intravenous antibiotics given to him twice a day (for 6 weeks total). He is not scheduled to see the infectious disease doctor (where they will re-evaluate his blood), for another 10 days or so. He has not been able to begin rehab because he's told to stay in the knee immobilizer. His muscles have atrophied a lot. My question is, how long does it take to recover from a bacterial sepsis? He is now 3 weeks post the second surgery, and he is still very lethargic, fatigued, his knee is still achy, sweats whenever he takes Tylenol (which he is supposedly allowed) and just doesn't seem himself. Should we be worried? Or continue to wait the 10 days until he follows up with his orthopaedic and the infectious disease doctor? Curious what other people's experiences were like after 3 weeks of sepsis?
    prunella22 1 Replies
    • November 9, 2013
    • 03:30 AM
    • 0
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  • I had sepsis in 2009. I have terrible leg and body pain. Finally found a FNP to give me pain meds. They are the only thing that helps and I have tried everything. Otc to lyrica.
    Anonymous 1 Replies Flag this Response
  • Hi sepsis survivor. I had sepsis in 2009 due to infected PICC line. Which I had 4 lines that had infection. Was in out hosp. For 3 months withat sepsis. My body Hurts so bad i want to cry and most the drs say just deal. Have been on otc meds to lyrica. Nothing helps except the pain meds my nurse practitioner prescribes me and thank God for that. She is only person who will listen. If u can find a dr who can prescribe pain meds then stick with them. Also if nothing else try Tramadol 300 mg helps me a tiny bit but maybe will you. Just be careful can cause seizures around that dose and higher dose can really increase chance. Good luck hope you find help
    Anonymous 1 Replies Flag this Response
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